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Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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Welcome @gilash1965. I moved your post about living with MGUS for the past 2.5 years to this existing discussion:
- I'd like to connect with other MGUS people: https://connect.mayoclinic.org/discussion/mgus-diagnosis-1/
I did this so you can read previous posts and connect easily with members like @bonniecanby @anng53 @pdyer134 @ea1 @anniemaggie @pmm @mitten @lynne756 @tallyteresa @raye @red7 @michelle151 and many more. They can share their experiences of whether or not they have had a bone marrow test done or not, when and why.
It sounds like you've done due diligence in getting a second, third and even fourth opinion to feel confident that a bone marrow biopsy is not necessary for you at this time. Is that correct?
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2 ReactionsThank you, Colleen. I’m glad you found something about my comments worthwhile and hope they can be helpful to others. My rheumatologist diagnosed my IgM was elevated. That meant I had MGUS. He sent my test results to my PCP who should have sent me to a hematologist but she didn’t. So I chose one at random and he said goodbye before saying hello. He did very few blood tests. Didn’t like him. That’s why I went to Mayo Clinic, though it turned out to be more helpful with other health concerns. Dr. Lusk knew less about some things than I did and he was not helpful with hematology. Next I went to City of Hope. Dr. Rosenzweig said I had leukemia. Why do you say that? Because I don’t have MGUS in my computer pull down list. He really said that. Obviously I was in the wrong place! Then I went to hematologist James Berenson. He knew how to game the system to get $300,000 annual income from drug companies for testing their new products on patients. (Check docs in ProPublica Dollars for Docs.) He wanted to make me into one of his test subjects. On my first and only visit he asked me to sign a 14 page agreement giving him permission to test things on me. No thank you! Of course he was eager to do a bone marrow biopsy! Time to leave. He had already revealed his true color.
After this round about journey, eventually I got a referral to a hematologist I like. It's been a couple of years with him so far. He's ordered a variety of blood tests and genetic studies. (All genetic were negative, which is good. At least he looked.) More specific diagnosis is that I have IgM kappa MGUS. A painful bone marrow biopsy has not been otherwise been recommended since diagnosis seven years ago. A CT scan was done. See Robert A Kyle's writing on Bone Marrow Biopsies, 1987. He put the US in MGUS and is a great gift to our field of need He did not recommend BMB for IgM MGUS. Some patients may need this test, which will be worthwhile to undergo when they do. A friend who had it said he wished he had been under anesthesia for the procedure.
And now for something completely different: I'm in a quandary about a question to my hematologist which he did not answer. I had asked why my ferritin is low and his conversation went to all sorts of things. I found myself subsequently sending him contacts which could be helpful to his Prius or his broken refrigerator. Poor guy. A storm of things went wrong in their house, and he loves playing ice hockey(!) Don't you love non-sequiturs?
However I still do not know why my ferritin is low. What do you suggest? Just write him a direct question repeating this concern? Sometimes one does not know how to gently be repetitive without fearing coming across as assertive. Sorry for this long journey-in-healing diatribe, dear Colleen. Cheers! Happy healthy new year!
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I've had 2 or 3 bone marrow biopsies since learning I had MGUS 11 years ago. All were at my request, performed at Mayo Clinic JAX, and virtually painless. I did feel the lidocaine injection and
then some brief pressure, but it was over within 20 minutes after I arrived at the clinic. Bless my late husband's heart, his own quarterly bone marrow biopsies for most of 14 years due to a rare form of CLL really were painful. I was allowed to watch all but one of his in various clinics around the country and they were so painful he'd be in bed for 2 days after. I learned too late for him that it matters who does them and where. At Mayo JAX for example, you have 2 nurses who each do 7 bone marrow biopsies every work day and it shows. Subsequent biopsies have been as easy as my first, so for me, it
was an reasonable ask to reassure myself that an increase of plasma cells weren't the cause of new symptoms. Two primary cancers were found early in my own body in the past 2 years because of one routine screening and another one scheduled a year early because of a gut feeling one of my Drs and I had about my low ferritin. So I personally am reluctant to dismiss the value of having what has been an easy for me "screening" of my bone marrow for anyone who wants one for peace of mind if nothing else. Nor would I say to you or anyone else that the choice not to have one isn't the right choice for you unless it is only because you think it's going to be painful which doesn't seem to be the case here. Anyone who
is concerned about the possibility of pain should be aware though that they can request light anesthesia if they feel they want or need it.
