Merry Christmas !!
Friday, December 23, 2016
Tuesday, November 8, 2016
November is Lung Cancer Awareness Month!!
Happy November!!
I am sorry that I am so behind in keeping this blog up to date. I just have been feeling so wiped out and being on the computer for any length of time also "kills" my neck and back. Thankfully this has more to do with the Fibromyalgia Battle than it does the Cancer battle and that a good thing.
As for me and my battle -- I'm now 19 months since the day I was diagnosed (3/26/15)and still taking each day as they come. I'm currently on another treatment break (from Opdivo), which is the Immunotherapy Drug I'm now on and have been for almost a year. Unfortunately it has a lot of side effects and I have developed Pneumonitis for the third time. UGH! It's low grade, so they had again stopped my treatment and I'll go back on December 1st and see how it's going. I do HOPE I can go back on the Opdivo, as it does seem to work for me, despite the side effects. Jump back to last November, I had learned that my lung tumor had come back and was quite aggressive -- I was immediately started on Radiation and began my Opdivo treatments in December. My tumor is currently "stable" and significantly smaller that it was last year -- It's gone form 4.1 X 2.4 cm to 18mm, which is wonderful.
But, I did want to tell you a bit more about Lung Cancer and share the November is Lung Cancer Awareness Month to help promote more awareness and to share some fact about Lung Cancer!!
Lung Cancer is the deadliest of ALL the Cancers -- and I admit, until I learned I had Stage IV Lung Cancer I had no idea. I would have guessed Breast Cancer or possibly Colon Cancer, but I would have been wrong. Sadly Lung Cancer has a huge "Stigma" attached to it and that is "Smoking". It's as if everyone assumes that people with Lung Cancer are or were all smokes and therefore, they did this to themselves. Now how sad is that. The fact is every day people are diagnosed with Lung Cancer that have never smoked -- there are many ways to get this dreaded illness and more that I'm sure we do not even know about yet.
I want to thank everyone who has continued to support me through this battle. It's getting hard and harder and as time goes on, so do other lives and people kind of forget how hard this is for me. On top of that I also recently lost my Primary Oncologist, Dr. Rajitha Sunkara who I have loved and been with since the beginning. She is been excellent and I have felt so confident in her care and her treatment plan, not to mention that she was affiliated with my local hospital, which allowed me to have the majority of my treatments so close to home. I will miss her terrible, but I am happy that she has been offered a wonderful Thoracic Oncology position at Dana Farber and will be affiliated with their South Shore Hospital. Sadly that makes it much too long of a drive for me to see her for ALL my care, but she plans to follow me and will help me with any decisions and second opinions, as needed. We will definitely be in touch and since I'm currently "off" treatment, I plan to continue to care at my local hospital. I will hope in time that I'll find another Oncologist who I love as much as I have loved her and the care she's give me. I truly feel she has saved me life, especially when she "talked me into trying OpdivO' something i was very afraid to do. I now feel it saved my life and hope it will continue to do so. My Sage of Cancer is not curable - but is treatment! I hope and pray every day that I can battle it until the time there will be a CURE!!
Today, I went to a local Support Group but was sad to find out that it's not likely to continue much longer as there has not been much interest. They started meeting last December and meet monthly, but have had a hard time getting the word out, so there has not been many people at the meetings! Bummer. There was only one other person there along with the Group Coach who is also battling Stage IV Non-Small Cell Lung Cancer and has been for many years. I really had hoped to connect with more people my age, to help me with ideas and support, so it was disappointing. And some of what we talked about, I learned are support and care I'm not eligible for since I'm under 65 and not income eligible. Geesh!! -- Young people get cancer too!!! I do plan to go back next month if they hold it again, but if not I will continue in my online groups which have been awesome. If you would like to learn MORE about Lung Cancer -- here are some sites that share a wealth of information --- If you are a new Cancer patient (any type) -- and need a friend, please message me!!
I am sorry that I am so behind in keeping this blog up to date. I just have been feeling so wiped out and being on the computer for any length of time also "kills" my neck and back. Thankfully this has more to do with the Fibromyalgia Battle than it does the Cancer battle and that a good thing.
As for me and my battle -- I'm now 19 months since the day I was diagnosed (3/26/15)and still taking each day as they come. I'm currently on another treatment break (from Opdivo), which is the Immunotherapy Drug I'm now on and have been for almost a year. Unfortunately it has a lot of side effects and I have developed Pneumonitis for the third time. UGH! It's low grade, so they had again stopped my treatment and I'll go back on December 1st and see how it's going. I do HOPE I can go back on the Opdivo, as it does seem to work for me, despite the side effects. Jump back to last November, I had learned that my lung tumor had come back and was quite aggressive -- I was immediately started on Radiation and began my Opdivo treatments in December. My tumor is currently "stable" and significantly smaller that it was last year -- It's gone form 4.1 X 2.4 cm to 18mm, which is wonderful.
But, I did want to tell you a bit more about Lung Cancer and share the November is Lung Cancer Awareness Month to help promote more awareness and to share some fact about Lung Cancer!!
Lung Cancer is the deadliest of ALL the Cancers -- and I admit, until I learned I had Stage IV Lung Cancer I had no idea. I would have guessed Breast Cancer or possibly Colon Cancer, but I would have been wrong. Sadly Lung Cancer has a huge "Stigma" attached to it and that is "Smoking". It's as if everyone assumes that people with Lung Cancer are or were all smokes and therefore, they did this to themselves. Now how sad is that. The fact is every day people are diagnosed with Lung Cancer that have never smoked -- there are many ways to get this dreaded illness and more that I'm sure we do not even know about yet.
Today, I went to a local Support Group but was sad to find out that it's not likely to continue much longer as there has not been much interest. They started meeting last December and meet monthly, but have had a hard time getting the word out, so there has not been many people at the meetings! Bummer. There was only one other person there along with the Group Coach who is also battling Stage IV Non-Small Cell Lung Cancer and has been for many years. I really had hoped to connect with more people my age, to help me with ideas and support, so it was disappointing. And some of what we talked about, I learned are support and care I'm not eligible for since I'm under 65 and not income eligible. Geesh!! -- Young people get cancer too!!! I do plan to go back next month if they hold it again, but if not I will continue in my online groups which have been awesome. If you would like to learn MORE about Lung Cancer -- here are some sites that share a wealth of information --- If you are a new Cancer patient (any type) -- and need a friend, please message me!!
Thanks for stopping by....
Sunday, September 25, 2016
Some Happy News to share....
Thursday, September 15, 2016
Long overdue update....
It's been ages since I have posted here, mostly because I have spent a lot of time feeling like crap and have not really had much news to share, after being off of Opdivo for several weeks. We had all hoped the treatment break would help me feel better and also allow the Pneumonitis to clear.
I was finally cleared to re-start my treatment in August. I had my first infusion on the 17th and a second one of the 31st and both went fine. I was scheduled for one more than then was going to have my next CT Scan to see how it was working and to make sure there was no signs of the Pneumonitis.
Thankfully, I felt pretty good during that "off" week, which was wonderful especially since my son, Brian, was home for a short visit. It was awesome to be with him, but the time flew by and he headed back to San Diego on the 29th. Ironically, he woke up that morning and had a lot of pain in his knee and actually took the time to go to the drugstore and buy a support to wear for the long flight home. He also bought some Ibuprofen and started taking it that morning, thinking he had slept wrong or something? The next morning, (back in San Diego) he woke up in intense pain and had a huge amount of swelling and could barely walk or move around. He managed to hobble to a "work" meeting and then headed directly to Urgent Care, where he went spent the afternoon having all kinds of tests. Later in the day, they told him he need to go to the ER, because he needed more care, than they can do there and had set him up to be seen by an Ortho Doc as well as an Internal Med doc so they could drain some of the fluid off his knee.
Long story short, he had that done (quite a painful procedure), which unfortunately did not give him any relief. They then put him on IV Pain meds and he started running a fever and his white counts were elevated, so he ended up having to be admitted to the hospital that night. His admitting diagnosis was a question of "Septic Arthritis". He was in severe pain and even after draining 50 cc of fluid, he was not improving. He spent the next two days there and in the end, they determined he had a very rare form of Arthritis that was actually caused by Salmonella. He had had a case of what he thought was "food poisoning" about two weeks before he was was here. The Salmonella showed up in this lab work and they put it all together. Some how the 'bacteria' from the Salmonella settles into joints (often knees) and causes this sudden onset of acute pain and inflammation. It's also most common in males under 40, but is very rare, typically under 20,000 cases per year. Luckily, one of his docs had see it once before (about five years prior) and he was the one who figured it out. Otherwise, God knows how many more tests he may have needed to determine what this was. He was treated with IV Antibiotics and Anti-Inflammatory meds and eventually discharged and has since had a follow up with his PCP. I was super stressed and found it very difficult to my have my son in the hospital 3,000+ mile away. Plus, Brian has never really been sick much in his entire life (he's now 29). Even as a child he never missed school and rarely even had a cold.
