I am on my 7th line of treatment and it isn't working. I want to get into a clinical trial. One is ongoing that I wish I could get into, but it is not being tested at any hospitals near me (I am in NYC). That is a Phase 1 trial. Will they go to different med centers for Phase 2?
There is another one that might start in the fall. No idea where.
I am wondering if there are any strategies to improve one's chances of getting into a trial. (My oncologist used to be interested in getting me into trials, but her interest seems to have flagged. Hmm.)
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TammyCross
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Wish I could help, but no experience with trials. Are you in a center that does many trials?
Are you considering other drugs in the meantime? Did you see this:
The FDA approved "Dato-DXd" (datopotamab deruxtecan) for the treatment of unresectable or metastatic, hormone receptor-positive (HR+), HER2-negative breast cancer (MBC) in adults who have received prior endocrine therapy and chemotherapy, based on data from the TROPION-Breast01 trial; essentially, Dato-DXd is now approved for MBC in this specific patient population.
Oh, thanks for that. The final results show that it did not improve overall survival compared to standard treatment chemo. I guess Enhertu, next on my list, would be better, but both of them can cause hair loss, nausea, etc. It seems the ADC's do?
I am at a center that does research, but nothing for me. I go to MSK for 2nd opinions. My primary onc. thought they might have trials for me, but not so far. I want to check again, but I have to go through a whole rigamarole of getting my tests sent over, very messed up process at my primary hospital, and make an appointment. I can't just ask. I am going to call other cancer centers in the area and see if I can get on a list or something.
Thanks. Wrote you back, and then my computer froze. I wrote about DF and clinical trials, and when my computer was down, called the nearby hospital affiliated with Dana Farber. Trying to get on a list for future trials. Not sure that will work, and I might have to become a patient there, but it is a start.
Yes, I guess the ADCs are hit and miss, in terms of side effects. That is true of all the meds, to some extent, but I gather the issue with ADCs is that they are a delivery system for chemo, really -- but unfortunately the chemo can leak to the neighboring healthy cells, with the attendant side effects.
I’m on Exemestane and I shed hair like all my pets put together.
I took Afinitor at one point and I was warned before starting that many trials expressly exclude patients who have taken Afinitor. I checked a couple of times and the oncologist was right. I haven’t needed a trial but my current oncologist suggested I could look at it as an option when I need a treatment change. I was also told that one of the advantages of going on a trial is that you get a lot more management so more frequent scans etc. And in Australia it’s one of the rare occasions you’ll get a genome test of your tumour. I was offered a pik3a trial but it meant a six to eight week wait while a sample was sent to America to be tested for mutations. I decided not to do it which I regret a little because I know the barest minimum about my particular form of breast cancer.
A friend went into a trial for HER+ MBC and testing found her tumour had changed to ER+. They put her on a different trial though. She had to travel 7 hours each way to attend the clinic once a month. She and her husband would make it a two day trip. Unfortunately nothing worked and then she had trouble getting transferred back to the original country hospital she had attended.
Trials have been very good for some people and there’s no reason why a trial couldn’t be good for you too. You just have to find one and then meet the criteria and get accepted! Simple. On the upside you have so many options in America.
That is a shame you cannot get genomic testing. It hasn't made a huge difference for me - my mutations don't match any known treatment -- but then I developed the ESR1 mutation. I guess that didn't make a difference, either, because I had already gone on all the AI + targeted pairs. It just explained whey they stopped working, retrospectively. Somehow, though, it gives one more confidence.
They must at least tell you the tumor type when you are originally diagnosed?
I also have the ESR1 mutation. I am on my fourth line of treatment in 12 months, which worries me greatly. After four cycles on XELODA my tumor markers went down drastically, but my PET scan Should several new various places. I do not have any other area. I start Taxol today, and will be having a biopsy next week to see what’s changed (couldn’t get in any earlier)
Oooh, that is strange, tumor markers down but PET showed progression. I stayed on Xeloda way too long. The radiologist called it progression because I got two new tumors. The oncologist did not, because the new ones were small and one old one resolved, others were stable. Before I started taking meds that didn't work, my progression was just one tumor on my paratrachea that would come and go. The most progression I had for 4-5 years was two tiny tumors on the right side of my upper chest.
After being on AI + targeted treatments and Xeloda for a year or more when none of them worked, I have 12 tumors, some in lymph nodes. They are around my left lung (original cancer was in my left breast) - mediastinem, hilar, arch between lung and heart, others in that area, plus one axilary (left arm pit) and one bone met, L3. I have had that on and off, was resolved, but now it just grows.
It is scary. And now you are going to real chemo (infusion, not pill). Let me know how it goes. What are the other characteristics of your mbc? Mine is ER+, HER2 low, and PR 0 (was low and has gone to 0, which they consider negative; not good).
I wish they could explain why treatments work for some and not others. I have been told that the reason treatments don't work for me is that the cancer "outsmarts" the treatment. Another doc, not an oncologist, said that is not the right description. He said we have mutations all the time, everyone does, and one comes along that is resistant to the treatment and that one thrives. So do I have more mutations? How is that related to why I got mbc in the first place?
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