Sunday, September 25, 2016

Some Happy News to share....

I am very happy and excited to let you all know that I has the pleasure of going with Alex, (my son) and Acacia (my Daughter-in-Law) to her Ultrasound on Friday.   We have been waiting patiently for a long time for this one because we knew that it would be very likely they 
would be able to find out if the baby is a Boy or Girl!!

And I'm delighted to tell you all that they are expecting a 
Sweet, Adorable, Healthy and Active - Baby GIRL!!

  As a Mom who has raised two son (who I LOVE with all my heart), and having lost my only daughter as a stillborn, I had been hoping that we would be adding a baby girl into our lives.   Ultimately, all we really wanted was a Healthy Baby, but I admit I am "Tickled Pink" to know that it's going to be a Baby Girl.

   Today, I had my first "Baby Girl" online shopping spree and it was so much fun.   I found so many adorable outfits and now can hardly wait for this sweet baby to be born.    Acacia is halfway through her Pregnancy now and is due on February 18th.   Both she and Alex have birthday's on the the 16th of the month and were also married on the 16th, so we think it would be extra special if this baby arrived on the 16th too!!

    I am thrilled that I'm finally going to have my very first Grandchild, and will continue to fight my cancer battle and be here to love and cherish her for a long time.  



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!


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!!  


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.

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.....!!