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Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait
Interested in connecting with others with the same diagnosis. Looking into dietary changes that could help.
I will introduce myself to the group. This will be long so sorry in advanced.
I was a Lab Tech for 15 years so of course we ran test samples on ourselves in training. I have always had an elevated ESR - I put that down to allergies. Jump ahead to 2013 I started to have GI issues plus a couple of cycles of Diverticulitis. Local doc ran a panel for Celiacs but the was negative but the IgA was 1533 mg/dl, no follow-up even though I asked. GI symptoms went away. 2019 started having issues with GI again plus a slightly decreased Hgb not bad but put me through colonoscopy and upper GI - nothing remarkable. Blood work the IgA was now 1960 mg/do. Total Iron was slightly decreased so just put me on over the counter Iron supplements. Fast forward to June 2020, gi issues (diarrhea for 6 weeks) - local doc ignored it. At that point I requested a referral to Mayo Clinic/Rochester. Through all of the testing for GI issues which nothing found remarkable, I asked about the IgA which they ran again, came back 2350 mg/dl. Also C Reactive Protein was elevated. They referred me to a Rheumatologist who ran all of the RA type testing but included the MGUS screening. I have an M Spike of 1.6 mg/dl. Low Lambda Light Chain but Kappa was right on the top end so the Kappa/Lambda Ragio is a little over 5.0. Also re ran the Immunology levels IgG low at 326, IgM low at 10 and IgA still at 2350. So the RA doc referred me to Hematology. They ordered Iron studies which are normal now, CT Skeletal no lesions seen, and Bone Marrow Biopsy - came back as Plasma Cell Myeloma with approx 20% plasma cells. Slightly hupocellular. Plasma Cell morphology abnormal large cells with large nucleoli and binucleation. Plasma Cells express: monotypic kappa light chains, CD38 & CD138. They do not express CD18 or CD45.
Final DX after meeting with specialist.
Smoldering Multiple Myeloma Subtype IgA Kappa Light Chain with an average risk of progression. 20% Plasma Cells, 1.6 M-Spike, 5 Kappa/Lambda ratio. On FISH I do have the 1q gain marker. At this point I am at a Watch & Wait with blood & physical exam every 3 months.
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Being 68 yr old on Medicare and the delay of correct diagnostics ! And leaving Hospice in April cause my local oncologist referred me to radiation oncology but again another test incorrectly performed and ? Of what happened ! I am not going back to local oncologist as I have no trust left so what do I do ??? The radiation oncologist suggested Mayo as he is a affiliated with Mayo and I know Mayo is the only place to get a confirmed diagnosis and repeat PET scan even if I have to pay for it as no one deserves to suffer with tests not completely done or wrong test done ! I can’t believe I was a former RN and going thru this as I would like to give up but something is keeping my brain alive with a disabled broken body with heart attacks, blood clots ( I have Quebec Platelet Disorder dx my Mayo in 2018 with widespread worsening Livedo whole body but no hem wants to deal with it even though there are labs and drugs to treat high lipoproteins and fibrinoloysis ) neuropathy limbs, falls, and just a array of issues ! And not to mention my NASH and 53 inch waist but accused of being alcoholic by one oncologist ! Reallly !! How much more can one person take
Yes my local radiation Oncologist referred me back to Mayo last week as PET scan incorrect ! Have dx code C40.22 cancer L fibula on 8/2022 2nd opinion MRI by local orthopedic referred by oncologist after 2020 PET scan showed 3.6 suv ! Prior to that marrow bone showed CD138 showed rare positive plasma cells?? Then bone biopsy showed multiple C+ cells with 20% lambda kappa suggesting B cell lymphoma but no flow cytometry done??But why 2 years and the long wait as my qol is null as I am barely able to care for self and do not know how many more days, months years of testing I can tolerate as my health has failed dramatically and I if Mets all I want is a confirmed diagnosis and go back on hospice as I foolishly went off for chemo or radiation but PET wrong ! as I need a fresh diagnosis PET scan and probably flow cytometry to confirm ! I hope Mayo can do as much as I need in couple visits ! I also sent all my imaging to the person I spoke to and hope she got them!
Do I wait for Mayo Oncology to call after they review my records??
Thanks for your reply
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1 Reaction@cathy56 Welcome to Mayo Clinic Connect. I see you have been a member here for a while, and this is your first post.
Have you asked your local oncologist about contacting Mayo Jacksonville for their input? With a diagnosis of MGUS a decade ago, have you been followed by a hematologist since then for periodic monitoring of those symptoms? From your post, it seems like you are dealing with more than one condition right now, and that certainly can contribute to a lessened sense of quality of life! Perhaps your local cancer clinic has a patient advocate or social worker who can help you?