That was a very difficult week for me, as it's very hard on any Mom to have their child (no matter what age) be so far from home and be sick so suddenly. Plus, I am not well enough to travel, so there was no way I could fly out to be there with him and I felt awful about that. Thankfully, he kept in touch several times each day and I also received updates from his medical team. I'm so grateful that he is now on the mend but it's going to take a long time for his knee to be back to normal and to be out of pain. And, the timing is terrible, since he is also in the process moving and changing jobs all on top of being in pain! Argh!! Hectic and stress for all!!
On top of that, I also ended up in the ER on the Friday night of Labor Day Weekend with intense belly pain and a fever (just two days after my Infusion) and any time you develop a fever over 100.5, after treatment, you need to call your Gynecologist, which is what I did and she sent me to the ER. We spent six hours there and had a tons of labs, a chest x-ray and a CT of my Lung and Abdomen which showed I have Pneumonia in my left lung...UGH! I was discharged that night as the initial reports looked good, but the day day, the ER doc who had treated me called to tell me the the second reading of my scans, clearly showed the Pneumonia. She then contacted my Oncologist and by then my fever was gone. I was exhausted, but otherwise okay. I also had/have a type of "Walking Pneumonia" and although she did call me in a RX for antibiotics, she told me not to take them unless the fever comes back for any symptoms, luckily that has not happened. I have no cough, pain or shortness of breath, just the same old fatigue and nausea and of course the bouts of belly pain, that we still don't really understand. My belly CT scan was fine and there was NO new cancer!! I'll be seeing Dr. Sunkara on the 21st, but we know that I need to again stop the Opdivo, as it is the cause of this and now it's more likely I will not be able to go back on it. So back the the drawing board for a new game plan? Hoping for the best and still taking One Day at a Time!
I was finally cleared to re-start my treatment in August. I had my first infusion on the 17th and a second one of the 31st and both went fine. I was scheduled for one more than then was going to have my next CT Scan to see how it was working and to make sure there was no signs of the Pneumonitis.
Thankfully, I felt pretty good during that "off" week, which was wonderful especially since my son, Brian, was home for a short visit. It was awesome to be with him, but the time flew by and he headed back to San Diego on the 29th. Ironically, he woke up that morning and had a lot of pain in his knee and actually took the time to go to the drugstore and buy a support to wear for the long flight home. He also bought some Ibuprofen and started taking it that morning, thinking he had slept wrong or something? The next morning, (back in San Diego) he woke up in intense pain and had a huge amount of swelling and could barely walk or move around. He managed to hobble to a "work" meeting and then headed directly to Urgent Care, where he went spent the afternoon having all kinds of tests. Later in the day, they told him he need to go to the ER, because he needed more care, than they can do there and had set him up to be seen by an Ortho Doc as well as an Internal Med doc so they could drain some of the fluid off his knee.
Long story short, he had that done (quite a painful procedure), which unfortunately did not give him any relief. They then put him on IV Pain meds and he started running a fever and his white counts were elevated, so he ended up having to be admitted to the hospital that night. His admitting diagnosis was a question of "Septic Arthritis". He was in severe pain and even after draining 50 cc of fluid, he was not improving. He spent the next two days there and in the end, they determined he had a very rare form of Arthritis that was actually caused by Salmonella. He had had a case of what he thought was "food poisoning" about two weeks before he was was here. The Salmonella showed up in this lab work and they put it all together. Some how the 'bacteria' from the Salmonella settles into joints (often knees) and causes this sudden onset of acute pain and inflammation. It's also most common in males under 40, but is very rare, typically under 20,000 cases per year. Luckily, one of his docs had see it once before (about five years prior) and he was the one who figured it out. Otherwise, God knows how many more tests he may have needed to determine what this was. He was treated with IV Antibiotics and Anti-Inflammatory meds and eventually discharged and has since had a follow up with his PCP. I was super stressed and found it very difficult to my have my son in the hospital 3,000+ mile away. Plus, Brian has never really been sick much in his entire life (he's now 29). Even as a child he never missed school and rarely even had a cold.
That was a very difficult week for me, as it's very hard on any Mom to have their child (no matter what age) be so far from home and be sick so suddenly. Plus, I am not well enough to travel, so there was no way I could fly out to be there with him and I felt awful about that. Thankfully, he kept in touch several times each day and I also received updates from his medical team. I'm so grateful that he is now on the mend but it's going to take a long time for his knee to be back to normal and to be out of pain. And, the timing is terrible, since he is also in the process moving and changing jobs all on top of being in pain! Argh!! Hectic and stress for all!!
On top of that, I also ended up in the ER on the Friday night of Labor Day Weekend with intense belly pain and a fever (just two days after my Infusion) and any time you develop a fever over 100.5, after treatment, you need to call your Gynecologist, which is what I did and she sent me to the ER. We spent six hours there and had a tons of labs, a chest x-ray and a CT of my Lung and Abdomen which showed I have Pneumonia in my left lung...UGH! I was discharged that night as the initial reports looked good, but the day day, the ER doc who had treated me called to tell me the the second reading of my scans, clearly showed the Pneumonia. She then contacted my Oncologist and by then my fever was gone. I was exhausted, but otherwise okay. I also had/have a type of "Walking Pneumonia" and although she did call me in a RX for antibiotics, she told me not to take them unless the fever comes back for any symptoms, luckily that has not happened. I have no cough, pain or shortness of breath, just the same old fatigue and nausea and of course the bouts of belly pain, that we still don't really understand. My belly CT scan was fine and there was NO new cancer!! I'll be seeing Dr. Sunkara on the 21st, but we know that I need to again stop the Opdivo, as it is the cause of this and now it's more likely I will not be able to go back on it. So back the the drawing board for a new game plan? Hoping for the best and still taking One Day at a Time!
Friday, July 22, 2016
My latest update.....
I am a bit behind in keeping this blog updated, but that's also because I have not had a lot of news to share lately. I have been on a treatment break since May and this week is the first time I've been back to see my Oncologist/
I started the week with new CT Scans (on Monday) and saw Dr. Sunkara on Tuesday for the results which are basically good. My tumor has continued to shrink and the newer nodules that showed on my May Scan are now gone. But, now I have "Pneumonitis" which is a broad term given to various types of "Lung Inflammations" - those not caused by an infection, like Pneumonia as an example. It's also a VERY common side effect of Opdivo and can become quite serious, even fatal. Thankfully, mine is mild, and is asymptomatic, which is good, because it means that I do not need treatment, which would be Steroids, usually Prednisone, which is truly hate. It's just one of the drugs that does not agree with me and it makes me turn into a "bitch". I feel like it changes my personality and I hate how it makes me feel. Plus, it's also a drug that makes the Immunotherapy drug, less effective, so they don't want to give it too often or for too long when you are on this type of therapy. If I develop any symptoms (cough, shortness of breath, chest pain, difficulty breathing, etc., ) then I need to call right away and determine what is next.
The downside, is that I need to stay off the the Opdivo for a least four more weeks and will be re-evaluated at that time. We know that the Opdivo continues to work, even on a a treatment break, but that won't last forever and since it's worked so well for me (despite the side effects), I know I don't have a lot of other options. I also am somewhat fearful of having the Pneumonitis get worse and know that if that happens for too long, they will take me off the the Opdivo, and that could be permanent. We do hope it will clear on it's own and it has improved somewhat since the Bronch, but is also now in my left lung, whereas it was only in my right lung (tumor lung) before.
I also saw Dr. Mouchantif (my Pulmonary Surgeon) for my one month follow up (to the Bronchoscopy) and he had already seen my scans and had also consulted with Dr. Sunkara. They they both feel this will clear and hopefully not come back.
My belly CT Scan was fine, which is awesome and I have not had any new isuses with the belly pain or diarrhea that was so awful in the past. Dr. Sunkara also prescribed me Lomitil which I will now have "on hand" to take, if I have any more of those miserable bouts. It's a med that will help quickly alleviate the awful cramping pain and will also to prevent the severe diarrhea. I am happy to know I have this "Just in case", but do hope I won't need to use it and that those bouts are over. But, again, this is also a known side effect of the Opdivo and may return when I go back on it. As you can guess, this is not easy and these issues have always been worrisome. This treatment is still do new and has so many potential side effects. But, it also works so well for many, including me and that's why I know feel it's my best option. It's done a fantastic job with my tumor and there are NO signs of any new cancer, and that is all very promising.
