Just wanted to give a quick update that I'm finally starting to see signs of recovery after months of chemo and radiation. I'm more active and taking much less pain medicine. In fact, my recent migraines were probably caused by coming off oxycodone too quickly. Now tapering more gradually and feeling better.
I'm hoping that being more active and having less stent/ bladder pain means my remaining tumor is continuing to shrink. There's not a lot of happy neuroendocrine stories here so I'm doing my best to change that
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tom67inMA
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It's been very difficult to exercise this year, but I've made an extra effort to do as much as I could on infusion days. I've seen a mouse study where mice who were forced to exercise during chemo had smaller tumors than those who didn't.
Very true, and let's not forget that xgeva is produced by genetically modified hamster ovary cells (really!). With all these rodents involved, it's it any wonder I find myself craving cheese?
I'm not sure how I endured it myself. Suffice to say there wasn't much of a choice, and tangible results do help. I do look at some of my colon cancer Facebook friends and think they've had it much tougher than me.
Wonderful news!!! Can I ask what medicine they currently have you on? My husband has Neuroendocrine PC as well with mets to bones, liver and now lungs. Please keep in touch. All the best. Stay strong.
I'm currently on atezolizumab for the neuroendocrine cancer, lupron and abiraterone for the "normal" cancer, and xgeva for the bone damage. Earlier this year I had carboplatin + etoposide chemotherapy which completely resolved my liver mets (to the extent a CT scan can see, of course).
There's details in my profile up to about January of this year, when the neuroendocrine diagnosis happened. The symptoms started about a year ago, but I didn't have a scan until the tumor in my bladder blocked my kidney. It's kind of darkly funny that I had a clear cystoscopy just a few days prior, and then in the ER they found a large tumor right where my urologist had just been looking.
In retrospect my doctors were looking for a horse to return, and instead I had a zebra.
Thanks for the reply. Just read your profile as well. You and my husband have both been through so much.
Can I ask about your chemo? On your profile page it’s saids you had Carboplatin, Etoposide and tecentriq but up above you just have the Carboplatin and etopoiside listed?
Can o ask if you had just the 2 chemos of all 3? My husband only had 2 rounds of the Carboplatin and Etoposide and it didn’t work. New scans show he has new cancer growth. I’m curious if you had tecentriq too?
This Neuroendocrine is a beast. Trying to look at other angles. 👍
I've been referring to atezolizumab/tecentriq as "immunotherapy" as opposed to "chemo". I started all three drugs at the beginning of February and continue on the atezolizumab with my next infusion tomorrow.
Sorry to hear the chemo isn't working for your husband. Two cycles should be enough to see a response, even if it's just stable disease. I think there may be some studies using two immunotherapy agents at the same time, but haven't looked into them.
It was because of the neuroendocrine diagnosis, and based on small cell lung cancer treatments. There's neuroendocrine cells in most (all?) organs. Small cell lung cancer is basically neuroendocrine lung cancer, so treatments for it should also work for neuroendocrine prostate cancer.
Just read your profile, your husband sounds very similar to me. If he's at all capable of exercise during chemo I'd recommend he does as much as he reasonably can.
I'm Hoping he gets the same results from chemo that I did!
It was noticably rougher than docetaxel. Of course, I only had 10 months between chemos so was probably still recovering when this one started. And I was on abiraterone during this chemo, and dealing with the stent and the anesthesia associated with those procedures. June (end of chemo) and July (radiation) were particularly rough. August seems to be a month of transition, so hopefully I'll see sustained recovery in September.
At my last appointment I discussed the trial where they adding Carboplatin to Cabazitaxel for the general treatment popluation of CRPCa patients.
My doctor seemed kind of surprised by that and said he would wait until he sees a phase 3 trial. He only gives Carboplatin for NEPC or homologous recombination repair mutations like BRCA.
He said it's a tough regimen and only gives it if indicated.
It is up lifting to read good news from our fellows. It makes all of us feel better and hopeful for a return to a more normal life. Bless you and your caregivers.
That's awesome, Tom!! So wonderful to hear good news - and for you, to see results after all the effort you've put in! I'm so pleased for you May it continue long long!
G'day Tom, great to hear of your success after enduring such a rough treatment regime. I wish further shrinkage of the tumor in your bladder for you, in the hope of getting that stent out soon, cheers 😎DD.
A lot of things are changing in the last few years. Glad it's a happy update for you. I also had a happy update yesterday. One day at a time. We will do this. Monte
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Things Changed Quickly...
Happy Easter ~ Update Increased Met - PSA
Rather quick failing of Firmagon 
Update 
PSA quickly rising while waiting for trial to start
