Diagnosed with MGUS and CHIP with M spike

Posted by mattymatilda @mattymatilda, Jun 14, 2024

For the last couple of years hematologist thought I had polycythemia. Today I was just diagnosed with MGSU and Chip..

Anybody else here diagnosed with both and do you know if that is common? Would love any experiences you’ve had with either.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for Ginger, Volunteer Mentor @gingerw

@mattymatilda Thank you for the update. I bet you have a lot of questions as far as where your journey will go from there. Be sure to checkout discussions for multiple myeloma within this blood cancers support group!

So glad you have a hematologist oncologist who specializes in mm. What treatment plan do they have set up for you?
Ginger

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@gingerw @mattymatilda Yes. Thank you so much for the update. You are so right. Every patient needs to advocate for him/herself. I’m glad you are getting answers and information about next steps.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@mattymatilda and @amyboylan1, CHIP stands for clonal hematopoiesis of indeterminate potential (CHIP). In plain language, clonal hematopoiesis is age related. In some people, the blood (hematopoietic) stem cells start making cells with a genetic mutation (error) that make them divide more rapidly than normal. Most people don't have symptoms and never even know they have this mutation. CHIP can lead to blood cancers, especially myelodysplastic syndrome and acute myeloid leukemia. This is rare, however, and most people with CH never get blood cancer. Read more https://www.mskcc.org/cancer-care/types/leukemias/risk-factors/clonal-hematopoiesis-ch

And in more medical terms, you can learn more in this scientific paper:
- MGUS and Chip: Two Faces, but Not of the Same Medal https://ashpublications.org/blood/article/138/Supplement%201/3800/482588/MGUS-and-Chip-Two-Faces-but-Not-of-the-Same-Medal


I hope this helps.

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@colleenyoung
Very interesting. I hope they are studying us at 91!

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Profile picture for mattymatilda @mattymatilda

Hello everyone,

I just wanted to check back in and let everyone know that I had another bone marrow biopsy a few months ago and am now diagnosed with multiple myeloma. The most notable symptom was the fatigue. It's indescribable so you'll notice it. I just kept thinking I was tired. Some of you know I had a difficult time getting this far to a diagnosis. I would recommend that you be your own Advocate and insist on getting your questions answered. Also, although no one wants one, the bone marrow biopsy can be the one test that lets your doctor know what's going on and it cuts down on the guessing that some doctors do when they don't know.
The last thing I've learned is Oncologists would rather say anything to you other than -- you have cancer. But their humanity makes it extremely difficult for them to say those words to one of their patients. Even if you're just doing a consult with another hematologist oncologist.
I'm in excellent hands now, with a wonderful doctor that specializes in MM. Let me know if you have any questions. I'm happy to try and help if I can as far as my experience. Sorry for the typos and grammar.

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@mattymatilda I am currently working with a hematologist/oncologist because of M-Spike and other abnormalities in my blood work. Just had more lab work done and will be going over those results next week. May I ask if the bone marrow biopsy is painful and are you in the hospital or as outpatient? Can you tell I am nervous of the unknown? Thank you for your support.

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Profile picture for mrsruby @mrsruby

@mattymatilda I am currently working with a hematologist/oncologist because of M-Spike and other abnormalities in my blood work. Just had more lab work done and will be going over those results next week. May I ask if the bone marrow biopsy is painful and are you in the hospital or as outpatient? Can you tell I am nervous of the unknown? Thank you for your support.

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@mrsruby welcome to Mayo Clinic Connect. I’m so glad you found us. I have not yet had a BMB but many of our members have.
I’ll post a link to that discussion.

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Profile picture for Patty, Volunteer Mentor @pmm

@mrsruby welcome to Mayo Clinic Connect. I’m so glad you found us. I have not yet had a BMB but many of our members have.
I’ll post a link to that discussion.

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Profile picture for mrsruby @mrsruby

@mattymatilda I am currently working with a hematologist/oncologist because of M-Spike and other abnormalities in my blood work. Just had more lab work done and will be going over those results next week. May I ask if the bone marrow biopsy is painful and are you in the hospital or as outpatient? Can you tell I am nervous of the unknown? Thank you for your support.

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@mrsruby hi there. I'm sorry to hear you're going through all that. For your bone marrow biopsy be sure and tell your doctor you need sedation. You must request it with your doctor and he must request it with the hospital. I've had two bone marrow biopsies. The first was without sedation and the second one was with sedation. The second one was much much easier. It was the kind of sedation you get when you're having a colonoscopy. When I open my eyes and woke up I didn't realize that the procedure was over. You just don't want to show up for your appointment and be told your doctor didn't request sedation. Good luck it will be fine. 😊

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Profile picture for Patty, Volunteer Mentor @pmm

@gingerw @mattymatilda Yes. Thank you so much for the update. You are so right. Every patient needs to advocate for him/herself. I’m glad you are getting answers and information about next steps.

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@pmm
I do feel a lot better just because I know my diagnosis. I spent years trying to get it. Thanks for your kind response.

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Profile picture for Ginger, Volunteer Mentor @gingerw

@mattymatilda Thank you for the update. I bet you have a lot of questions as far as where your journey will go from there. Be sure to checkout discussions for multiple myeloma within this blood cancers support group!

So glad you have a hematologist oncologist who specializes in mm. What treatment plan do they have set up for you?
Ginger

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@gingerw hello. Thank you for your nice reply. I do not have an exact treatment plan yet. I am undergoing lots of tests to see if I qualify for any clinical trials. Just started chemo.

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Profile picture for mattymatilda @mattymatilda

@mrsruby hi there. I'm sorry to hear you're going through all that. For your bone marrow biopsy be sure and tell your doctor you need sedation. You must request it with your doctor and he must request it with the hospital. I've had two bone marrow biopsies. The first was without sedation and the second one was with sedation. The second one was much much easier. It was the kind of sedation you get when you're having a colonoscopy. When I open my eyes and woke up I didn't realize that the procedure was over. You just don't want to show up for your appointment and be told your doctor didn't request sedation. Good luck it will be fine. 😊

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@mattymatilda Thank you for the information. I have written your suggestions down in my notes. I'm so thankful for this support group.

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Profile picture for mattymatilda @mattymatilda

I just turned 59. I didn’t realize that was considered elderly! Wishful thinking on my part! 😊

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@mattymatilda not old! My theory, which I think is valid, is they originally only tested the elderly. Now they are finding many things “reserved” for the elderly in younger folks because they are doing the tests to look. Sure, everything is more common in the elderly, but I think, and we are finding, many younger folks have these disorders as well. Even middled aged folk like us!

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