The hard part is that I still feel crappy and the fatigue is still horrible. There has been NO improvement and this week my nausea is worse than it had been for quite some time? I'm back to taking Zofran almost daily and despite naps, I still am exhausted. And I'm finding I really now mine the Summer heat. I can no longer tolerate high temps or high humidity and we've had some hot days lately. Thankfully we have central AC now, so I am very comfy and cool at home, but staying inside all the the time, is not fun. We do that ALL winter and typically I want to be outside as much as I can in the Summer. To think I was once a HUGE beach lover and would spend countless hours there every year, I absolutely loved it and it was my favorite place to be. I really do miss that, but right now, it would only make me feel worse and that's not at all how I want to feel.
Overall, I am very thankful and grateful that my tumor is now tiny and that my brain tumor has never returned. But, boy would I like to feel better and be able to get out a lot more. I miss a lot of events, because I feel to tired or just too lousy to go. No one wants to go out and do things when you feel sick and most days I still feel like I have the Flu. I also miss traveling to San Diego and loved seeing Brian more, but it's not worth it now, plus money is tight with all my medical expenses and our lousy coverage. I do HOPE for better days and hope the fatigue and overall sick feeling will at some point improve. I really hate the idea of living the rest of my life, feeling like I do now. I have my new Grand Baby coming and want to be able to baby sit and spend lots of time with him/her!
Hoping for better days, but also grateful to know that my treatment is working and still hoping that they will fine a cure or better treatment very soon!!
I started the week with new CT Scans (on Monday) and saw Dr. Sunkara on Tuesday for the results which are basically good. My tumor has continued to shrink and the newer nodules that showed on my May Scan are now gone. But, now I have "Pneumonitis" which is a broad term given to various types of "Lung Inflammations" - those not caused by an infection, like Pneumonia as an example. It's also a VERY common side effect of Opdivo and can become quite serious, even fatal. Thankfully, mine is mild, and is asymptomatic, which is good, because it means that I do not need treatment, which would be Steroids, usually Prednisone, which is truly hate. It's just one of the drugs that does not agree with me and it makes me turn into a "bitch". I feel like it changes my personality and I hate how it makes me feel. Plus, it's also a drug that makes the Immunotherapy drug, less effective, so they don't want to give it too often or for too long when you are on this type of therapy. If I develop any symptoms (cough, shortness of breath, chest pain, difficulty breathing, etc., ) then I need to call right away and determine what is next.
The downside, is that I need to stay off the the Opdivo for a least four more weeks and will be re-evaluated at that time. We know that the Opdivo continues to work, even on a a treatment break, but that won't last forever and since it's worked so well for me (despite the side effects), I know I don't have a lot of other options. I also am somewhat fearful of having the Pneumonitis get worse and know that if that happens for too long, they will take me off the the Opdivo, and that could be permanent. We do hope it will clear on it's own and it has improved somewhat since the Bronch, but is also now in my left lung, whereas it was only in my right lung (tumor lung) before.
I also saw Dr. Mouchantif (my Pulmonary Surgeon) for my one month follow up (to the Bronchoscopy) and he had already seen my scans and had also consulted with Dr. Sunkara. They they both feel this will clear and hopefully not come back.
My belly CT Scan was fine, which is awesome and I have not had any new isuses with the belly pain or diarrhea that was so awful in the past. Dr. Sunkara also prescribed me Lomitil which I will now have "on hand" to take, if I have any more of those miserable bouts. It's a med that will help quickly alleviate the awful cramping pain and will also to prevent the severe diarrhea. I am happy to know I have this "Just in case", but do hope I won't need to use it and that those bouts are over. But, again, this is also a known side effect of the Opdivo and may return when I go back on it. As you can guess, this is not easy and these issues have always been worrisome. This treatment is still do new and has so many potential side effects. But, it also works so well for many, including me and that's why I know feel it's my best option. It's done a fantastic job with my tumor and there are NO signs of any new cancer, and that is all very promising.
The hard part is that I still feel crappy and the fatigue is still horrible. There has been NO improvement and this week my nausea is worse than it had been for quite some time? I'm back to taking Zofran almost daily and despite naps, I still am exhausted. And I'm finding I really now mine the Summer heat. I can no longer tolerate high temps or high humidity and we've had some hot days lately. Thankfully we have central AC now, so I am very comfy and cool at home, but staying inside all the the time, is not fun. We do that ALL winter and typically I want to be outside as much as I can in the Summer. To think I was once a HUGE beach lover and would spend countless hours there every year, I absolutely loved it and it was my favorite place to be. I really do miss that, but right now, it would only make me feel worse and that's not at all how I want to feel.
Overall, I am very thankful and grateful that my tumor is now tiny and that my brain tumor has never returned. But, boy would I like to feel better and be able to get out a lot more. I miss a lot of events, because I feel to tired or just too lousy to go. No one wants to go out and do things when you feel sick and most days I still feel like I have the Flu. I also miss traveling to San Diego and loved seeing Brian more, but it's not worth it now, plus money is tight with all my medical expenses and our lousy coverage. I do HOPE for better days and hope the fatigue and overall sick feeling will at some point improve. I really hate the idea of living the rest of my life, feeling like I do now. I have my new Grand Baby coming and want to be able to baby sit and spend lots of time with him/her!
Hoping for better days, but also grateful to know that my treatment is working and still hoping that they will fine a cure or better treatment very soon!!
Wednesday, June 22, 2016
No New Cancer!!!
Woohoo! I had my Bronochosopy last Friday, which went very well. Just heard from my Pulmonary Surgeon today and found out that there is NO new Cancer, which is wonderful news. Apprantely, the changes in my lung are a reaction to the Opdivo treaments, so I will be taking a "much-needed" break from the Infusion for another few weeks. I am very happy about that as it has really been wiping me out, I do hope the break, will allow me to gain back some energy and stamina.
I go back for my next CT Scans on July 18th and then will meet with Dr. Sunkara the next morning to review them and also make a determination as to whether or not I can re-start the Opdivo, or whether I will need to HOPE for other option. We has a long discussion at my appointment yesterday and she told me, she really wants me on it, since it clearly has worked wonders in reducing what was a very large and aggressive tumor. She also told me, that often when they see a tumor come back, that fast and so fierce, many patient's lose their battle within the next six months. I know now, that I'm one lucky lady and very happy that it responded so well to the Opdivo. As much as I hate the side effects - constant fatigue, nausea, over all weakness and such, I know fully realize how well it has worked for me. I had been on the strongest Chemo drugs currently available to treat Lung Cancer and they did not work, so Opdivo (Immunotherapy), looks like it my only HOPE at this time and now I have to hope I can go back on it.
In the meantime, I am very much looking forward to having a few weeks off and really want to try and enjoy Summer, especially since it's my favorite season. I'm still pretty wiped out and not feeling so great today, but did have a really good weekend -- best on in months, so I'm hoping that trend will continue.
I go back for my next CT Scans on July 18th and then will meet with Dr. Sunkara the next morning to review them and also make a determination as to whether or not I can re-start the Opdivo, or whether I will need to HOPE for other option. We has a long discussion at my appointment yesterday and she told me, she really wants me on it, since it clearly has worked wonders in reducing what was a very large and aggressive tumor. She also told me, that often when they see a tumor come back, that fast and so fierce, many patient's lose their battle within the next six months. I know now, that I'm one lucky lady and very happy that it responded so well to the Opdivo. As much as I hate the side effects - constant fatigue, nausea, over all weakness and such, I know fully realize how well it has worked for me. I had been on the strongest Chemo drugs currently available to treat Lung Cancer and they did not work, so Opdivo (Immunotherapy), looks like it my only HOPE at this time and now I have to hope I can go back on it.
In the meantime, I am very much looking forward to having a few weeks off and really want to try and enjoy Summer, especially since it's my favorite season. I'm still pretty wiped out and not feeling so great today, but did have a really good weekend -- best on in months, so I'm hoping that trend will continue.
Thursday, June 2, 2016
Happy June!!!
....the time is flying by, but right now with the wonderful Summer weather arriving, I'd be very happy for things to slow down, so we can all enjoy a wonderful Summer. It is by far my favorite season and always has been. I just wish and HOPE that I will be able to take a break from treatment, so that I can build up some strength and truly enjoy the season.
