Wow, I just realized it has been quite a while since my last update. Part of that is because it was a rough few months, but also, part of it is due to me writing for LungCancer.net. My apologies to those of you who follow my progress via my blog.
Let's start with my Lung Cancer. I still have scans every 3 months and thus far my Opdivo is working fantastic. Each scan shows either NO growth or slight shrinkage of my tumors. This is great news.
Now the not so great news. As I posted a while back, they discovered that I have Bladder Cancer as well. It is NOT metastatic. It is a separate cancer. In July, I had Bladder Surgery and the tumor was removed. The plan was for me to get six immunotherapy treatments which would be placed in my bladder via a catheter. I then I had keep it in there for 2 hours.
Well, as you know, my Opdivo is an immunotherapy. When my Oncologist found out, she freaked. She immediately called the Urologist to discuss what was going on. The final decision was that I was to stop the Bladder Cancer therapy because as we know there have been years upon years of studies on immunotherapies BUT NONE for people who are having 2 different immunotherapies at the same time.
Okay, so now what? Apparently there is a different chemotherapy/immunotherapy drug called Mytomycin that they decided would be a better choice. I began these treatments in August. The first two or three weren't too bad. A bit of pain for a day or two and trouble urinating.
Then the bottom fell out. On my fourth treatment, I was in extreme pain in my bladder. It was spasming. I felt a constant urge to pee!! And I mean constant. Then I broke out in hives from my neck to my toes. Between the pain and itching, I didn't know where to begin. This lasted 9 days. Of course, I called the Urologist and just my luck he was on vacation. The nurse did reach him and he said that I should stop my treatments immediately (just the bladder) and we would wait until my next scans in October to discuss what to do.
The probability of Bladder Cancer tumors coming back is high - even with treatment after removal. So I'm not sure where this leads me. Since these two drugs are the only options for me right now, we have to wait and see. At least both doctors are in agreement that my Lung Cancer is the priority.
I will update again soon, I promise. As soon as I know what is going on. In the meantime, I will just continue my Opdivo every two weeks.
It must be very hard to deal with two different diagnosis' and I don't know how you can manage it. But I have to tell you, I do love your upbeat optimism. I hope you don't mind if I borrow a little bit.
ReplyDeleteThat is a lot to have on your plate at one time -- heck, just one of those is a lot, certainly more than enough... Wishing you well in juggling all of this without being overly stressed, and hoping that the therapies work as they are supposed to.
ReplyDeleteFour years after his lung cancer diagnosis, Jim developed another primary cancer in the prostate. Unlike you, he was not in treatment for LC at that time which did make it simpler. Still the psychological blow of dealing with another cancer (surgery) is overwhelmed,ing. Praying that you can get all of this straightened out and onto a drug regimen that will work for both cancers simultaneously.
ReplyDeleteJennifer, thank you for sharing your journey. My thoughts and prayers are with you.
ReplyDeleteJanet
Oh Jennifer, I am terribly sorry for your newest dx, and all the nasty side effects you have experienced. Apparently the Doc was "out to lunch" mentally...as happens from time-to-time. It is just another reason for us to be fully involved in our treatment... Even when they are correct, sometimes something goes astray, they are human, they make mistakes. Like you, I am dealing with two Cancers now... my Lung Cancer has been active or in treatment for 3 of the past 4 years...this year I have bone mets and recently SBRT to my hip/pelvis and my T5 vertebrae that didn't seem to do the trick; had my hip replaced the old fashioned (big cut) way so the Orthopedic Oncologist could get a good "inside" look and hopefully remove the Cancer and put some cement/plastic stuff to rebuild as needed along with my new metal friend! Still trying to get over that, it's been a big challenge due to several set backs, but I'm on the road to recovery, Hip Hip Haray! BTW, in 2009 and 2010 I had CIU (Chronic Idiopathic Urticaria (Hives) for a whole year. It was a year of scratching with wire brushes, sharp kitchen utensils, and taking a zillion drugs that did not work (that's the idiopathic part - no one knows, no one can cure) - for me that was one of the most difficult times, the drugs made me sleep or get sick, yet I itched 24/7/365, I couldn't get away from it, it drive me almost crazy... I had surgery in 2010 and when I woke up - presto - the hives were gone!!! Went away just as they arrived - totally mysteriously. You have never known a person who could understand what you went through with those, on top of your Cancer... Sometimes it just sucks! I pray for my LC friends and always include you! G-d Bless! Keep forging ahead - your attitude is, as you know, a huge, important part of your life!
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