I'm actually seeing Dr Ailawadhi again this month and plan to ask his opinion about doing another biopsy since it's been 3 years and there are some changes. My involved light chain went off the chart after steadily increasing over the years, I'm having more iron infusions, recurrent infections, and Bence Jones protein popped up in the 24 hour urine for the first time. I have developed neuropathy, am fatigued, and recently, a CT scan for something unrelated shows a healed spontaneous rib fracture that wasn't there last year. And my ANA came back positive though the
associated autoimmune disease markers were negative. The rib could be from a short round of radiation and the ANA could be from previous COVID infection, but taking another look seems prudent since we have learned from the Icelandic study that anyone can progress at any time. For the newly diagnosed, I am excited to see that a new formula was recently revealed at ASH I believe that determines when a baseline biopsy should be performed vs not that appears to be so stunningly accurate, it will likely replace the standard protocol established by the Dr who discovered
and named MGUS, Richard Kyle from Mayo Rochester decades ago. Cancer research moves at lightning speed and the use of liquid biopsies at Dana Farber and elsewhere is also promising as a possible replacement for traditional bone marrow biopsy methodology. I applaud you for taking a deep dive and for seeking
opinions from some of our best researchers. One thing I've learned over the four decades of advising newly diagnosed cancer patients is they need to get to an NCI designated Comprehensive Cancer Center before the first treatment is administered. Data is undeniable - patients who seek counsel at these centers live longer and better. Best of health to you 🙂
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4 ReactionsI will have to explore the liquid biopsies. Interesting, thanks!
PMM
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1 ReactionWoooh! Formatting must have had a seizure during the repost!
Welcome @raye
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2 Reactions@tallyteresa, you are an inspiration! I appreciate your in depth research and following your hunches on looking into low ferritin. You encourage me to dig into my own low ferritin cause with two of my doctors. And I’ll now research liquid biopsy. I contribute my blood to DFCI’s PCROWD research and encourage relevant others to do so also.
For @gilash1965, regarding MGUS, there are different types, for IgM MGUS Dr. Kyle did not advise BMB several years ago. He may have advised it for IgG MGUS at the time. And medical research is dynamically moving on. Concurring to get other opinions before deciding against following medical advice.
Regarding connecting with a Comprehensive Cancer Center, I’m uncertain how to determine the rating of mine. Cedars-Sinai’s Tower Hematology/Oncology in Los Angeles is one I’m using.
Thank you again, Telly Teresa. I will pursue learning the cause of my low ferritin.
May we all keep on keeping on!🤗 HUGS🤗
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3 ReactionsHi @raye, I fixed the odd formatting issues with your post. I think the extra coding was added when replying by email.
With respect to your question about following up with your physician about your low ferritin, I recommend that you send your question through the patient portal if you have one. If now, it sounds like you have a communication chain with him. Email? Then I would use that.
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4 ReactionsThank you very much, Colleen.
I’m very fortunate to have been given the direct email addresses by both my PCP and hematologist. I try not to overly use them. However pursuing the cause of low ferritin is important.
Please know that I value you.
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4 ReactionsLooks promising in that myeloma cells usually appear in a patchy areas in the marrow as I understand it whereas serum (blood) likely provides a more accurate picture of what's going on throughout it. Let us know if you learn more on how close they are to shifting to liquid or if it still seems an acceptable replacement, please.
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