Nivolumab triple negative

Anonymous

Nivolumab triple negative

Sunflower74

Hi all just been diagnosed triple negative and been told plan chemo then surgery. I’ve been offered to take Nivolumab as part of trial with chemo but that means traveling 3.5 hours to get it once a week 12 weeks. Anyone taken it? Is it worth the 7 hours drive for the drug? I’m in 2 minds about potential benefit and the disruption to family life.

moth

Hi Sunflower, I'm so sorry to hear of your diagnosis.

it really is impossible to say if it's worth it - I mean if we knew that it worked for sure, it would be standard of care. Participating in a clinical trial gives you an opportunity for everyone to find out if it is helpful to triple negative patients or not.

What is the chemo that is your team proposing? Is it AC+T (adriamycin, cyclophosphomide & taxol)

Will you be allowed to take low dose capecitabine after you finish standard chemo/surgery (& rads if required) if you participate in this trial? If not, then I'd be wary because that is an evidence based intervention now.

I think the thing about triple negative is that it is the subtype with the worst outcomes and the highest recurrence rates. If there is a potential benefit, then 12 weeks disruption for me would be a small price to pay but it all depends on your family circumstances and support too.

And participating in clinical trials is a highly personal decision. It might provide a personal benefit (or not) and it also blazes the path for women who come after you but you need to be comfortable with what is involved and how it might affect your treatment. I've signed up for 2 trials - dropped out of 1 right after being randomized to an arm I didn't want to be in. Remember you're in control. You get to make decisions.

best wishes

Sunflower74

Think the plan is weekly paclitaxel and 4 weekly carboplatin.

I will ask them about capecetabine.

I’m due to go for preliminary tests etc today and I started reading some of the side effects which are horrendous. Seems when it works it works but then others have indicated pretty significant side effects (renal failure, damage to the brain).

I feel sick just thinking about it.

Moderators

Hi Sunflower and welcome to Breastcancer.org,

We're so very sorry to hear of your diagnosis, but we're really glad you've found us. As you can already see, our Community is full of very helpful members always willing to offer advice, information, encouragement, and support -- we're all here for you!

You may want to check out the Are You (or Have You Been) In a Clinical Trial? thread where you may find others enrolled in this trial. In addition, you may find some helpful info in the Triple-Negative Breast Cancer forum, as well as the Triple-Negative Breast Cancer page on the main Breastcancer.org site.

We hope you find help and insight here. Please let us know if there's anything we can do to help. Welcome again!

--The Mods