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Clinical trial link

Wolverine19 profile image
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Here is the link to the clinical trial I am thinking about doing. I would love to hear people's thoughts on this. When you do this trial if you were eligible for it?

smartpatients.com/trials/NC...

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Wolverine19 profile image
Wolverine19
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MacroMom profile image
MacroMom

Our paths have been similar....I was diagnosed denovo in Oct 2017 with lots of bone mets and some liver mets, ER +, HER-2 negative. Had a good run on Letrozole, no luck on Faslodex/Ibrance, 7 easy months on Xeloda, and am now on Paclitaxel (Abraxane)...very similar to Taxol but albumin-based so no solvents needed. It's working very well alone, I get an IV every other week and it's dropping the cancer markers and kicking back the liver mets. And I've honestly been feeling great, even though with no hair I actually look more like a cancer patient than I did when my markers were higher. Quality of life is important to me and I tend to make treatment choices with that in mind, over potential survival time. It's a hard choice that we all navigate differently.

I have not done a clinical trial. I looked over the scheduling of Bracelet. Of course you don't know what arm of it you will end up in, but if you get all three medicines it looks like you could be getting IV's on days 1,2,3,8,9,15,16 and 17 of a 28 cycle. If you get two medicines it is all of those except days 3 and 17. I assume that means commuting somewhere to get them, with compromised immunity. Can you do that safely? Is it an easy commute? Do you have good home support if you need it?

I think this has come up in your previous posts, but I'd be somewhat concerned about this clinical trial being so new and only being at stage 2. I wasn't able to find any reports on the results of stage 1, perhaps you have seen those? I tend to err on the side of single treatments that have been around a long time over newer ones, but that is my personal bias. And if patients hadn't been willing to do clinical trials of Taxol and Abraxane years ago, I might not be enjoying the benefits now.

Is doing Taxol or Abraxane alone an option? I know that would disqualify you for this trial in the future, but they are proven meds that would mean a lot less commuting. Has the doctor offered any other treatment options?

Most importantly, do you feel like you have all the information you need to make an informed decision? Here's a link from cancer.net on questions to ask about clinical trials, maybe it will be helpful:

cancer.net/research-and-adv...

This is just my two cents worth. You are the best judge of your situation, your condition, and what is right for you.

Wishing you all the best!

Patty

Bubbles001 profile image
Bubbles001

Looks interesting. Research around PD-1 seems to be promising. It’s a phase 2 trial, which is a good thing, meaning they have the dose adjusted properly. I was in a phase 2 trial w immunotherapy and really appreciated the extra care and attention I received and free services. I did have to be scanned every 6 weeks and I’m allergic to scan dye, so that was the only drawback. I would participate in this trial, if eligible. Best of luck to you!

hdhonda profile image
hdhonda

Hi Wolverine, I just don;t know what I would do. I read about the trial, but didn't understand everything. I would probably take my doctor's advice. I am sorry that I am no help but I wish you the best with your decision. Blessings, Hannah

NPmary profile image
NPmary

My answer would depend on what is the current standard of care currently for someone in my situation - what can I expect in the best and worse of outcomes in the standard? What is the outcome people have using just the chemo that is in the trial. So after I looked at all possibilities and what I might gain in benefit and lose in side effects them O would make my decision.

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