Had my scan yesterday to see how well cabazitaxel is working to clean up my neuroendocrine cancer, and if anything, it's been fertilizing it. My liver looked awful. Cabazitaxel isn't normally known for fighting neuroendocrine cancer, but when it was recommended by the best NEPCa doctor in the country, it's worth a shot.
In the strange world I live in, this is good news. Having a large amount of cancer in a vital organ is bad news, but not knowing about it is worse. I had little motivation to exercise. I was going to bed at 8pm and sleeping at least 10 hours a night. Losing interest in food. My evening chocolate made me feel sick. These were all signs that something was drastically wrong, but in theory the chemo was working so I must just be a wimp. I cried regularly for all the things I wasn't doing, and couldn't explain why they were suddenly beyond my abilities.
But now that gut feeling that something was very wrong has been vindicated. There's every reason for me to feel exhausted, in pain, and lacking in appetite. I can sleep as much as needed, take sufficient pain meds to control my pain, and eat frequent small meals without feeling like a wimp. Just a moment of looking at my liver on my oncologist's screen changed me from wimp back to being a warrior.
My oncologist assures me there are options. Better options than cabazitaxel for fighting neuroendocrine cancer. But he wants input from Dana Farber. He told stories of his days as a researcher, where he would only see patients two days a week, and spend the rest of his time immersed in studying cancer.
So I'm off to see Dr. Beltran at Dana Farber today. I'm not sure if she has a sense of humor or not, but I would love to tell her "I want to continue singing your praises online, but you have to keep me alive for me to do that".
My fight is not over yet, but wow, if you want to talk setbacks, having hemoglobin and platelets decimated by chemo while the cancer grows unchecked is a good one. A non-chemo treatment that successfully reduces the neuroendocrine tumors would suit me very well right now.
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tom67inMA
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There's something to be said for intuition. On to better options and feeling like yourself again. Enjoy that first run I know I would. I will think of you when eating my dark chocolate tonight.
We have a 13.1 to run on the 4th of July. Time to get ready.
Give her a 6 feet hug from us. She is still our hero.(I've tried to crack jokes..not sure about that.) She loved the pictures I send her of G and his dog. She is the humbles,kindest and smartest researcher I know. We would feel hopeless if not for her. Love you,Tom.
Apparently not, yet still Dr. Beltran was surprised by my non-response. Perhaps she's human after all? Anyhow, onto Folfiri for me. There might be a couple clinical trial options for me come springtime. I'll have to ask her to send me a link to information about them, because such things don't stick in my head during these meetings.
I would believe it does work for some cancers. Somebody else commented here that carboplatin+etoposide didn't work for her husband, which I've heard has an 80% response rate.
That may have been me. Mike started with carbo+etop+tecentriq, cancer progressed. After consult with Beltran we went to cabazitaxel and carbo, cancer progressed.
Looking at your profile, it looks like carbo+etop+tecentriq may have originally worked for Mike (or did it just stabilize him for that time?), but the cancer came right back after going to tecentriq only. I was referring to a case where the original chemo didn't have any effect whatsoever. For whatever it's worth, later genetic testing showed that tecentriq was unlikely to work for me, so no surprise that it didn't.
I heard through the grapevine that unfortunately Mike has passed. If so, allow me to offer my condolences, and apologies if this is a painful topic to bring up in a reply. Your presence here is still very useful to people like me, so thanks.
I've heard other stories (including Mike's) of how fast cancer can grow when it comes back, and how much of a hole you can end up in if chemotherapy doesn't work. I'm now living that nightmare first hand, and it's impossible to imagine how bad it is unless you've experienced it or had a close loved one go through it. I'm hoping my new (to me) chemo will set me up to join one of a couple trials that will be opening up this spring.
Thank you for clarifying. What you were describing sounded familiar which is why I chimed in. Never any overall improvement but some stability (some tumors responded slightly, others unchanged). Mike was ready to start a clinical trial with opdivo and yervoy (CheckMate trial). While we were there, completing bloodwork and scans, they discovered another infection which went septic. He passed away in July. Our last ditch effort, if there was no success from the trial, was going to be the parp inhibitor Lynparza. Mike had the BRCA2 gene mutation. There were no guarantees, he fought like hell! I know you have been through so much with a very similar profile as Mike. Praying for you and all the men in this forum. 🙏🏼💙
Oh my! That's simply a tragic way to go when you both must have had some hopes for the trial. I don't know if I have the same level of fight that Mike did, only that I've done more things medically speaking that I ever imagined. Thank you both for at least trying to partake in the trial, that can directly help many of us here.
I saw Tall Allens comment months ago about carboplatin combined with cabazitaxel and did it (along with the onpro neulasta patch for white cell boost). I got a wonderful response. There was suspension of neuroendocrine progression to spine, but surgery and biopsy found the masses in center of spine non-cancerous. In any case, the 2 drugs combined worked great for me. A little rough on nausea side effects.
We talked about adding carboplatin, but since I had been on it only a few months prior it was thought too soon to tru again. It worked great, but the results didn't last. Unless the intended result was fatigue and rubbish aerobic capacitty, that had lasted and been enhanced by ongoing treatments.
... and the answer is folfiri, as suggested by my regular oncologist. My genetic testing was uninteresting from a treatment standpoint. There aren't any great trial matches for me right now, but a few are upcoming by spring. I'll have to ask for more details about the studies, just so hard to keep everything straight during the appointment.
Tom, I know you and I have message before. My husband also has Neuroendocrine and it has spread to the liver and lungs.
Carboplatin and Etoposide did not work and like you had mentioned seemed to “fertilize” the beast.
We are seeing Dr Paul Mathew at Tufts up in Boston. Maybe he and Dr Beltran can speak and “compare” or collaborate on both you and my husbands case. John White in this group also sees Dr Mathew and has Neuroendocrine PC.
My husband just started Opdivo after being on a med for the liver tumors.
Just a thought....but I believe research, great Drs. and the will to fight is what is needed to live with this beast.
God Bless and stay positive and strong. Know that others care and are here to try to help.
Yes, I remember you recommending Dr. Paul Mathews and thank you for mentioning him to me. Right now I'm grappling with the question of how much to "fight" the disease. A trip into Boston for a second opinion is exhausting. Do I want to use that precious energy getting another opinion? Or to spend a day relaxing at home.
Opdivo wouldn't be a good option for me. I've already failed a similar drug, Atezolizumab, and my genetic testing shows I don't have enough mutational load for much success with PD-L1 therapy.
My goal with treatment at this point is to live the best possible life, not to simply live as long as possible.
Hi, Tom. Can you do telehealth with Paul Matthew after you send your info? We met with him way back since I came across his name in an article about high Gleason, low PSA. He was wonderful, but Tufts wasn't really on our radar since our local hospital in Western MA is under Mass General. Just passing it on.
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