Mucositis

Posted by srm @srm, Sep 6 6:29pm

Does anyone have experience with mucositis?
I’m over 8 weeks post radiation and anything I can find on this states it should be cleared up by 4 to 8 weeks. I maintain very good oral hygiene but the sores in my mouth and throat are multiplying and getting worse. It is the main reason I’m still on a liquid diet and losing more weight. Appreciate any info as it is getting frustrating when apparently it should be gone by now.

My heart goes out to you @srm for having to deal with the pain and agony of mucositis and your cancer which prompted the radiation therapy. I had a horrible bout with mucositis myself and it was one of the worst experiences of my life. It was a side effect of the extreme chemo I went through during my transplant experience. I was in the hospital for over a week on a fentanyl pump! You’re enduring this at home? For anyone not familiar it’s like having a million canker sores in the mouth and throat making it impossible to eat or drink anything!

Have you reported this to your oncologist? If it’s continuing to progress this long after treatment you need to be evaluated. There are also pain medications and oral rinses which can help heal the oral mucosa and give you some relief!
When is the last time you’ve had a blood test? If your white blood count is down in the neutropenic level, the mucositis will be difficult to heal on it’s own.

I found this link from the Oral Cancer Foundation with information about mucositis that might help give you a starting point for a discussion with your oncologist on getting this resolved.
https://oralcancerfoundation.org/complications/mucositis/
What have you tried for oral mouth-rinses to reduce the pain?

REPLY
@loribmt

My heart goes out to you @srm for having to deal with the pain and agony of mucositis and your cancer which prompted the radiation therapy. I had a horrible bout with mucositis myself and it was one of the worst experiences of my life. It was a side effect of the extreme chemo I went through during my transplant experience. I was in the hospital for over a week on a fentanyl pump! You’re enduring this at home? For anyone not familiar it’s like having a million canker sores in the mouth and throat making it impossible to eat or drink anything!

Have you reported this to your oncologist? If it’s continuing to progress this long after treatment you need to be evaluated. There are also pain medications and oral rinses which can help heal the oral mucosa and give you some relief!
When is the last time you’ve had a blood test? If your white blood count is down in the neutropenic level, the mucositis will be difficult to heal on it’s own.

I found this link from the Oral Cancer Foundation with information about mucositis that might help give you a starting point for a discussion with your oncologist on getting this resolved.
https://oralcancerfoundation.org/complications/mucositis/
What have you tried for oral mouth-rinses to reduce the pain?

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Hi @loribmt
Thanks for the info.
Yes, I am enduring this at home and agree it is brutal. Along with my shortness of breath I am almost crawling out of my skin.
I see my oncologist tomorrow and as of about 2 weeks ago my white blood cell count was still below normal.
I would welcome a hospital stay right now but with Covid they are running at capacity so admissions need to be mandatory.
I have no oral mouth rinses but possibly this will be added tomorrow.

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@srm

Hi @loribmt
Thanks for the info.
Yes, I am enduring this at home and agree it is brutal. Along with my shortness of breath I am almost crawling out of my skin.
I see my oncologist tomorrow and as of about 2 weeks ago my white blood cell count was still below normal.
I would welcome a hospital stay right now but with Covid they are running at capacity so admissions need to be mandatory.
I have no oral mouth rinses but possibly this will be added tomorrow.

Jump to this post

@srm. Ugh, this Covid pandemic sure compounds issues with being able to have the assistance you need to get through this period. I sure hope your white blood count raises soon. I’ve never had radiation but I know for chemo treatments, if white blood counts are super low during neutropenia they are boosted with an injection of Neulasta. Wonder if that’s an option for you?
The fear is with such a low count, the body is really a target for any infection. Until your WBC is back to at least low end of normal it will be hard for you to beat this mucositis. Not trying to sound discouraging but this is what I was told by my transplant team. And they were spot on. The second the WBC started going up, within a day, I was 90% better. It was dramatic.
You are to be admired for coping as well as you are! Brutal is a mild word for what you’re enduring. I hope you get some good news tomorrow with your oncology appt and some help with countering the side effects of that mucositis. Will they be able to tell you if the radiation treatments have worked for the cancer?

It will be interesting to see what your blood tests show regarding your WBC, hemoglobin and platelets. How long have you had the shortness of breath? Are you also low on energy?

