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Waldenstrom macroglobulinemia (WM) 3 years: Might I be in remission?

Posted by zeedee1 @zeedee1, May 16 11:16am

I think
My dr finally found the right formula. Brukinsa, Ruxience infusions, omigam and dexamethodone. Igms finally going down. Iga non existent but other immunoglobulins much better. Does this mean I am going into remission? I see him next week but feeling a lot better🤞

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carevans6 | @carevans6 | Jun 1 12:09pm
In reply to @dcuste "It's good to know I'm not alone in this IgM MGUS journey. I have so many..." + (show)
Profile picture for dcuste @dcuste

It's good to know I'm not alone in this IgM MGUS journey. I have so many questions. My impression is my Oncologist/Hematologist is just using the HMO playbook. Fortunately, she is willing to play along with my requests for tests like LDH & MRI. My IgG levels are low, Free light chains seem normal. I don't know if my IgM is Kappa or Lambda and I don't know if it makes a difference anyway.
The first time we talked, she seemed to promote a BMB, but I declined at the time mainly because at that time I was still hoping this whole situation would progress very slowly. Unfortunately, my IgM levels have been rising exponentially. In a few months, I'll get all the testing done again including the BMB and then put the results into the Dana Farber calculator and know which Risk Group I'm in.
Depending how those tests go, I may then ask for FISH (MYD88 L265P), maybe Flow Cytometry to identify clonal markers (CD19, CD20, CD5, CD10, CD38, CD138, etc.) on abnormal B-cells/plasma cells.
I don't think she will be happy about doing more tests. The MRI I talked her into, didn't find any lesions but did find an unrelated AVN condition affecting my hips and that resulted being assigned to an orthopedic surgeon. Who knows what these tests will find.
I'll let you know how my testing goes. Let me know if you have any questions and how your journey progresses.

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I’m not sure you need all these tests. The MDY88 is over 90 % positive for WM with Congo Red by histology. I later asked for the CXCR testing as the outcomes aren’t as good. I take IVIGG infusions for the low IGG levels to boost the immune system. You may want to ask for the Fat Pad test which further confirms WM.

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Lori, Volunteer Mentor | @loribmt | Jun 1 2:08pm
In reply to @carevans6 "I haven’t lost any weight. I gained weight. I am on Brukinsa and jt is known..." + (show)
Profile picture for carevans6 @carevans6

I haven’t lost any weight. I gained weight. I am on Brukinsa and jt is known for weight gain. Just my luck.

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I know what you mean, weight gain from some of our meds isn’t a favorite side effect. However, staying alive has its merits! 😅 Glad to hear the Brukinsa is having a favorable result in lowering your IgM levels.
By the way, welcome to Connect. How long ago were you diagnosed with WM?

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dcuste | @dcuste | Jun 1 2:24pm
In reply to @carevans6 "I’m not sure you need all these tests. The MDY88 is over 90 % positive for..." + (show)
Profile picture for carevans6 @carevans6

I’m not sure you need all these tests. The MDY88 is over 90 % positive for WM with Congo Red by histology. I later asked for the CXCR testing as the outcomes aren’t as good. I take IVIGG infusions for the low IGG levels to boost the immune system. You may want to ask for the Fat Pad test which further confirms WM.

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Thanks for the suggestions. My IgG levels for the first two years were in the high 600 mg/dl levels, just below the normal of 700. The last year they have been low 600 to now the high 500 level. Being asymptomatic, it doesn't appear that I would qualify for IVIGG. If I start getting neuropathy or infections, I'll definitely inquirer about that option or maybe SCIG seems like a better option. In the mean time, I guess I'll try to avoid exposure to any infectious diseases out there.

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helenpater7 | @helenpater7 | Aug 19 3:40pm
In reply to @zeedee1 "Do you have symptoms. They put me on meds then infusions because of all the awful..." + (show)
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Do you have symptoms. They put me on meds then infusions because of all the awful symptoms even more than the bad numbers.

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What are some of the symptoms to watch for? My Dad had Waldenstroms. I understand it can be inherited. I am in pretty good health.

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helenpater7 | @helenpater7 | Aug 19 3:41pm
In reply to @helenpater7 "What are some of the symptoms to watch for? My Dad had Waldenstroms. I understand it..." + (show)
Profile picture for helenpater7 @helenpater7

What are some of the symptoms to watch for? My Dad had Waldenstroms. I understand it can be inherited. I am in pretty good health.

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Awful symptoms? What were they?

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helenpater7 | @helenpater7 | Aug 19 3:48pm

My Dad began to stop eating the choc shakes brought to him. The disease is indolent slow moving and we were told he would die of something else first.

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suerich1989 | @suerich1989 | Aug 19 4:09pm

Hi, I was diagnosed w WM in 2022. Rituxan treatments back then and doing well overall. I also wonder if there’s such a thing as remission with this disease? I was treated in NJ at MD Anderson-Cooper. I wonder if anyone else was? I also recently went for a 2nd opinion at a WM specialist at Penn (per the IWMF directory) Unfortunately through blood titer I found out I’m not immune to measles and unable to get the MMR vaccine because it’s a live attenuated shot. I am in the process of building a medical support team and plan in the event I’m exposed. This would involve receiving IVIG very quickly. It would be helpful if anyone has input on anything related to this. Whether seeing docs in other specialties or any other knowledge. I feel like I’m kinda reinventing the wheel in a way as measles was all but gone and most folks are immune. Thanks in advance!

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zeedee1 | @zeedee1 | Aug 19 7:04pm

Same issues.. started octigam to build immune system. Not even a sniffle since I’ve been in it.

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suerich1989 | @suerich1989 | Aug 20 3:53pm

May I ask how you got insurance to cover it? Did you have to see other specialists in addition to your oncologist? Thank you!

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zeedee1 | @zeedee1 | Aug 20 5:28pm

Just my oncologist. He is with Institute of innovation and oncology. I am on Medicare and after I paid my full deductible and co pays it was covered.

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