Not sure, where I left off, but I finally did have my Brain MRI, down at Lahey Hospital in Burlington, two week ago and have great news. The brain tumor is still gone and all they see is a tiny blip, which is considered scar tissue, they are NO new tumors and now we thing the headaches and dizziness are being caused by the Opdivo. I had my 12 Opdivo Infusion on Tuesday and also again me with Dr. Sunkara to see if there is anything I can do to feel better. The fatigue is horrible and I still find I need to nap every day...and far more on the weeks after my Infusion. I also still ahve nausea, headaches and nausea and that awful taste in my mouth, which makes all foods now taste terrible and makes it hard to even want to eat. I do eat (at least one meal daily), usually supper, because that is when I'm mot hungry.
After the Oncology team review my Chest CT Results, (there are three new nodules that appeared and were not seen on my last scan). They are all tiny 5mm, 3mm and smaller, but nonetheless are new and now I have to have a biopsy to find out if indeed that may be Cancer. UGH! But, like all tests and new appointments nothing goes fast....and it's already been almost two weeks waiting to get in to see the Pulmonary Specialist who will do the biopsy via Bronchoscopy- Dr. Faris Mouchantaf. I was hoping they could simply book the procedure, (I had one done way back, when I was in Lahey/Burlington), when this all first started. But, since this is a new and different MD, I must first go in for the consult, which will be next Thursday (June 9th). I just HOPE that once he informs me and I sign the consents etc, that we can get this over and gone with. It has to be done a Lahey/Beverly, as they don't do them in Gloucester, which is a bummer, since I love my local Lahey, and would much rather have all my care there. I do feel VERY fortunate that we have such an amazing Oncology Unit and that it's only ten minutes from my house. I also greatly admire Dr. Sunkara and am very happy she has office hours here too!
Now, I jsut wait and for me waiting is hard, I want to move forward and know where is stand. HOPING these nodules are no cancer, so I can take the much-needed six week break from Opdivo. If however, the are cancer, we'll need a new game plan and one of which may be going back to Dana Farber in Boston in one of their Clincial Trials..and to be honest that option will truly be a hard ddeciosn to make. I'm not a fan of being a Guinea pig and already feel that way on Opdivo, after it's it's only been FDA approved since November and there are still a lot of unknows about this drug. On top of that getting to and from Dana Farber is pretty much a nightmare for me. It's well over an hour away (on a good traffic day) and right in Downtown Boston, and it's not a drive I can make on my own, so that's huge determint too! UGH! But, I'm trying to think positive and hope it won't come to that. Dr. Sunkara does not think these nodules are "disease progression" and said if she had it to give it a number she feels there is only a 20% chance of them being cancer -- which is good news.
Thanks for thinking of me.....!!
Not sure, where I left off, but I finally did have my Brain MRI, down at Lahey Hospital in Burlington, two week ago and have great news. The brain tumor is still gone and all they see is a tiny blip, which is considered scar tissue, they are NO new tumors and now we thing the headaches and dizziness are being caused by the Opdivo. I had my 12 Opdivo Infusion on Tuesday and also again me with Dr. Sunkara to see if there is anything I can do to feel better. The fatigue is horrible and I still find I need to nap every day...and far more on the weeks after my Infusion. I also still ahve nausea, headaches and nausea and that awful taste in my mouth, which makes all foods now taste terrible and makes it hard to even want to eat. I do eat (at least one meal daily), usually supper, because that is when I'm mot hungry.
After the Oncology team review my Chest CT Results, (there are three new nodules that appeared and were not seen on my last scan). They are all tiny 5mm, 3mm and smaller, but nonetheless are new and now I have to have a biopsy to find out if indeed that may be Cancer. UGH! But, like all tests and new appointments nothing goes fast....and it's already been almost two weeks waiting to get in to see the Pulmonary Specialist who will do the biopsy via Bronchoscopy- Dr. Faris Mouchantaf. I was hoping they could simply book the procedure, (I had one done way back, when I was in Lahey/Burlington), when this all first started. But, since this is a new and different MD, I must first go in for the consult, which will be next Thursday (June 9th). I just HOPE that once he informs me and I sign the consents etc, that we can get this over and gone with. It has to be done a Lahey/Beverly, as they don't do them in Gloucester, which is a bummer, since I love my local Lahey, and would much rather have all my care there. I do feel VERY fortunate that we have such an amazing Oncology Unit and that it's only ten minutes from my house. I also greatly admire Dr. Sunkara and am very happy she has office hours here too!
Now, I jsut wait and for me waiting is hard, I want to move forward and know where is stand. HOPING these nodules are no cancer, so I can take the much-needed six week break from Opdivo. If however, the are cancer, we'll need a new game plan and one of which may be going back to Dana Farber in Boston in one of their Clincial Trials..and to be honest that option will truly be a hard ddeciosn to make. I'm not a fan of being a Guinea pig and already feel that way on Opdivo, after it's it's only been FDA approved since November and there are still a lot of unknows about this drug. On top of that getting to and from Dana Farber is pretty much a nightmare for me. It's well over an hour away (on a good traffic day) and right in Downtown Boston, and it's not a drive I can make on my own, so that's huge determint too! UGH! But, I'm trying to think positive and hope it won't come to that. Dr. Sunkara does not think these nodules are "disease progression" and said if she had it to give it a number she feels there is only a 20% chance of them being cancer -- which is good news.
Thanks for thinking of me.....!!
Monday, May 23, 2016
Summer is almost here....
....and it is by far my favorite season, so I hope we have a really good Summer with lots of gorgeous Sun-filled days!
It's hard to believe that it has been almost a month since I posted my last update. It has not been a great month, but I am looking forward to happier and healthier days! I'm still really struggling with intense fatigue, which is a very common side-effect of the Opdivo, which I've now been on since December. I completed my 11th Infusion last week and also went though another round of CT Scans and a Brain MRI.
Thankfully, the MRI was fine - I was really scared this time, since I have also been having some headaches and dizziness, form time to time -- which we now assume is also from the Opdivo. I also head new CT Scans last Monday (Chest, Abdomen and Pelvic) with mixed results. The Abdomen and Pelvic were great, no signs of any cancer or anything unusual. But, the Chest scan showed three "tiny"new nodules on my lung (the largest was only 3mm, which is good and is most-often not considered anything to worry about). Even so, I would have loved for that scan to have been clean too as it had been in January and in March.
Dr. Sunkara (my Primary Oncologist) is now presenting my case (today) to the Cancer Team Board, where all the of the Oncologist meet every Monday to review certain cases. We had hoped that ALL my scans would be clear and that would have allowed me to take a "break" form treatment for awhile, and we hoped in that time I could build up some energy and strength again. I will be seeing her tomorrow to talk about the outcome of the meeting and also to determine what the next course of treatment will be. Opdivo is clearly working very well (and does seem to be a wonderful drug) for those who are battling Stage IV Non-Small Cell Lung Cancer like me. I am now a member of a wonderful online forum that was started for patients who are on this treatment and most of them are doing wonderful and are now "NED" also known as "No Evidence of Disease" or in a form a Remission (although Remission is the term typically used for "Blood" Cancers. If you are not familiar with Opdivo, it's a newly FDA approved treatment and is an "Immunotherapy" drug that is infused, just like Chemo, and is typically used for patients who did not respond well to traditional Chemo or those (like me, who did initially but then had the tumor return). My Lung tumor was gone late last August, but came back rather aggressively in November. Here is a brand new NEWS report about Opdivo, that was just released today. I'm sure you may have also seen some of the "Ads" on TV about Opdivo.
Recently, I have been much more depressed and hate the fact that I'm having to spend so much time "sleeping" and that I can't do much of anything and feel well. I am also now finding that eating is a challenge and I can't find any foods that seem to taste good, which is not fun. I also not have much of an appetite, but need to eat for nutritional purposes. All foods seem to have an odd taste and I wake up every day, feeling kind of nauseous with that awful taste in my mouth...NO fun!
I am trying very hard to continue to fight this battle, but it does get harder and harder, especially with no end or good news on the horizon. Currently, there still is not a cure for late stage Lung Cancer and I can only HOPE that these meds will help me fight it until there is a chance for a new cure. But, I am exhausted and if I continue to feel this poorly, then I know there will be a time I will stop treatments so that I can try and feel better and have some good Quality time--quantity is not nearly as important when you are sick day and day. I honestly hate that I am spending so much time sleeping and napping, just to get through the day and I need to feel better.....
