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lbern (@lbern)

FOLFIRINOX chemo and blood blisters in mouth

Cancer | Last Active: Feb 20, 2019 | Replies (11)

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@lbern

This is a follow-up from my earlier post wondering if anyone has heard of blood blisters in mouth due to folfirinox.. Since my last treatment resulted in the worse case of blood blisters so far, multiples forming daily for a week and haven't stopped forming, I have an additional question: how to think or deal with the anxiety of health care team "not knowing", but proceeding anyways with treatment.
In my case my mouth capillaries are rupturing under mouth mucosa, causing blood blisters. Since my team has never heard of this and is unfamiliar with how it happens or progression, I then wonder if they are unable to tell me risks of continued treatment, such as if I'll have more rupturing of capillaries in other parts of my body, like my brain. I imagined oncologists had resources to reach out to other oncologists to get answers to questions they don't know, but wonder if my oncologist is doing that, or if this just doesn't rise to the level of concern. Just saw his assistant yesterday, who had no answers & said I could talk to Dr. on my treatment day. How do other people deal with anxiety over treatment and doctors seeming to "not know" to guide us?

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Replies to "This is a follow-up from my earlier post wondering if anyone has heard of blood blisters..."

Hello, @lbern – just wanted to let you know that I moved your message with your update about the blood blisters in mouth due to folfirinox to this discussion you started previously. I can imagine that would feel concerning with the unknowns related to these blisters.

I would like to invite some members, like @hopeful33250 @travelgirl @alpaca @ginpene05 @nogginquest @beachgirl23, who have been treated by oncologists/hematologists and may have some perspective on your question about how to think or deal with the anxiety of a healthcare team "not knowing," but proceeding anyways with treatment. @lioness, who has been part of this discussion, may also have some thoughts for you.

@lbern, would it be a possibility for you in your region and with what is allowed with any insurance coverage you have, to get a second opinion on the blood blisters and potential progression? Are you feeling like your anxiety right now over this is manageable, or getting in the way of your daily functioning?