← Return to FOLFIRINOX chemo and blood blisters in mouth

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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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@lisalucier

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?

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Replies to "Hello, @lbern - just wanted to let you know that I moved your message with your..."

thank you for reply. I had a second opinion a couple weeks ago with a pancreatic oncologist (mine is a general) that is within the same group of oncologists. This was before the mouth blood blisters became an issue. The second opinion doctor had thought in general I was getting too much dosage of the folfirinox, which I told my oncologist, who I think will be lowering my dosage. I've thought of switching to the pancreatic oncologist, but didn't feel comfortable with her. I actually would like to meet another pancreatic oncologist who is also in the same group as my oncologist, but fear it would appear like I'm doctor shopping, which I guess would be the case….not sure why I worry about this when it's my life, but it's hard to know who's right. I think I'm OK with my daily functioning, but know I'll be worrying after next treatment, waiting to see what side effects I'll get. Also wondering how often other people get a scan to evaluate if treatment is working or not.