Waldenström's Macroglobulinemia

Hello,
Thinking a Waldonstoms diagnosis is eminent. Have IgA deficiency and Selective IgG 2&3 deficiency and an IgM spike- have been getting ver sick with upper Respiratory Illness, asthma, gastric disease lately. I turn 60 this year and have had MGUS monitored since 2014 . Has anyone been storing their own Stem cells, received them or heard about this therapy?

I am sorry to read you are now experiencing WM symptoms. I recommend that you contact the International Waldenstrom’s Macroglobulinemia Foundation, IWMF, at https://iwmf.com/
I was diagnosed in 2014 and am thankful for all the excellent educational materials and support through the IWMF.
I personally have not experienced stem cell collection but have a member in our MN & WI support group with personal experience. If you search for the IWMF, link above, you will see “Patients and Caregivers”. If you click on that, you will see all the support and educational materials available including the LIFELINE.
If you have questions or need direction, I would be most happy to assist.
The great news is, since 2014, WM treatments and research has greatly improved. With the IWMF, you are never alone with our rare blood cancer.

Thank you so much for the mail and vote of support! I have been feeling alone now for a very long time. So glad I found this forum. The symptomology that had led me to this point to seek help has been daunting to say the least. Thanks again for saying hello! Looking forward to some long nights of reading

This is my first time on this site. I was recently diagnosed with WM also . Sounds like i am close to where you are but my Dr suggested i start chemo. can i ask what your igm numbers are being you are not doing chemo yet. Thanks

We WMers know and understand from personal experience that one patient’s levels may mean we are symptomatic and need treatment while another patient may have higher levels but asymptomatic and not need treatment. What symptoms are you experiencing along with concerning levels? We truly are all different and I relate to how there is so much to process. You are not alone.

I am just over 1000 . from what i researched that is not terrible . I do have tingling and some stinging in my feet and some tingling in my fingers as well. i also get light headed when i go from sitting to standing up .I am new to this site and thought i would reach out and maybe get some answers as i am having a hard time finding some .I do not know anyone personally that has this that i can talk to . Thanks for your interest!!!

I don't have very much to add to the helpful responses already in this group chat, other than to express my concern and caring. "Watching and waiting" can be stressful, as it encourages scrutiny of the slightest physical change. The IWMF mentioned above is exceptionally helpful in this regard, as it offers high-quality material of all sorts. Its resources, including a newsletter with articles from top practitioners and scientists, can help with one's equilibrium. If you join you will receive a great collection of literature, notices of other resources, and fellowship with fellow WMers. I wish you the best.

Hello I’m Ben I’m 36 I live in Australia I was diagnosed in 2021 I had rash/sores on my lower legs and local doctor prescribed penicillin for 7 months before going to another doctor who done blood tests and swabbed me thankfully I feel I’m getting lied to I was stage 4 upon diagnosis and had plasma exchange 3 times to bring it down to get a proper reading I have severe pain in my stomach area and there not showing me my X-rays but I had a lot of growths and now there held back from me

Thank you for reaching out for help. No doubt you are overwhelmed right now. Mayo Clinic has several WM specialists. WM is rare and most doctors are not familiar with symptoms. I would recommend contacting and joining the I.W.M.F. (International Waldenstrom’s Macroglobulinemia Foundation) for excellent and accurate educational and patient support. https://iwmf.com. I would also suggest getting in touch with our Australian SG Leader -
Australia WMozzies(link is external) David Young
Phone: +0428 187 025
Email: david@davidyoung.com.au
He can connect you with WM doctors and will be an excellent source of support. I will be happy to help in any way I can. I happen to be an IWMF MInnesota and WIsconsin support group leader.

My mother-in-law was diagnosed with Waldenstrom's in 1981. She was living here in Arizona and Toledo, Ohio (summers). After lots of trials and tribulations with uncomfortable bouts of chemo, we lucked out in Toledo. An oncologist (who became her regular doctor) learned of a trial in Seattle for Waldenstrom's. A doctor (I believe affiliated with the U of Washington) had done research on Waldenstrom's because it was so rare and was having great success with the chemotherapy. It consisted of two or three original cancer drugs. This was about 1983. He started my mother-in-law on it (along with dexamethasone for side effects)) and she went into permanent remission. She went off chemo after about two years. She died 20 years later of something totally unrelated.

You might check the University of Washington and see where they are with Waldenstrom's. Our experience was 40 years ago. They saved my mother-in-law's life.