Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait

Posted by lfevold @lfevold, Oct 22, 2020

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.

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

cathy56 | @cathy56 | Nov 30, 2023

In reply to @colleenyoung "Hi @lfevold, I'd like to add my welcome and also bring @beepoop @1nan @pro @lkzvlk @gingerw..." + (show)

I 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.

Ginger, Volunteer Mentor | @gingerw | Nov 30, 2023

In reply to @cathy56 "I have been dx MGUS decade ago went to Mayo in FL in 2018. My 24..." + (show)

@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

cathy56 | @cathy56 | Dec 2, 2023

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

cathy56 | @cathy56 | Dec 2, 2023

In reply to @gingerw "@cathy56 Welcome to Mayo Clinic Connect. I see you have been a member here for a..." + (show)

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

Ginger, Volunteer Mentor | @gingerw | Dec 2, 2023

In reply to @cathy56 "Yes my local radiation Oncologist referred me back to Mayo last week as PET scan incorrect..." + (show)

@cathy56 Contact the person you spoke to and confirm the records were received. Ask them their thoughts on what your next should be. It sounds like you have all the documentation showing incorrect procedures/diagnosis. So you may need to start from first step again, which you don't want to do.

As a retired RN, you are in a better position than many, with medical knowledge. This also makes it a burden, knowing the small details. Right?! I hope you will let us know what your contact has to say.

As an aside, the International Myeloma Foundation offers a virtual smoldering myeloma support group, the next one is in January 2024. The patient advocate who facilitates it is a retired oncology nurse from Mayo Clinic [Rochester, MN]. Here is the link to get on the email list: https://www.myeloma.org/smm
Ginger

cathy56 | @cathy56 | Dec 3, 2023

In reply to @gingerw "@cathy56 Contact the person you spoke to and confirm the records were received. Ask them their..." + (show)

I made error it was k1 67 with multiple c + markers that showed not lambda kappa on bone biopsy . But I am not sure if I am advocating for myself correctly but was a great advocate for my patients! I should of made sure my medical records were transferred to different specialties as I think this is were the issues arise and why I was given wrong cancer PET scan 2 months ago and the radiation onc was unaware of fibula cancer Mets dx as he was looking for some plasma type cancer and only scanned knees up! I also want the Quebec Platelet Disorder tested and my advanced NASH !
You see it is too many things at this point ! My only hope is Mayo as I know they care for the patients wellbeing and being a former RN I feel makes my situation worse I feel as I had one specialist tell me “ RNs know enough to be dangerous “ how cruel as I never come off as a professional in med field as in my state of health I am far from medical knowledge as I am not a doctor but a sick patient only wanting answers!
Thank u for your response

Patty, Volunteer Mentor | @pmm | Dec 4, 2023

In reply to @cathy56 "I made error it was k1 67 with multiple c + markers that showed not lambda..." + (show)

@cathy56
I audibly gasped when I read the cruel (and untrue) comment about nurses. I have worked with hundreds of nurses in a hospital setting and wish I had a dollar for every catch they made, often that docs missed. Working in a teaching hospital taught me to trust, but verify.
I’m so sorry this has been such a difficult journey for you.
Be the squeaky wheel. Pleasant but insistent. It will serve you well.
I believe you would be well served to get a Mayo workup. One big advantage is that the various subspecialties have immediate access to one another’s notes. There is less likelihood that important results will be missed.
Best of luck. Wishing you the best possible outcome.
Patty

cathy56 | @cathy56 | Dec 4, 2023

You don’t know the half of the cruelty I have been subjected to!! I am pleasant and never bring up my former profession but it is obviously on my records ! UF Shands oncology who I was referred to had the insensitive remark with no medical documentation to accuse me of being alcoholic due to my abdomen being 45 plus inches as I have NAFLD that has progressed to NASH ! And I could go on and on about these UF Shands so called professionals I have been referred to by my oncologist just to be dismissed! I have been treated like dirty gum to their feet! I don’t understand it and yes I know Mayo will never treat me like a sub human !

cathy56 | @cathy56 | Dec 4, 2023

In reply to @pmm "@cathy56 I audibly gasped when I read the cruel (and untrue) comment about nurses. I have..." + (show)

I just called oncology they are reviewing my oncology records so I should hear back soon ! Finally answers

Patty, Volunteer Mentor | @pmm | Dec 4, 2023

In reply to @cathy56 "I just called oncology they are reviewing my oncology records so I should hear back soon..." + (show)

Yay! You’ve got this.

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