Still taking One Day at a Time, and still hoping for a miracle. I also really want to try to go back to San Diego, at least one more time and am hoping to do that again in September. I truly LOVE being there and always love spending time with Brian. He hopes to be home over the Summer, even if only for a short trip, which would make us all very happy. He has not been home in close to 18 months and we all miss him. I'm lucky that I've been out to see him five times in the past year, but right now I am way too tired to travel and it would not be an enjoyable time to go there and have to spend my time 'sleeping'...!
Crossing my fingers that I'll have some "good" news from Dr. Sunkara tomorrow and that I can truly enjoy my Summer!
It's hard to believe that it has been almost a month since I posted my last update. It has not been a great month, but I am looking forward to happier and healthier days! I'm still really struggling with intense fatigue, which is a very common side-effect of the Opdivo, which I've now been on since December. I completed my 11th Infusion last week and also went though another round of CT Scans and a Brain MRI.
Thankfully, the MRI was fine - I was really scared this time, since I have also been having some headaches and dizziness, form time to time -- which we now assume is also from the Opdivo. I also head new CT Scans last Monday (Chest, Abdomen and Pelvic) with mixed results. The Abdomen and Pelvic were great, no signs of any cancer or anything unusual. But, the Chest scan showed three "tiny"new nodules on my lung (the largest was only 3mm, which is good and is most-often not considered anything to worry about). Even so, I would have loved for that scan to have been clean too as it had been in January and in March.
Dr. Sunkara (my Primary Oncologist) is now presenting my case (today) to the Cancer Team Board, where all the of the Oncologist meet every Monday to review certain cases. We had hoped that ALL my scans would be clear and that would have allowed me to take a "break" form treatment for awhile, and we hoped in that time I could build up some energy and strength again. I will be seeing her tomorrow to talk about the outcome of the meeting and also to determine what the next course of treatment will be. Opdivo is clearly working very well (and does seem to be a wonderful drug) for those who are battling Stage IV Non-Small Cell Lung Cancer like me. I am now a member of a wonderful online forum that was started for patients who are on this treatment and most of them are doing wonderful and are now "NED" also known as "No Evidence of Disease" or in a form a Remission (although Remission is the term typically used for "Blood" Cancers. If you are not familiar with Opdivo, it's a newly FDA approved treatment and is an "Immunotherapy" drug that is infused, just like Chemo, and is typically used for patients who did not respond well to traditional Chemo or those (like me, who did initially but then had the tumor return). My Lung tumor was gone late last August, but came back rather aggressively in November. Here is a brand new NEWS report about Opdivo, that was just released today. I'm sure you may have also seen some of the "Ads" on TV about Opdivo.
Recently, I have been much more depressed and hate the fact that I'm having to spend so much time "sleeping" and that I can't do much of anything and feel well. I am also now finding that eating is a challenge and I can't find any foods that seem to taste good, which is not fun. I also not have much of an appetite, but need to eat for nutritional purposes. All foods seem to have an odd taste and I wake up every day, feeling kind of nauseous with that awful taste in my mouth...NO fun!
I am trying very hard to continue to fight this battle, but it does get harder and harder, especially with no end or good news on the horizon. Currently, there still is not a cure for late stage Lung Cancer and I can only HOPE that these meds will help me fight it until there is a chance for a new cure. But, I am exhausted and if I continue to feel this poorly, then I know there will be a time I will stop treatments so that I can try and feel better and have some good Quality time--quantity is not nearly as important when you are sick day and day. I honestly hate that I am spending so much time sleeping and napping, just to get through the day and I need to feel better.....
Still taking One Day at a Time, and still hoping for a miracle. I also really want to try to go back to San Diego, at least one more time and am hoping to do that again in September. I truly LOVE being there and always love spending time with Brian. He hopes to be home over the Summer, even if only for a short trip, which would make us all very happy. He has not been home in close to 18 months and we all miss him. I'm lucky that I've been out to see him five times in the past year, but right now I am way too tired to travel and it would not be an enjoyable time to go there and have to spend my time 'sleeping'...!
Crossing my fingers that I'll have some "good" news from Dr. Sunkara tomorrow and that I can truly enjoy my Summer!
Thursday, April 28, 2016
....a new update.....
The battle continues and is truly not as easy as I had hoped. After fighting this nasty cancer for over a year now, it's getting harder and harder. The side effects of the Opdivo for me, are a relentless fatigue and I spend a lot more time sleeping, which is NOT how I want to spend my life.
I'm also now having some headaches and slight dizziness and because of my history, my Oncologist ordered Brain CT Scan, which was done on Monday. Unfortunately, the results were Inconclusive, so I'm now being booked for an MRI. And for me and MRI is hell, because I'm extremely claustrophobic and need to be put 'under anesthesia' to have one done. It also has to be done at Lahey in Burlington, which is a long drive for us and not a place I enjoy going. If you know my original story, you'll know I was sent there by ambulance from my local Lahey back on 3/27/15, when they found my original brain tumor. I spend a full week there and learned I had Stage IV Incurable Lung Cancer that had spread to my brain...UGH!!
On the upside, Dr. Sunkara has my CT scan reviews by a few docs and she feels it is fine..but this will be done to be on the safe side. Lahey Burlington is also where my Neuro Oncologist is and he (Dr. Dempsey) is an fantastic doctor. I'm also grateful that I had my SRS Brain Radiation done there and since that time (Last May) the tumor has been gone ! The CT Scan did not show any swelling, very positive, as I had a huge amount of swelling, last March....another positive note.
Monday I'm back at my Lahey for my Lab work and then Opdivo #10 on Tuesday. I actually asked for a break this week, as we have a big family Wedding on Saturday and I really want to be there and feel decent and having extra time off, should help with the fatigue. I also now have meds for the headaches and take them PRN-- I hate pain meds, so I limit them to the times, then I really need them.
Happily, April is almost over--a very sad month for me! Lost my daughter on April 19th, my Dad on April 21st and my brother on April 29th, which is tomorrow. Still miss you Greg and can hardly believe that 17 years have passed since that horrific accident. I still hope and pray you are at Peace.....but truly wish you were still "Down the Cove, having a Beer".....!
My brother Greg an awesome guy,
I don't know why you had to die.
You were so cute as a little boy,
You smiled at us and brought us joy.
Even though we had our little fights,
Over silly things like phone lines and wiring lights,
I never wanted to be a pest,
I needed your skills, cause you're the best.
I'm glad those times, were only a few,
It was hard for me to argue with you,
But that's just me, as you are you,
And in the end you always came through.
This is Lanesville where you are from,
We all are here with Deb and Mom,
Our hearts are broken, as you know,
We really can't bear to let you go.
Sometimes you were so crazy and loony,
Especially with the friends who call you "Cooney",
I know that everyone here will agree with me,
That the Lanesville Crew is the best there could ever be.
We wish so much that you were here,
Or just down "The Cove" havin' a beer.
It's happy thoughts that will get us through,
Like all the fun we shared with you.
And now my poem will come to an end,
Until the day we meet again,
I pray that you are now at peace.
Goodbye Greg With Love From Lis
I'm also now having some headaches and slight dizziness and because of my history, my Oncologist ordered Brain CT Scan, which was done on Monday. Unfortunately, the results were Inconclusive, so I'm now being booked for an MRI. And for me and MRI is hell, because I'm extremely claustrophobic and need to be put 'under anesthesia' to have one done. It also has to be done at Lahey in Burlington, which is a long drive for us and not a place I enjoy going. If you know my original story, you'll know I was sent there by ambulance from my local Lahey back on 3/27/15, when they found my original brain tumor. I spend a full week there and learned I had Stage IV Incurable Lung Cancer that had spread to my brain...UGH!!
On the upside, Dr. Sunkara has my CT scan reviews by a few docs and she feels it is fine..but this will be done to be on the safe side. Lahey Burlington is also where my Neuro Oncologist is and he (Dr. Dempsey) is an fantastic doctor. I'm also grateful that I had my SRS Brain Radiation done there and since that time (Last May) the tumor has been gone ! The CT Scan did not show any swelling, very positive, as I had a huge amount of swelling, last March....another positive note.
Monday I'm back at my Lahey for my Lab work and then Opdivo #10 on Tuesday. I actually asked for a break this week, as we have a big family Wedding on Saturday and I really want to be there and feel decent and having extra time off, should help with the fatigue. I also now have meds for the headaches and take them PRN-- I hate pain meds, so I limit them to the times, then I really need them.
Happily, April is almost over--a very sad month for me! Lost my daughter on April 19th, my Dad on April 21st and my brother on April 29th, which is tomorrow. Still miss you Greg and can hardly believe that 17 years have passed since that horrific accident. I still hope and pray you are at Peace.....but truly wish you were still "Down the Cove, having a Beer".....!
