MALT Lymphoma of the bladder and trouble with pain control

Posted by atschirley @atschirley, May 4, 2022

Hello. My name is Adele. In August of 2020 I had all the symptoms of a UTI, but tested negative. Over the next 9 months I had four more episodes, always testing negative, but pain and discomfort started to increase. Finally referred to a Urologist for a cystoscopy and they found and ultimately removed a "patch" in the bladder. ever since the biopsy, my pain has been variable, but reasonably well contained with Percocet. But this unrelenting pain led me to the Mayo where a final diagnosis of MALT Lymphoma was made. I just got back from 3 weeks of radiation therapy at the Mayo and now my pain levels are through the roof and cannot be controlled with Percocet. Does anyone have any suggestions? I am doing meditation, breathing and yoga (when possible), but nothing helps….

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Hi @atschirley Adele. Welcome.
I moved your questions to the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) and the Cancer: Managing Symptoms group (https://connect.mayoclinic.org/group/cancer-managing-symptoms/) so connect you with other members like @jjohnson8747 @caringwife @sepdvm @sue225 and @grandpabob. I'm hoping that they may have some suggestions for managing the pain.

Adele, have you written to your cancer team through the Mayo Clinic patient portal? A symptom management nurse may be able to offer pain management medications or strategies to help. Is the pain specific to the bladder and urinary tract? Can you describe it?

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@colleenyoung

Hi @atschirley Adele. Welcome.
I moved your questions to the Blood Cancers group (https://connect.mayoclinic.org/group/blood-cancers-disorders/) and the Cancer: Managing Symptoms group (https://connect.mayoclinic.org/group/cancer-managing-symptoms/) so connect you with other members like @jjohnson8747 @caringwife @sepdvm @sue225 and @grandpabob. I'm hoping that they may have some suggestions for managing the pain.

Adele, have you written to your cancer team through the Mayo Clinic patient portal? A symptom management nurse may be able to offer pain management medications or strategies to help. Is the pain specific to the bladder and urinary tract? Can you describe it?

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thank you for your help. I contacted my radiation oncologist on Monday and he called in some prescriptions on Wednesday which will be ready on Friday. so I just have to bear it until then. the medications are dexamethasone and hydromorphone, neither of which I've ever taken…..I'm pinning my hopes on these two in combination to provide some relief. I've never felt so miserable.
The problem was diagnosed in the bladder, but the pain has been going on for so long, that now the whole pelvis seems involved and there isn't even language to describe it anymore. Pain much worse since biopsy on 9-21, worse still after 4-22 radiation.

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@atschirley

thank you for your help. I contacted my radiation oncologist on Monday and he called in some prescriptions on Wednesday which will be ready on Friday. so I just have to bear it until then. the medications are dexamethasone and hydromorphone, neither of which I've ever taken…..I'm pinning my hopes on these two in combination to provide some relief. I've never felt so miserable.
The problem was diagnosed in the bladder, but the pain has been going on for so long, that now the whole pelvis seems involved and there isn't even language to describe it anymore. Pain much worse since biopsy on 9-21, worse still after 4-22 radiation.

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I am so sorry you are experiencing such misery. My husband had bladder cancer but had little pain with it, a different type than yours. My experience with head and neck cancer and radiation included oral pain after radiation. Dexamethasone was helpful in quieting the inflammation. My experience as a veterinarian says that your long term pain has been "amped up" by your nervous system, as chronic pain seems to sensitize nerves to increase the pain sensations. If the steroid and hydro do not relieve you enough, I would recommend a pain management specialist who may use things like a TENS unit or drugs like Gabapentin or Amantadine to help block the pain signals. Keep seeking out the experts until you get relief. I am sure Mayo has an excellent Pain Management team. Good luck .

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@sepdvm

I am so sorry you are experiencing such misery. My husband had bladder cancer but had little pain with it, a different type than yours. My experience with head and neck cancer and radiation included oral pain after radiation. Dexamethasone was helpful in quieting the inflammation. My experience as a veterinarian says that your long term pain has been "amped up" by your nervous system, as chronic pain seems to sensitize nerves to increase the pain sensations. If the steroid and hydro do not relieve you enough, I would recommend a pain management specialist who may use things like a TENS unit or drugs like Gabapentin or Amantadine to help block the pain signals. Keep seeking out the experts until you get relief. I am sure Mayo has an excellent Pain Management team. Good luck .

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Thank you very much for your suggestions and for just taking the time to write…..this experience can be very isolating. I sometimes feel so sick of myself that I'm sure that friends feel the same.
MALT Lymphoma that is confined to the bladder is very rare, and as such, there are not many proven protocols to draw upon. It's considered an indolent cancer, so at 61 I was quite sure I wouldn't deal with it at all….except for the unrelenting pain. I have taken my first dose of Dexamethasone and one hydomorphone and have found some relief. I do take note of your comment about the nervous system being amped up and super reactive after all this time and I'm in agreement. I'm hopeful that the steroids and the proper pain medication will set me on the right track and give me room to pursue a lasting solution.

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Adele here again. Has anyone had the experience of getting no pain relief from 2mg/4hours of hydromorphone? This was prescribed as an improvement over Percocet, which I have always taken sparingly, so I have never built up a tolerance for pain medication. I’m at a loss…..hydromorphone has zero productive pain relief. Thoughts?

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@atschirley

Adele here again. Has anyone had the experience of getting no pain relief from 2mg/4hours of hydromorphone? This was prescribed as an improvement over Percocet, which I have always taken sparingly, so I have never built up a tolerance for pain medication. I’m at a loss…..hydromorphone has zero productive pain relief. Thoughts?

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@atschirley, has your team been able to help you find pain medication that helps?

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Yes, thank you for asking. They told me I could double the dose every four hours which would have saved me a lot of misery in the beginning stages.
I only had to do this for two days, then it seems I had enough on board over the next three days to provide substantial relief. Now I’m starting to really taper down in a successful way and hopeful that I will only need to take a dose when necessary.

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Has anyone out there been diagnosed with MALT Lymphoma?
I’m a 62 year old female, they found mine in the bladder. (More commonly found in stomach). Would anyone be willing to talk about their journey?

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Hello again. I am 2 months+ since my last day of bladder radiation for MALT Lymphoma. I am still experiencing urinary frequency, 5-6 times at night, burning urination, lower back pain and substantial pelvic discomfort. I’ve taken myself off all pain medication so I could have a clearer sense of what was actually going on.
I have gone from someone who was a regular runner and hiker to barely being able to do basic yoga without pain. Also….I now seem to have joint issues I’ve never had before.

Has anyone else experienced bad or worse symptoms after bladder radiation? I’m a woman, btw, that might have some bearing on responses.

Thank you in advance for any willing to share experience.

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