Hi, for my dad, I believe he was initially told he would be doing 3-4 cycles because they said many can’t tolerate past that. His scans after those first few cycles showed a big reduction in his liver tumors..plus, he had tolerated it well so they increased it to 6 cycles. My dad is young and has always been very active and healthy so I think that helped. However, those last few cycles really beat him up and didn’t decrease his tumors much more. Hope this helps!
1. I am aware of a number of Phase 1/2 trials in the NEPC/SCCP space, which has been an underserved segment for many years, but there is a growing awareness that more needs to be done. I am preparing a package of what look like the most promising trials.
2. What is my treatment plan for chemo? Specifically how many cycles are planned?
I am aware that BC cancer protocols stipulate 3 cycles for palliative and 4 cycles for curative.
I am also aware that in US clinics upto 6 cycles have been given.
I am not prepared to accept a treatment plan of 3 cycles and then off to hospice.
I am interested in pursuing a strategy of 4-6 cycles and then follow with 1 or more clinical trials.
I think that for #2 you have to take it as it comes and decide along the way based on your response and side effects. Hopefully that will be your MO's plan as well, assess whether or not to continue based on how you are handling it and what impact it is having.
My experience with them is I need to push them to get them to get them off their default position, which is this case is probably 3 cycles. By trying to push them out to 6 cycles hopefully I can land on what you are recommending.
Since you say you are stuck with your MO, then you might take a softer approach of saying "I'm assuming that we will do the number of cycles needed to suppress my disease as long as I can handle the side effects." I did 6 cycles of carboplatin+docetaxel (I have NE differentiation) and I was happy to stop there.
Things are working out. I've got a new Consultant on my case and here is his response to my letter above:
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I think the way to go is still to start off with platinum chemotherapy. This can be with either carboplatin/etoposide, or carboplatin/docetaxel or carboplatin/cabazitaxel - the exact regimen we can decide after I've reviewed the biopsy.
As for how many cycles, I think we gauge that based on tumour response. I generally aim to give 4-6, and will look to do a repeat CT scan after 3 cycles. If the cancer is shrinking considerably then, that provides rationale to push to 4-6. If the response has been modest or the tumour is growing, pushing to 4-6 doesn't make sense, and we should think about other treatment options.
Let me know when you want me to take a look at the trial package you are putting together. I was recently down in San Francisco and was listening to Dr Himisha Beltran, who is a leader in the field of NEPC.
She was presenting some data about targeting DLL3 which may be of interest to you
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This is finally starting to look like proper cancer treatment planning and care. I'm actually having a 2-way conversation with a doctor for the 1st time in a year.
You moved to the front of the line. I'm happy to hear you're getting the attention. There was a January meeting in San Francisco for medical oncologist. So you're getting the latest info from the researchers.
I'm really happy to have Ed back on my case. He is an outstanding young doctor and researcher from Australia doing a stint in vancouver. He started on my case at the beginning but then got reassigned. I trust him implicitly.
This is good news, and is the "figure it out as you go" approach that can adapt to what happens in treatment. If carboplatin does as well as cisplatin for your liver mets, carboplatin is much less toxic. Adding etoposide is more typical for small/NE cell tumors, docetaxel and cabazitaxel more target the PCa side.
I mentioned that I was hoping to do something with DLL3, but my biopsy doesn't show the cancer exhibiting DLL3. I'm sure that you have seen that there are radioligands and also immunotherapy (HPN-328 BiTE) options in trials.
I completed 6 cycles a year ago. Just finished round 1 of my second go with chemo after recent reoccurrence. Tolerated pretty well the first time last year. Not sure what this second round holds for me. My experience, bad hangover without the party 48 hrs or so after treatment.
I did one round of both chemos every 3 weeks, Carboplatin and Cabazataxil.
Yes, I completed 18 treatments in the Champ study. The chemo ended after 6 rounds due to remission and I remained on the immunotherapy until reoccurrence on scans.
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Hoping for some reassurance and insight
