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 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.

Jump to this post

@mrsruby Let me add my welcome to Mayo Clinic Connect. I have had 4 BMB, all without sedation. So much depends on the practitioner's experience when the do the procedure, is what I found out. My previous oncologist did my first one, and it was uncomfortable. The last 3 have been by my current hematologist oncologist, and I barely felt anything. I was able to drive my 2 hours back home right away, after each one!

You may experience some localized discomfort. They will use a numbing agent topically [usually lidocaine]. You will probably feel pressure as they use a tool to access the bone marrow. What my guy does is have his nurse right there with me, to talk and distract me, keep my focus off the procedure. We have a good time, laughing about all kinds of things, and she will also rub my hands or arms to distract my physical response. They have a real good system down for doing that!

Please let me know if I can help in any way?
Ginger

REPLY
Profile picture for amberl99 @amberl99

@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!

Jump to this post

@amberl99 hello! Totally agree! But this is one of the explanations you will receive quite often from doctors when MGUS is discovered. "You have mGUS because of your age. Many people your age have MGUS."
Even with certain blood test results, they will contribute it to your age instead of looking for MM or Lupus.I guess my point is, don't always believe that.
I also learned some of the more important things to look for on my lab test results. That was very helpful because it helped me to know what questions I needed to ask. Example. Many doctors won't say anything unless you ask. Thanks! 😊

REPLY
Profile picture for Ginger, Volunteer Mentor @gingerw

@mrsruby Let me add my welcome to Mayo Clinic Connect. I have had 4 BMB, all without sedation. So much depends on the practitioner's experience when the do the procedure, is what I found out. My previous oncologist did my first one, and it was uncomfortable. The last 3 have been by my current hematologist oncologist, and I barely felt anything. I was able to drive my 2 hours back home right away, after each one!

You may experience some localized discomfort. They will use a numbing agent topically [usually lidocaine]. You will probably feel pressure as they use a tool to access the bone marrow. What my guy does is have his nurse right there with me, to talk and distract me, keep my focus off the procedure. We have a good time, laughing about all kinds of things, and she will also rub my hands or arms to distract my physical response. They have a real good system down for doing that!

Please let me know if I can help in any way?
Ginger

Jump to this post

@gingerw Thank you so much for sharing your personal experience. My hematologist/oncologist has been great to me and we find some laughter with some his ideas.....I will be finding out more after next week about future tests. I have a list of questions for him, though he usually answers most of them during the appointment. Thanks again. LR

REPLY
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.

Jump to this post

@mattymatilda ownership I felt like you have written my story. I have an oncologist hematologist that will not say the words. I am scheduled for my first bone marrow biopsy on Tuesday. I’m terrified not of the biopsy but the results. I was a year ago diagnosed with MGUS and I have suffered. Chronic fatigue has changed my trajectory of my life. I am so slow and wobbly and tired all the time I’m 77 and prior to last year I was busy Active, grandma of six world traveler and active member of my community in church. This has totally put the brakes on my life and I just struggle each day to get out for my 2 mile walk and it exhaust me to the point that I can do nothing else. The doctor said I may have slipped to marginal splenic lymphoma, but we just don’t know yet of course. Texas Oncology has been short on getting four page signed pathology report over to the hospital so they can set up my appointment. The scheduler at the hospital took pity on me and went ahead and scheduled an appointment so I could arrange for my son to take me. So I have it scheduled, but they don’t have the proper documents yet. Hopefully they will have them by Monday. How hard can it be to fax over four pages signed by the doctor. Nevertheless, I appreciate what you have said about the bone marrow biopsy because I need to know what I’m dealing with. The uncertainty is making my mind go to the dark side and I don’t need that. I need information I can work with. I think I can work with anything if I know what it is. I hope things go well for you. I hope you get the diagnosis and the treatment you need and deserve. We all need that. I just want to be someone’s priority. And yes, I’m in Houston and wouldn’t it be wonderful if I could go to MD Anderson However my insurance doesn’t go there isn’t that special ? My husband had cancer and was able to go to MD Anderson because he was still working and had the best insurance money goodbye. But it was before he retire he didn’t get to retire. There is not a Mayo Clinic near me either, I would have to do some serious traveling, but I would do it. If someone said come we have a trial going on. Come check us out I would do it. I want to live my goal for my whole life was 105 and this might just cut me short.

REPLY
Profile picture for 4kleo @4kleo

@mattymatilda ownership I felt like you have written my story. I have an oncologist hematologist that will not say the words. I am scheduled for my first bone marrow biopsy on Tuesday. I’m terrified not of the biopsy but the results. I was a year ago diagnosed with MGUS and I have suffered. Chronic fatigue has changed my trajectory of my life. I am so slow and wobbly and tired all the time I’m 77 and prior to last year I was busy Active, grandma of six world traveler and active member of my community in church. This has totally put the brakes on my life and I just struggle each day to get out for my 2 mile walk and it exhaust me to the point that I can do nothing else. The doctor said I may have slipped to marginal splenic lymphoma, but we just don’t know yet of course. Texas Oncology has been short on getting four page signed pathology report over to the hospital so they can set up my appointment. The scheduler at the hospital took pity on me and went ahead and scheduled an appointment so I could arrange for my son to take me. So I have it scheduled, but they don’t have the proper documents yet. Hopefully they will have them by Monday. How hard can it be to fax over four pages signed by the doctor. Nevertheless, I appreciate what you have said about the bone marrow biopsy because I need to know what I’m dealing with. The uncertainty is making my mind go to the dark side and I don’t need that. I need information I can work with. I think I can work with anything if I know what it is. I hope things go well for you. I hope you get the diagnosis and the treatment you need and deserve. We all need that. I just want to be someone’s priority. And yes, I’m in Houston and wouldn’t it be wonderful if I could go to MD Anderson However my insurance doesn’t go there isn’t that special ? My husband had cancer and was able to go to MD Anderson because he was still working and had the best insurance money goodbye. But it was before he retire he didn’t get to retire. There is not a Mayo Clinic near me either, I would have to do some serious traveling, but I would do it. If someone said come we have a trial going on. Come check us out I would do it. I want to live my goal for my whole life was 105 and this might just cut me short.

Jump to this post

@4kleo i'm so sorry to hear what you're going through. I completely understand. It is beyond frustrating to keep being pulled along without knowing what's happening. The fatigue you describe is exactly like mine. It's like I can only do one thing per day. Cook a meal. That's all I can do for the day. Go get groceries. That's all I can do for the day.
I'm glad you feel good about the bone marrow biopsy. Just remember to ask for the sedation from your doctor. You won't feel a thing and they got my results back within four days. Sending all my good thoughts your way please stay strong and I'm sure once you have some answers It will be much easier.

REPLY
Please sign in or register to post a reply.