Ginger
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4 ReactionsI have been dx MGUS decade ago went to Mayo in FL in 2018. My 24 hr proteins were 1000 and slight beta globulin fraction but then R shoulder pain constant worse at nite so MRI shoulder indicated metastatic disease in 2018 and 2020 marrow showed C138 rare positive plasma cells then a bone biopsy suspected B cell lymphoma but no flow cytometry done as I awoke during bone biopsy finally PET scan indicated focal osseous bone lesion L lower limb dx C40.22 cancer Mets but I foolishly left hospice in April referred by Ocala, FL oncology to a radiation oncology for chemo or radiation therapy and have special PET scan in Ocala only to have wrong scan done they did only knees up with radioactive serum! This was done 2 months ago and now they want me to go to Mayo and how much can a patient take when my health and QOL has diminished with other symptoms that effect quality life and why can’t local oncologist contact Mayo resources for better outcomes for patients! It is discouraging.
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3 ReactionsHi again. Since you are getting a lot of suggestions from others I thought I would tell you a little bit about what I learned over the past 20 years regarding your questions. First of all, as a Registered Nurse I always suggested that people facing a serious diagnosis find out where they know the most, see the most and do the most regarding their diagnosis. That took me to Mayo Clinic in Minnesota in 2002. They have a team of myeloma specialists, and my doctor there works with my local oncologist in all ways requested and needed. In fact Multiple Myeloma was identified and named there many years ago. Secondly, there is no cure for myeloma, but there is a chance that during your wait and watch you never do need treatment. In that case the treatment is much more of a serious risk to you than watching and waiting. As I said, I enjoyed a wonderful 14 years on watch and wait before I even needed treatment . I was in remission by 2019 and still have not gone back on treatment even though I came out of remission a year later. I would be happy to help you navigate that waiting so it does and take over your life. Nancy
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6 ReactionsIt is great that your husband knows how to do research. I don't , but that does not stop me from having opinions based on what little I do know (ha ha).
As a starting point, maybe your husband could find, or get help in finding, a survey article that describes approaches to treating smoldering myeloma.
The National Institutes of Health (NIH) has a clinical trials database, but I guess you already know that. As an organization, NIH issues grants to fund about 90% of its research, but about 10% is done on the NIH campus in Bethesda MD.
When I was diagnosed with AML I happened to belong to a Toastmasters club that met in a National Cancer Institute building. (NCI is part of NIH. PubMed is also part of NIH through the National Library of Medicine. I once had a library card there). One of the club members was a cancer researcher who specialized in leukemia, and he talked to his coworkers, and that led to some advice about the right treatment.
I hope some of this will be helpful . Please let us know what you find out.
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1 Reactionmy husband,by training, is a PhD inorganic chemist. He was a researcher and continues to be. Your language construct sounds very much like him.
We are very aware that it could be worse. What we are trying to do is to abbreviate this disease in someway if possible. That is why we are searching for a trial or information about treatments at the smouldering multiple myeloma phase.
Our thinking is why wait until it is a full-blown case if you could possibly stop it before it becomes a full-blown case of multiple myeloma
In reply to fluffy56:
What type of scientist is your husband? Does he know about pubmed.gov?
I would start looking for a cancer center where there are people who have expertise in the illness you describe.
What do doctors who treat your husband's condition say about treating immediately or watching and waiting? What is the basis for their recommendations?
Regarding the emotional component of all this, I suggest that a cool, calm, rational, and active approach would yield the best results. Emotional regulation can be difficult, but it is possible.
It could be worse. It could be a lot worse. Contrast being told that the approach will be watch and wait versus being told after a lab test that you have an emergency appointment with an oncologist for the next morning, and then hearing that without immediate chemotherapy you would be dead in three weeks. From that point of view, watching and waiting doesn't seem so bad.
Does your husband have any friends who could help him with some investigation of what the options are? You know what they say about lawyers. A lawyer who represents himself in court has a fool for a lawyer.
I still recommend that your husband be active in finding out as much as he can about treatment options, but I also recommend talking to people who have expertise in the field and who have already thought about the questions he has raised.
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1 ReactionYou truly are new to this diagnosis, and of course your responses are fresh. I am going to tell you something about myself but it is not for you to find a comparison. My response to getting cancer had not one element of fear. I tell you that because everything I have learned about dealing with myeloma, has shown me that living happily with that diagnosis is very possible. I am quite the odd duck in having that response, but it has served me well as you can imagine. I went from MGUS to smoldering myeloma in less than 2 years. It will be 20 years ago next October! I was on watch and wait until 2016 when it was determined that I needed to start treatment. Now this is the piece I want you and your husband to consider. If I had spent those years worrying instead of finding a way to maintain a good quality life, what would that have looked like? When you guys have had stressful events, can you say how you dealt with them? Because you did get through successfully. And you can do it again. Would you like to find a way to enjoy life while keeping myeloma on a back burner? It is possible and I would like to help you do that. In fact I am doing exactly that again because I have been on watch and wait again for the last couple years as my numbers increase, but I understand what is happening, and know what I need to do. Can you think what I may be able to do to help you cope and get to a better place with this diagnosis?
Nancy
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3 Reactionshe was officially diagnosed two months ago in the San Francisco Bay area. Thank you for responding.