FOLFIRINOX chemo and blood blisters in mouth

Posted by lbern @lbern, Feb 14, 2019

I am receiving folfirinox chemo and developing clumps of blood blisters in my mouth. Some weeks I get large ones, other times they are tiny. They engorge with blood, pop, then remain as a mass of necrotic tissue. I am on blood thinners so doctors are reluctant to excise the mass. I am wondering if anyone has experienced blood blisters in mouth, and what possible triggers might be. I have a theory the big ones develop after I eat an acidic food, but don’t know if there’s any truth behind that. Also wondering how you treated them, I am treated with chlorhexidine 0.12 % mouth/throat solution, but the mass of tissue remains in my mouth. There also is some discussion on if it’s getting infected or not-I have redness on skin outside of cheek on side that has the necrotic blisters , swelling, and warmth.
Any ideas on how I can prevent them/ treat them are much appreciated. (I do not bite my cheek or eat pointy hard food) -thanks

@lbern So sorry for this never heard of blood blisters in mouth but have you talked to your Dr. pcp and oncology Dr. about this ? what do they say There is a mouth wash Ive heard of to heal and cleanse the mouth but don't know the name of it To me and I'm not a Dr. but sounds like the medicine is to strong .Talk to your Dr. and pharmacist maybe they can help with mouthwash of course check with Dr about it .

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thank you for response. the doctors think it's chemo related, but don't know how to stop them or why sometimes i get them and other times i don't. New ones form each day.

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Hi @lbern, You'll notice that I moved your message to the cancer group. Are you getting FOLFIRINOX chemo for bowel or pancreatic cancer?

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I'm getting folfirinox for Pancreatic cancer metastasized to liver: Thank you for moving the post

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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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@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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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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Hello @lbern

While I have not had this particular type of cancer, I have had recurring neuroendocrine tumors (NETs), which is a rare form of cancer. To date, I've had three surgeries.

I'm inclined to agree with Lisa, @lisalucier, that you would do well to seek out a second opinion in this matter. The mouth sores sound very uncomfortable. Do they affect your ability to eat? If so, this is affecting your quality of life as well.

Recurring or metastasizing cancers are difficult both physically and emotionally. How are you doing with these challenges? Do you have a good support group in place with family, friends and other community resources (like a place of worship or community activity group)?

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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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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.

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@hopeful33250

Hello @lbern

While I have not had this particular type of cancer, I have had recurring neuroendocrine tumors (NETs), which is a rare form of cancer. To date, I've had three surgeries.

I'm inclined to agree with Lisa, @lisalucier, that you would do well to seek out a second opinion in this matter. The mouth sores sound very uncomfortable. Do they affect your ability to eat? If so, this is affecting your quality of life as well.

Recurring or metastasizing cancers are difficult both physically and emotionally. How are you doing with these challenges? Do you have a good support group in place with family, friends and other community resources (like a place of worship or community activity group)?

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thank you for response. The eating has been difficult, especially since I was trying to avoid some foods that I thought were irritating the blood blisters. I have some awesome former co-workers , family, and friends who have been supportive, which warms my heart. I am so thankful for this discussion board because regardless of how sympathetic my network is, they are not going through what I am and it's helpful to get your responses.and perspectives.

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I really hope that @nogginquest and @edder will join this discussion as they both have experience with FOLFIRINOX and pancreatic cancer. You can read more in this discussion:

> Pancreatic Cancer Stage IV and in partial remission https://connect.mayoclinic.org/discussion/pancreatic-cancer-stage-iv-and-in-partial-remission/

@lbern, I would encourage you to ask for another pancreatic oncologist if you're not comfortable with the one you were seeing. It is your health and your team. You ask about how often people get follow-up scans to see how treatment is working. That probably differs from person to person since the type and frequency of treatment will be different for each person. How often do you have scans at the moment? How often do you get chemo?

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I get chemo every other week. I started Nov 13 and haven't missed one. I had a CT scan on Jan 4 which had some indefinite result so had an MRI on Jan 18. I've had one tumor marker blood test 2 weeks ago to compare to one from approx Nov 7. I need a special tumor marker test that they send to Mayo for analysis since my tumor marker is too high for our clinic's test to analyze. I wonder if my chemo stops working, how long it would take to know it and switch to another regime…..

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