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@loribmt

@srm. Ugh, this Covid pandemic sure compounds issues with being able to have the assistance you need to get through this period. I sure hope your white blood count raises soon. I’ve never had radiation but I know for chemo treatments, if white blood counts are super low during neutropenia they are boosted with an injection of Neulasta. Wonder if that’s an option for you?
The fear is with such a low count, the body is really a target for any infection. Until your WBC is back to at least low end of normal it will be hard for you to beat this mucositis. Not trying to sound discouraging but this is what I was told by my transplant team. And they were spot on. The second the WBC started going up, within a day, I was 90% better. It was dramatic.
You are to be admired for coping as well as you are! Brutal is a mild word for what you’re enduring. I hope you get some good news tomorrow with your oncology appt and some help with countering the side effects of that mucositis. Will they be able to tell you if the radiation treatments have worked for the cancer?

It will be interesting to see what your blood tests show regarding your WBC, hemoglobin and platelets. How long have you had the shortness of breath? Are you also low on energy?

Jump to this post

@loribmt
I ended up with 2 rounds of chemo (Cisplaten). I declined the 3rd because it would have killed me. I had 33 doses of radiation which ended July 9th.
Shortness of breath has been 4 weeks now.
Doing a slow walk around the block is like running a marathon.
I don’t have enough energy to do anything

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@srm

@loribmt
I ended up with 2 rounds of chemo (Cisplaten). I declined the 3rd because it would have killed me. I had 33 doses of radiation which ended July 9th.
Shortness of breath has been 4 weeks now.
Doing a slow walk around the block is like running a marathon.
I don’t have enough energy to do anything

Jump to this post

You poor dear!! I know well the ravages of chemo but I’m not had radiation. I’m going to tag one of my fellow mentors @auntieoakley who’s had radiation but for breast cancer. However she may have some insights for you as to how long the side effects of radiation last as far as fatigue and low white blood count.
I know you’re not looking for sympathy but I just have to say how sorry I am you’re having to deal with all of this. Cancer sucks. The tools and meds used to take on that foe darned near kill us in the process of trying to kill our attacker. I know there are days when we really wonder if the battle is all worth it.
My fingers are crossed for a good oncology visit today!

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@srm . I am sorry you are dealing with this, however there is help, there is a compounded liquid that is amazing. To help these heal. I know you are probably at your doctors appt. and they will be able to assess those mouth sores. As long as they are not fungal, they can prescribe it. Also I found that using children’s toothpaste or just baking soda helped them heal faster. I had a mouth full from the chemo. I suspect the short of breath and exhaustion is from the radiation. I wish I had a suggestion, but the truth is, you just have to let your body rest and heal. I was so tired every step at the grocery store was like I had run a marathon, and I took a couple naps to get through a workday. Did the doctor give you hope of relief for your mouth today?

REPLY
@auntieoakley

@srm . I am sorry you are dealing with this, however there is help, there is a compounded liquid that is amazing. To help these heal. I know you are probably at your doctors appt. and they will be able to assess those mouth sores. As long as they are not fungal, they can prescribe it. Also I found that using children’s toothpaste or just baking soda helped them heal faster. I had a mouth full from the chemo. I suspect the short of breath and exhaustion is from the radiation. I wish I had a suggestion, but the truth is, you just have to let your body rest and heal. I was so tired every step at the grocery store was like I had run a marathon, and I took a couple naps to get through a workday. Did the doctor give you hope of relief for your mouth today?

Jump to this post

@auntieoakley
I totally understand the fatigue. The simplest tasks do me in.
It was a good visit today. To start, my CT scan showed no indication of any remaining cancer. The words of my oncologist “you are cancer free” 🙂
My chest CT scan shows no indication of the shortness of breath issue. Plus my respiratory testing came back normal. I am waiting for an appointment date to see a specialist.
The doctor prescribed a mouth rinse that needed to be filled by a pharmacy that does compounding. It’s called Dr. Akabutus. Apparently named after the doctor who invented it.
The bonus is that my insurance paid for it👍
Hopefully, it will help a bit.

REPLY
@srm

@auntieoakley
I totally understand the fatigue. The simplest tasks do me in.
It was a good visit today. To start, my CT scan showed no indication of any remaining cancer. The words of my oncologist “you are cancer free” 🙂
My chest CT scan shows no indication of the shortness of breath issue. Plus my respiratory testing came back normal. I am waiting for an appointment date to see a specialist.
The doctor prescribed a mouth rinse that needed to be filled by a pharmacy that does compounding. It’s called Dr. Akabutus. Apparently named after the doctor who invented it.
The bonus is that my insurance paid for it👍
Hopefully, it will help a bit.

Jump to this post

It made a huge difference for me when my whole mouth and throat were filled with apthous ulcers. I am so happy to hear you are cancer free! Now just be gentle with yourself over the fatigue, you have been through a lot.

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