Goodbye, My Brother
by Lisa
I don't know why you had to die.
You were so cute as a little boy,
You smiled at us and brought us joy.
Even though we had our little fights,
Over silly things like phone lines and wiring lights,
I never wanted to be a pest,
I needed your skills, cause you're the best.
I'm glad those times, were only a few,
It was hard for me to argue with you,
But that's just me, as you are you,
And in the end you always came through.
This is Lanesville where you are from,
We all are here with Deb and Mom,
Our hearts are broken, as you know,
We really can't bear to let you go.
Sometimes you were so crazy and loony,
Especially with the friends who call you "Cooney",
I know that everyone here will agree with me,
That the Lanesville Crew is the best there could ever be.
We wish so much that you were here,
Or just down "The Cove" havin' a beer.
It's happy thoughts that will get us through,
Like all the fun we shared with you.
And now my poem will come to an end,
Until the day we meet again,
I pray that you are now at peace.
Goodbye Greg With Love From Lis
Tuesday, April 19, 2016
In Loving Memory....
It's almost impossible to believe that 25 years has passed.
One of the most heartbreaking days of my life....
One of the most heartbreaking days of my life....
Saturday, April 2, 2016
Opdivo and me....
....not so happy with the Opdivo side effects right now. Thankfully, they are not the serious side effects, but I'm so exhausted and weak, that I'm spending most of my time in bed -- sleeping or resting and that is not fun. I'm also still having lots of nausea and this week when I had my labs, my Potassium was so low that I need to start with a 2 hours infusion of that before my Opdivo, which made a long day in Oncology.
I'm also really bummed, because I can't do anything...I am not creating, not going out, missing out of fun craft workshops and now had to cancel a Craft Retreat I was planning to attend next weekend, which I was so happy about. Bought my seat back in February, and now, because of this damn cancer I can't go! I had planned to dive down a day early (it's in RI) and stay in a hotel that night, I know I could never make it through six hours of creating and then drive home (2+ hours)...and sadly I lost on on the money I paid for the class since it's non-refundable. Luckly, I cancelled the hotel in time so that I will not lose anything on that.
Still also am losing over $500 after buying (4) Tickets to the Billy Joel Concert at Fenway Park, coming up on my actual Birthday in August. I thought for sure my four BFF's would want to go again and while two of us do want to go, two backed out, making it impossible for us to go alone (we can't afford the limo with only two)...sucks! If you are in the Boston area, would want to buy 2-4 tickets, PLEASE let me know. Selling them at the exact costs which is $132.00 each and I purchased them direct from the Red Sox. Plus, the concert is sold out too, so this is great price. When the weather is better I'll have to list them on Stub Hub, etc., but hoping I can sell them to other friends who want to go. We went last year and LOVED it, so I really want to go again!
Anyway...life is not fun or good right now. My son also got laid off from his new job, he was only there 2 months, and that all happened this week too.....as they say when it rains, it pours....and of ya, we may have snow coming again too---and it's April. UGH!!
Bye bye for now...hoping for better days soon....................
I'm also really bummed, because I can't do anything...I am not creating, not going out, missing out of fun craft workshops and now had to cancel a Craft Retreat I was planning to attend next weekend, which I was so happy about. Bought my seat back in February, and now, because of this damn cancer I can't go! I had planned to dive down a day early (it's in RI) and stay in a hotel that night, I know I could never make it through six hours of creating and then drive home (2+ hours)...and sadly I lost on on the money I paid for the class since it's non-refundable. Luckly, I cancelled the hotel in time so that I will not lose anything on that.
Still also am losing over $500 after buying (4) Tickets to the Billy Joel Concert at Fenway Park, coming up on my actual Birthday in August. I thought for sure my four BFF's would want to go again and while two of us do want to go, two backed out, making it impossible for us to go alone (we can't afford the limo with only two)...sucks! If you are in the Boston area, would want to buy 2-4 tickets, PLEASE let me know. Selling them at the exact costs which is $132.00 each and I purchased them direct from the Red Sox. Plus, the concert is sold out too, so this is great price. When the weather is better I'll have to list them on Stub Hub, etc., but hoping I can sell them to other friends who want to go. We went last year and LOVED it, so I really want to go again!
Anyway...life is not fun or good right now. My son also got laid off from his new job, he was only there 2 months, and that all happened this week too.....as they say when it rains, it pours....and of ya, we may have snow coming again too---and it's April. UGH!!
Bye bye for now...hoping for better days soon....................
Friday, March 25, 2016
Checking in....
......time is flying by, I am so happy that Spring is now here, but do wish our weather would be more Spring-like, it's cold and we even had snow the on the first day of Spring. Thankfully, it did warm up the next day and the warm Spring sun melted away all the snow.
My Opdivo treatments are gong well, still having them every two weeks, but I am not noticing that I am pretty wiped out for up to a week each time and have had more nausea and belly aches. Nothing extremely painful, but some days were pretty lousy and I spent a lot of time in bed. NO fun!
I'm finally feeling better, but my next treatment is coming up on Tuesday and that's only a few day away now.
It's hard to believe, but it will also be One Year since I was first diagnosed, this Sunday (Easter), on March 27th. A date, I'll never forget. And boy have I been through a lot in that year. Sometimes I feels like I've had Cancer much longer and then in some ways it's hard to believe a year has passed. But, considering I have Stage IV Cancer that had spread to my brain before I even knew, I am thankful to be alive and happy that my treatments are working. Because my cancer is "Late Stage" I am technically still considered "incurable" but treatable, so that's also a good thing. Just one year ago, Opdivo was not even FDA approved for my type of Lung Cancer and I know in many ways I'm now lucky to that I have it.
For whose of you who may be new to this blog, I had a specialized form of radiation (SRS) last May for my brain tumor and it has been gone since -- YAY! I then had chemo for my Lung tumor and that was also gone in August, but came back with a vengeance in November. I then had a quick course of high dose Radiation done, and started on this new treatment (also infused, like Chemo), but is a form of Immunotherapy. Now many feel that this type of treatment will eventually be what cures cancer. I hope they are right.
As you may remember I almost did not opt to try this drug. The side effects (some fatal and ver serious) really scared me, and that time, with it also being so new, I was too scared to try it. But, I did some research, talked to my PCP and also has several talks with my Primary Oncologist (Dr. Sunkara) and decided to try it. So far, so good, but I know that for many, the "bad" side effects do not show up at first, so we are being very cautious and I have a long list of changes that I must immediately report to my the team. I have had the belly aches and that did scare me, but the Abdominal CT scan was fine, and they will continue to monitor me. I also have lab work done every week, to watch for any other changes, the drug is known for.
One of the many reasons I chose to try it was because of the people I met through an online Medical forum, who are one Opdivo, many were part of the Clinical trials and reading their stories what made me chance my mind. The group is on Inspire.com and has several sub-groups all based on types of cancer and other illnesses. I also found, CancerGrace, a medical based group with a wealth of information for patients or their families.
My new task in life is trying to organize my life (stuff), and as a Paper-crafter (a hobby I LOVE), I know have literally 100's of items that I'm now going to slowly sell. There is simply no way my dear Hubby will ever know what to do with all of this and right now we can put the money to good use toward all my medical expenses. You can find all my "Craft Sale Goodies" on my craft blog - ThePurplePlace. Please stop by and please feel free to share!
Wishing you all a wonderful weekend and for those of you who celebrate it, Happy Easter!
My Opdivo treatments are gong well, still having them every two weeks, but I am not noticing that I am pretty wiped out for up to a week each time and have had more nausea and belly aches. Nothing extremely painful, but some days were pretty lousy and I spent a lot of time in bed. NO fun!
I'm finally feeling better, but my next treatment is coming up on Tuesday and that's only a few day away now.
It's hard to believe, but it will also be One Year since I was first diagnosed, this Sunday (Easter), on March 27th. A date, I'll never forget. And boy have I been through a lot in that year. Sometimes I feels like I've had Cancer much longer and then in some ways it's hard to believe a year has passed. But, considering I have Stage IV Cancer that had spread to my brain before I even knew, I am thankful to be alive and happy that my treatments are working. Because my cancer is "Late Stage" I am technically still considered "incurable" but treatable, so that's also a good thing. Just one year ago, Opdivo was not even FDA approved for my type of Lung Cancer and I know in many ways I'm now lucky to that I have it.
