Waldenstroms 3 years

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🤞

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

mrkent | @mrkent | 6 days ago

In reply to @zeedee1 "Forgot about the weight loss.. 25 lbs in 3 years and cold and numb feet and..." + (show)

Thanks for your input, I appreciate it very much . I was diagnosed by VA with bone arrow biopsy aftr they looked at my blood tests . Attributed to Agent Orange exposure in Vietnam and Thailand 0ver 50 yrs ago.

zeedee1 | @zeedee1 | 6 days ago

That is crazy! So sorry!

michaelah | @michaelah | 6 days ago

In reply to @mrkent "What symptoms should I be looking for with Waldenstroms? After three years I am still preety..." + (show)

get a test for anti- mag titers I forget the exact test (chemo-brain) but it's rare but 4% of WM have it, like me. Brukinsa has really helped. So, get the test.

breathernow | @breathernow | 6 days ago

In reply to @mrkent "What symptoms should I be looking for with Waldenstroms? After three years I am still preety..." + (show)

3 yrs diagnosis waldenstrom, I agree with you about navigating the symptoms! Fatigue is my travelling companion

Lori, Volunteer Mentor | @loribmt | 5 days ago

In reply to @breathernow "3 yrs diagnosis waldenstrom, I agree with you about navigating the symptoms! Fatigue is my travelling..." + (show)

Welcome @breathernow. Having a fatigue as your travel companion is a real drag…though there are plenty of opportunities to stop and smell the roses along the way. ☺️ I’ve been there myself, so I’m not making light of the situation. It really is a horrible feeling to be so drained of energy all the time. Unfortunately, blood conditons and fatigue usually go hand in hand.

Connect has several members with Waldenstrom macroglobulinemia (WM). I’ve done a quick search and found quite a few discussions that might be of interest for you. Here’s a link to the menu:
https://connect.mayoclinic.org/search/?search=WM
Are you currently in treatment for your WM?

mrkent | @mrkent | 5 days ago

In reply to @loribmt "Welcome @breathernow. Having a fatigue as your travel companion is a real drag…though there are plenty..." + (show)

Right now just monitoring Lgm levels through blood tests with VA - they suggest treatment when count reaches 5000-6000. Now around 2500.

dcuste | @dcuste | 4 days ago

In reply to @mrkent "Right now just monitoring Lgm levels through blood tests with VA - they suggest treatment when..." + (show)

I'm on a Wait and Watch with IgM MGUS. My IgM are about half of yours. For my next biannual testing, My Oncologist/Hematologist has agreed to get the data to run this risk calculator......
https://awmrisk.com/
Because of the people involved in making the calculator, she thinks it is accurate. She has always assumed the risk categories were not standardized to a specific set of values. I'm thinking she might be wrong and this may be the standard is for IgM MGUS.

kjberend12 | @kjberend12 | 4 days ago

In reply to @breathernow "3 yrs diagnosis waldenstrom, I agree with you about navigating the symptoms! Fatigue is my travelling..." + (show)

I was diagnosed 13 years ago. Only real sympton has been losing 75 pounds without trying..lately numbers are up and horrible neuropathy in my feet.. no treatments yet.and I trust my oncologist implicitly. Hope this sheds some light and hope for some of you.

breathernow | @breathernow | 4 days ago

In reply to @loribmt "Welcome @breathernow. Having a fatigue as your travel companion is a real drag…though there are plenty..." + (show)

Hi Lori, really do appreciate your feedback, you are first person to give me feedback, I am reaching out for first time with my diagnosis, although I was diagnosed 3yrs ago I am told that I have had waldenstrum for 10 yes now, no treatment yet, just being monitored. Mike

breathernow | @breathernow | 4 days ago

In reply to @kjberend12 "I was diagnosed 13 years ago. Only real sympton has been losing 75 pounds without trying..lately..." + (show)

Thanks for your reply, am in similar situation, diagnosed 3yrs ago, was informed that I have had waldenstrum for last 10yrs, no treatment yet, just being monitored, thks for your reply,all the best for you. Mike

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