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!
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