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.....!!

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!  

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".....! 

Goodbye, My Brother
by Lisa

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