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!!
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