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Diagnosed with MGUS and CHIP with M spike
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.
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@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
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3 Reactions@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! 😊
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3 Reactions@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
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2 Reactions@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.
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2 Reactions@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.
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1 Reaction@4kleo
Hi just read this and I am angry on your behalf!!
Are you saying MD ANDERSON DOES NOT TAKE MEDICARE ??
You can still change to another insurance before December 5 or 7 th
What ever you do ! Get insurance which will cover good cancer center!!
I have Medicare advantage plan ! They are helping me pay for my life saving drug !!
My husband insurance company would not pay for it !! Just example how different coverage can be!!
I am assuming you are on Medicare because of your age !! I hope you have some one to help you with good insurance coverage!!
Maybe I am wrong but I CAN NOT IMAGINE THAT HOSPITAL LIKE MD ANDERSON DOES NOT ACCEPT MEDICARE
GOOD LUCK WITH THAT
@gingerw
Hi Ginger ! If I may. I want to disagree with you about how a bone marrow biopsy feels ! I had totally of three in doctors office with just some lidocaine or something like it !! The third biopsy was very painful and if I was not lying down ! I would have passed out !
My last BMB WAS DONE IN A HOSPITAL UNDER SEDATION ! Anaesthesia!!
BEST DECISION I MADE ! No pain
They got fluid and bone samples and felt nothing !!
My point is , that not all of us are so lucky to have such a pleasant experience with invasive procedure like BMB ! My doctor s nor the nurse who did the biopsy informed me what was really going to happen! Not that it could be very painful!
So for the last MBM ! I was not going to put myself through that! I only share my experience because if I was told how invasive and painful it would be , I would have insisted that it was done under anaesthesia!
Thank you for sharing your experience! Hanya
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2 Reactions@hanya I have opted to wait on the BMB as my “numbers” are low but when I do, I definitely want sedation.
Ginger is a warrior queen! Not me! 😉
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2 Reactions@hanya Couldn’t agree with you more on bmb. I have had 2 first one in hematologist office. It was very very uncomfortable and my blood pressure dropped so much I had to stay there an hour with an IV to raise my pressure. Second one done in hospital under local anesthesia and it was piece of cake. Will only get done in hospital in future
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1 Reaction@hanya And, once again, we have an example that shows how everyone's experience can be so different, right? I am not saying this to be snarky of condescending, please understand that! It is very similar to the fact that different medications may have different results for us, may not work for us like they do for someone else. We are unique persons, even when we share a common diagnosis. I am glad you shared your experience here. We are lucky to be able to make decisions about our treatments and how they are done.
Ginger
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