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MDS-CMML-1: Anyone dealing with pruritus (itching)?
I have been diagnosed with MDS-CMML-1 and am experiencing bad Pruritus (itching) in the mornings/evenings and after I shower. Does anyone have the same symptoms and any suggestions on a remedy?
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2 weeks ago diagnosed with CMML 1 with Myelofibrosis 3+/3, after my 3rd Bone Marrow Aspiration in January.
I will see the Stem Cell Transplant team next week to begin the process for Stem Cell Transplant.
The only thing that helps me at all is ICE !!! Often meaning most of my legs and arms are covered in icepacks and when I run out of cold ones, ziplock bags full of ice cubes. I don't go anywhere without ziplocks-just in case.
I pray treatment will get rid of this awful severe Itching I have had since October 2023. Almost every day, often twice a day lasts from just 2 or 3 hours to 8 or more hours. Wakes me up from sleep.
Its exhausting and often miserable. I have tried every applicable specialist, medications, creams, elimination diets...many, many tests. Beyond Ice, nothing else has helped.
I wish you all the best.
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6 Reactions@carolgk Ask your doctor to try an SSRI, like Zoloft, Cymbalta, Lexapro. For some reason serotonin antagonists seem to stop the itch.
@carolgk Oh gosh, Carol, my heart goes out to you with the relentless itching! @rogelling had some great suggestions in their reply for you. I know I had severe itching as well before being diagnosied with another form of leukemia. It was horrible. My family doctor never picked up on that often being a symptom of blood cancers.
You mentioned an upcoming stem cell transplant. I’d be happy to ‘connect’ you with other members who have undergone this procedure. Will this be an ASCT (autologous stem cell transplant) using your own cells or will this be with donor cells?
@rogelling Thank you for suggestions. I have been on Cymbalta for over a year. No change.
I just started Vonjo, to help with symptoms.
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1 Reaction@loribmt Thank you. Im sorry you suffered as well. Many physicians are not aware, apparently.
I see the team in 6 days to learn more. I will have donor cells for the SCT.
Yes, please I would appreciate connecting with others. Thank you
@carolgk Hi Carol, You have a bit of an adventure ahead with the upcoming allo-stem cell transplant, also referred to as a bone marrow transplant (BMT). You’ll learn more as you meet the transplant doctor and their team next week.
After that meeting, I know from experience, you’re going to have a ton of questions. It can be incredibly helpful and comforting to be able to talk with others who have walked this same path! There are a growing number of us who have also had a BMT for various blood related cancers, including myelofibrosis, MDS, CMML, AML, etc.. So we know what it’s like to be overwhelmed with the information along with the logistics of making it happen. But it’s so worth the effort to be given a 2nd chance at life.
Many of us have shared our journeys in this discussion I started several years ago. It’s still relevant as we just keep adding to it!
~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Another helpful discussion is this list of resources for allogeneic bone marrow transplant information:
Resources: https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-websites/
You are already heading to a transplant, so that may be your main focus now…but I thought you might be interested in speaking with other CMML and Myelofibrosis (MF) members as well. Here are the results of both of those searches:
CMML. https://connect.mayoclinic.org/search/
MF https://connect.mayoclinic.org/search/
I’ve given you a lot of information to start with. As you get closer to your transplant, please don’t hesitate to post questions or concerns in this discussion (same as above) https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
That way fellow BMT peeps will be right there to answer your questions from everything to ‘what to pack for a long hosptial stay’ to what it’s like every step of the way.
Are you near your transplant center or will you have to relocate?
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2 Reactions@carolgk you might try a different one. Cymbalta is also a sympathetic antagonist so it is different.
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1 Reaction@loribmt
Thank you for all of this. I have been reading quite a lot since diagnosis, the information links you provided is very helpful. Hearing others experience is helping me mentally to prepare for this journey.
Yes, we are an 80 minute drive to Mayo in Jacksonville.
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2 ReactionsYes. I have Myelofibrosis “and” Erdheim Chester Disease, and the first sign - although no doctor attributed it correctly at the time - was uncontrollable thoracic itching. It has since stopped, probably because the disease evolved into a later stage. But, what stopped my itching episodes almost instantly whenever they occurred was Xanax. Why? I don’t know. But, when you’re itching, and you want to jump from the roof to make it stop, you don’t care. Xanax does it. .25 mg per day is what I’m on now.
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2 Reactions@carolgk Xanax!!! Xanax stopped mine in its tracks, and the itching was horrible.
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