For whose of you who may be new to this blog, I had a specialized form of radiation (SRS) last May for my brain tumor and it has been gone since -- YAY! I then had chemo for my Lung tumor and that was also gone in August, but came back with a vengeance in November. I then had a quick course of high dose Radiation done, and started on this new treatment (also infused, like Chemo), but is a form of Immunotherapy. Now many feel that this type of treatment will eventually be what cures cancer. I hope they are right.
As you may remember I almost did not opt to try this drug. The side effects (some fatal and ver serious) really scared me, and that time, with it also being so new, I was too scared to try it. But, I did some research, talked to my PCP and also has several talks with my Primary Oncologist (Dr. Sunkara) and decided to try it. So far, so good, but I know that for many, the "bad" side effects do not show up at first, so we are being very cautious and I have a long list of changes that I must immediately report to my the team. I have had the belly aches and that did scare me, but the Abdominal CT scan was fine, and they will continue to monitor me. I also have lab work done every week, to watch for any other changes, the drug is known for.
One of the many reasons I chose to try it was because of the people I met through an online Medical forum, who are one Opdivo, many were part of the Clinical trials and reading their stories what made me chance my mind. The group is on Inspire.com and has several sub-groups all based on types of cancer and other illnesses. I also found, CancerGrace, a medical based group with a wealth of information for patients or their families.
My new task in life is trying to organize my life (stuff), and as a Paper-crafter (a hobby I LOVE), I know have literally 100's of items that I'm now going to slowly sell. There is simply no way my dear Hubby will ever know what to do with all of this and right now we can put the money to good use toward all my medical expenses. You can find all my "Craft Sale Goodies" on my craft blog - ThePurplePlace. Please stop by and please feel free to share!
Wishing you all a wonderful weekend and for those of you who celebrate it, Happy Easter!
Wednesday, March 9, 2016
More on my Cancer and CT Results...
After a fun morning at a Stampin' Up workshop, I returned home to head to the hospital for my bi-weekly lab work and appointment with Dr. Sunkara. When I arrived there I found out that I would not be having an Infusion, today, as planned, since it's too early and it needs to be two weeks from the last one, before insurance will cover it. No shock there, and I guess I'm happy to get a little break and will be back there next Monday for Labs and Tuesday for Opdivo # 7.
Luckily, I did spend some time with Dr. Sunkara, and as I pretty much knew, I'm doing well with the cancer and currently in a form of remission, but as of now, there is still no known cure for my type and stage of lung cancer! It's still treatable and I'm still fighting, but I have to face that I may very well come back, as it did before. I'm NOT giving up and I know this will be a hard battle, but I still HOPE to win it. The Opdivo and the Radiation has helped greatly, but as I've known since my original diagnosis (almost a full year now 3/27/16), having Stage IV cancer that has spread (to my brain), is pretty bad....!
I'm a bit down, but I think in my heart, I already knew this and was a bit too excited about the tumor being gone again. I guess I had hoped the Opdivo may be the miracle I needed, and while it may be, right now it is not been proven as a cure for late stage lung cancer. Even so, it will continue to boost my immune system to be able to better fight the cancer cells. If this does not work, there are still more options, including other types of Chemo and more radiation, (which I would hate), but never say never! For now I'm stable...and in the cancer world that's actually a good thing--so I'll continue to take one day at a time....and continue to HOPE for my cure.
And for anyone who may be wondering about the costs....it's crazy high and this year with Hubby's health insurance, we have a $3,000 deductible and then have to also pay 10% co-insurance until we had paid another $7,200 out of pocket. It's crazy and no wonder we are feeling broke and can no longer save a dime. We did start another HSA Account, which comes directly from his Paycheck at $120 per Pay period (by monthly) not to mention the costs we pay toward our health insurance and an FSA account we have for vision and dental. And my husband is now sixty years old and works close to 60 hours every week...this is awful and I hate it. It's so unfair and although I get a monthly payment from Social Security Disability, it's peanuts and this year, there was no increase? Not for me or any one else who is collection Social Security, which is crazy, since we all know it costs more and more to live every year, and that's for healthy people with no medical costs. UGH!!
The cost of each Opdivo treatment is billed to our Aenta Insurance at about $35,000.00 each. This is just ONE of my treatment bills submitted to Aetna -- "Service Date: 02/26/16 LISA (You) ADDISON GILBERT HOSPITAL - $37,286.60" It makes me sick --WHAT if I did not have insurance and they do not cover it all. I have to pay $ 644.03 o that bill (deductible and co-pays)...and that's just ONE of many!! This is another one -- Date of Service: 02/01/16 LISA (You) ADDISON GILBERT HOSPITAL $38,112.22 and for this one, I have to pay $ 666.04 -- Not to mention that I already paid almost $3K in bills that all went to the deductible....sucks to be sick..!! INJECTION, NIVOLUMAB (the drug name for Opdivo) -- Service provided on 02/02/2016 - Amount $36,509.55.
No wonder I feel down..not only and I friggin' dying from this disease, it's taking all our money now too! I just want to scream......right now it really sucks....!!!
Luckily, I did spend some time with Dr. Sunkara, and as I pretty much knew, I'm doing well with the cancer and currently in a form of remission, but as of now, there is still no known cure for my type and stage of lung cancer! It's still treatable and I'm still fighting, but I have to face that I may very well come back, as it did before. I'm NOT giving up and I know this will be a hard battle, but I still HOPE to win it. The Opdivo and the Radiation has helped greatly, but as I've known since my original diagnosis (almost a full year now 3/27/16), having Stage IV cancer that has spread (to my brain), is pretty bad....!
I'm a bit down, but I think in my heart, I already knew this and was a bit too excited about the tumor being gone again. I guess I had hoped the Opdivo may be the miracle I needed, and while it may be, right now it is not been proven as a cure for late stage lung cancer. Even so, it will continue to boost my immune system to be able to better fight the cancer cells. If this does not work, there are still more options, including other types of Chemo and more radiation, (which I would hate), but never say never! For now I'm stable...and in the cancer world that's actually a good thing--so I'll continue to take one day at a time....and continue to HOPE for my cure.
And for anyone who may be wondering about the costs....it's crazy high and this year with Hubby's health insurance, we have a $3,000 deductible and then have to also pay 10% co-insurance until we had paid another $7,200 out of pocket. It's crazy and no wonder we are feeling broke and can no longer save a dime. We did start another HSA Account, which comes directly from his Paycheck at $120 per Pay period (by monthly) not to mention the costs we pay toward our health insurance and an FSA account we have for vision and dental. And my husband is now sixty years old and works close to 60 hours every week...this is awful and I hate it. It's so unfair and although I get a monthly payment from Social Security Disability, it's peanuts and this year, there was no increase? Not for me or any one else who is collection Social Security, which is crazy, since we all know it costs more and more to live every year, and that's for healthy people with no medical costs. UGH!!
The cost of each Opdivo treatment is billed to our Aenta Insurance at about $35,000.00 each. This is just ONE of my treatment bills submitted to Aetna -- "Service Date: 02/26/16 LISA (You) ADDISON GILBERT HOSPITAL - $37,286.60" It makes me sick --WHAT if I did not have insurance and they do not cover it all. I have to pay $ 644.03 o that bill (deductible and co-pays)...and that's just ONE of many!! This is another one -- Date of Service: 02/01/16 LISA (You) ADDISON GILBERT HOSPITAL $38,112.22 and for this one, I have to pay $ 666.04 -- Not to mention that I already paid almost $3K in bills that all went to the deductible....sucks to be sick..!! INJECTION, NIVOLUMAB (the drug name for Opdivo) -- Service provided on 02/02/2016 - Amount $36,509.55.
No wonder I feel down..not only and I friggin' dying from this disease, it's taking all our money now too! I just want to scream......right now it really sucks....!!!
Friday, March 4, 2016
CT Results...
---are wonderful! My lung tumor is GONE!! I think I am still partially in shock, but I am SO HAPPY!
I saw Dr. O'Meara, (my Pulmonary Oncologist) today and was thrilled to learn the the CT Scan from Wednesday shows no sign on the tumor, except a tiny "blip" which they consider to be scar tissue. On top of there is also so sign of Cancer that showed in my abdominal CT Scan, WOOHOO!!
I know I probably should be screaming from the rooftops and believe me, I am thrilled, but if you have followed my journey you'll know that I had this same great news in August, when I learned that both tumors (brain and lung) were gone. I'm still super happy that my brain tumor has never re-occurred and hope it never will--but I am cautious with the lung tumor, since we know that it already came back one, and was then larger and more aggressive.
At this time we are not sure if this is a results of the "Opdivo" treatments, the Radiation, I had in November, or a combination of both. When I had my first follow up CT Scan after the Radiation, the tumor had shrunk, and that was at the very beginning of the Opdivo Treatments, so we all think that was a results of the Radiation. I also learned today that "Radiation" can continue to work for up to a full year after treatment, which is also great news.
Dr. Sunkara (my Medical) and primary Oncologist, also met with the Radiologist to review my abdomen scan to be sure there is 'nothing' there and they were happy to report there is nothing they see nor any sign of colitis....which is wonderful.
Why, I've been feeling so lousy and tired, is very like still a bit of jet lag and also likely from the treatments, which will continue. I'll be back the AGH on Tuesday for my labs and my visit with Dr. Sunkara and she does plan to continue the Opdivo Infusions with my next one scheduled for Wednesday morning!
I am SO happy, but again being cautiously optimistic. I really want to speak more with her and ask if this is consider a form of "Remission" and if it's accurate to now consider myself to be Cancer Free! It sure feels good and I'm hoping to celebrate this weekend. I am feeling better and less tired, which is also great!
Special thanks for everyone who continues to pray for me, send me happy thoughts and for all the encouragement and support you have all provided to me. I feel like this is a bit or a miracle and now hope and pray it stays gone forever!
I saw Dr. O'Meara, (my Pulmonary Oncologist) today and was thrilled to learn the the CT Scan from Wednesday shows no sign on the tumor, except a tiny "blip" which they consider to be scar tissue. On top of there is also so sign of Cancer that showed in my abdominal CT Scan, WOOHOO!!
I know I probably should be screaming from the rooftops and believe me, I am thrilled, but if you have followed my journey you'll know that I had this same great news in August, when I learned that both tumors (brain and lung) were gone. I'm still super happy that my brain tumor has never re-occurred and hope it never will--but I am cautious with the lung tumor, since we know that it already came back one, and was then larger and more aggressive.
At this time we are not sure if this is a results of the "Opdivo" treatments, the Radiation, I had in November, or a combination of both. When I had my first follow up CT Scan after the Radiation, the tumor had shrunk, and that was at the very beginning of the Opdivo Treatments, so we all think that was a results of the Radiation. I also learned today that "Radiation" can continue to work for up to a full year after treatment, which is also great news.
Dr. Sunkara (my Medical) and primary Oncologist, also met with the Radiologist to review my abdomen scan to be sure there is 'nothing' there and they were happy to report there is nothing they see nor any sign of colitis....which is wonderful.
Why, I've been feeling so lousy and tired, is very like still a bit of jet lag and also likely from the treatments, which will continue. I'll be back the AGH on Tuesday for my labs and my visit with Dr. Sunkara and she does plan to continue the Opdivo Infusions with my next one scheduled for Wednesday morning!
I am SO happy, but again being cautiously optimistic. I really want to speak more with her and ask if this is consider a form of "Remission" and if it's accurate to now consider myself to be Cancer Free! It sure feels good and I'm hoping to celebrate this weekend. I am feeling better and less tired, which is also great!
Special thanks for everyone who continues to pray for me, send me happy thoughts and for all the encouragement and support you have all provided to me. I feel like this is a bit or a miracle and now hope and pray it stays gone forever!
Thursday, March 3, 2016
The good and the bad....
Well the good news is that I had a wonderful trip to San Diego and despite lots of little issues, overall I had fun and was so happy to spend a lot of time with my Son, Brian, my friend, Pat and also met two online crafts friends, while I was there - (Barbara and LesLee). I really enjoy when I meet friends that I met online, because it's something many of us can't always do.
Now that I'm home, things Cancer wise are not so hot. I did have my 6th Opdivo Treatment last week (on Friday) and have pretty much been sick ever since. I feel basically very fatigued over the weekend and assumed that was still due to Jet Lag, but when Monday came and I had then been home a full week) I also started having some belly pains and that awful nausea again, on top fo relentless fatigue, which is not fun. I've spent much of this week sleeping or in bed, because I simply am too tired to be up and do much. I hate feeling this way and I spend almost a month feeling this crappy over the Summer and pray this is NOT happening again. When the Cancer starts to keep in in bed, day after day, it's ruins your quality of life and that sucks.
I have not felt well enough to create in days and that made me realize early this week, that I needed to step down from being on the Design Team at The Outlawz Challenges, which was really hard. I LOVE to create so much and for me, it's like a form of relaxing and therapy, so that when I lose that ability, it's gets me down...and I'm also feeling kind of down these past few days too.
Yesterday I had my scheduled CT Scans (Chest and Belly) and will have all those results when I meet with my Pulmonary Oncologist tomorrow. I also spoke with my medical Oncologist and went up to Oncology while I was at the hospital to tell them about my symptoms, something they want to monitor very closely while on the Opdivo. Luckily, my BP was fine, I was not dehydrated and I can eat some (and easily take fluids), but I dont' have huge appetite and just don't feel well. They will decide IF I can have a treatment next week, when I go back for my labs on Tuesday.
Today, is the first day that I think, (and hope) that I'm starting to feel a bit better. I don't feel quite as fatigued and my belly feels better, but I'm still really exhausted, so I'll take it easy, but did manage some house chores that I felt were too behind. I hate when my house is not nice and clean and do not like to ask Hubby to do extra...he works enough already at over 60 hours a week, so asking him to take on more is hard. If it gets too bad, I'll hire a friend to clean soon and will definitely need extra with "Spring" cleaning this year!
SO that's about it for me....nothing too bad and nothing all that wonderful. I do HOPE my CT results are okay and that the tumor is smaller for the same. My Oncologist did tell me not to be upset IF is the same, as that is a good results on this med -- and what we do not want it for it to be larger or see cancer anywhere else...? Hoping that is the case!!
Looking forward to Siring and we have had some mild days, which is great. I am VERY happy I was in San Diego, curing the coldest part of winter and that since I've been home, it's been easy to deal with. Today is one of the coldest days, but the sun in bright and that always makes it seem better!
Hugs to you all...hoping everyone is okay and hoping for Happy and Healthy Days for all!
Now that I'm home, things Cancer wise are not so hot. I did have my 6th Opdivo Treatment last week (on Friday) and have pretty much been sick ever since. I feel basically very fatigued over the weekend and assumed that was still due to Jet Lag, but when Monday came and I had then been home a full week) I also started having some belly pains and that awful nausea again, on top fo relentless fatigue, which is not fun. I've spent much of this week sleeping or in bed, because I simply am too tired to be up and do much. I hate feeling this way and I spend almost a month feeling this crappy over the Summer and pray this is NOT happening again. When the Cancer starts to keep in in bed, day after day, it's ruins your quality of life and that sucks.
I have not felt well enough to create in days and that made me realize early this week, that I needed to step down from being on the Design Team at The Outlawz Challenges, which was really hard. I LOVE to create so much and for me, it's like a form of relaxing and therapy, so that when I lose that ability, it's gets me down...and I'm also feeling kind of down these past few days too.
Yesterday I had my scheduled CT Scans (Chest and Belly) and will have all those results when I meet with my Pulmonary Oncologist tomorrow. I also spoke with my medical Oncologist and went up to Oncology while I was at the hospital to tell them about my symptoms, something they want to monitor very closely while on the Opdivo. Luckily, my BP was fine, I was not dehydrated and I can eat some (and easily take fluids), but I dont' have huge appetite and just don't feel well. They will decide IF I can have a treatment next week, when I go back for my labs on Tuesday.
Today, is the first day that I think, (and hope) that I'm starting to feel a bit better. I don't feel quite as fatigued and my belly feels better, but I'm still really exhausted, so I'll take it easy, but did manage some house chores that I felt were too behind. I hate when my house is not nice and clean and do not like to ask Hubby to do extra...he works enough already at over 60 hours a week, so asking him to take on more is hard. If it gets too bad, I'll hire a friend to clean soon and will definitely need extra with "Spring" cleaning this year!
SO that's about it for me....nothing too bad and nothing all that wonderful. I do HOPE my CT results are okay and that the tumor is smaller for the same. My Oncologist did tell me not to be upset IF is the same, as that is a good results on this med -- and what we do not want it for it to be larger or see cancer anywhere else...? Hoping that is the case!!
Looking forward to Siring and we have had some mild days, which is great. I am VERY happy I was in San Diego, curing the coldest part of winter and that since I've been home, it's been easy to deal with. Today is one of the coldest days, but the sun in bright and that always makes it seem better!
Hugs to you all...hoping everyone is okay and hoping for Happy and Healthy Days for all!
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