Waldenström's Macroglobulinemia

Posted by Yellersam @yellersam, Jan 31, 2012

Hi, my dad has recently been diagnosed with WM. First things first; he told me 90% of his bone marrow was infected with the cancer. How severe would that be compared to other patients? He also falls into the high risk category. Has anybody here with WM fall into the high risk category as well?
Much thanks to all!

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

@michaelah

I was diagnosed in 2022 with WM w/ IgM neuropathy. 12 Rituxan infusions latter neuropathy not better. Further tests show anti-MAG > 70000 for which I am taking steroids. My latest symptom is tingling and numbness in my face that is symmetrical. What the heck is that? I thought IgM anti MAG are peripheral neuropathies.

Jump to this post

The neuropathy is really getting to me, too. It's not in my face though. Mostly feet, hands, and one arm. Hope it gets better for you, Michaelah.

REPLY
@champ9810

I’m my first Rituximab infusion as well. I’m hoping for no or minimal side effects. Thanks for your update and all the best with the rest of yours as well.

Jump to this post

Hope all went well.

REPLY

I’ve completed four rounds of Rituxan; One each week for four weeks. The first infusion went well until the very end when I developed Rodders, a shaking sensation. The second one they administered at a slower rate, and I had no problems and the third and fourth was at a much higher rate 90 minutes rather than four hours, and I had no problems there either. Thanks for the follow up. Your interest is appreciated.

REPLY

I was diagnosed with WM in 2014. I’ve experienced four different treatments and want you all to know there is hope. I may have missed it but, may I ask what puts you “in the high risk category?”

REPLY
@squidlee

The neuropathy is really getting to me, too. It's not in my face though. Mostly feet, hands, and one arm. Hope it gets better for you, Michaelah.

Jump to this post

I am sorry to read of your PN symptoms. Being an I.W.M.F, MN/WI support group co-leader, I strongly recommend that you search on the IWMF web site for PN? Also, if you have not already consulted one of the WM specialists, the IWMF can assist you with that. If you have further questions regarding the IWMF, I will be happy to assist you. There are fewer than 1500 WM patients diagnosed in the US and we are all different. Most oncologists/hematologists have few WM patients to draw knowledge from. The worldwide WM specialists not only have multiple patients but have other WM specialists in their clinic to consult with – i.e. Mayo Clinic, Rochester.

REPLY
@ejrquast

I am sorry to read of your PN symptoms. Being an I.W.M.F, MN/WI support group co-leader, I strongly recommend that you search on the IWMF web site for PN? Also, if you have not already consulted one of the WM specialists, the IWMF can assist you with that. If you have further questions regarding the IWMF, I will be happy to assist you. There are fewer than 1500 WM patients diagnosed in the US and we are all different. Most oncologists/hematologists have few WM patients to draw knowledge from. The worldwide WM specialists not only have multiple patients but have other WM specialists in their clinic to consult with – i.e. Mayo Clinic, Rochester.

Jump to this post

Thank you. I do appreciate my oncologist/hematologist and find him very knowledgeable, but it would be helpful to go to Henry Mayo for a second opinion. I just decided that there are a few things I really want to do first. I am enjoying a break from doctor's visits. I am walking and preparing for a few trips. Afterwards, I will call and make an appointment. Appreciate your response!

REPLY
@squidlee

Thank you. I do appreciate my oncologist/hematologist and find him very knowledgeable, but it would be helpful to go to Henry Mayo for a second opinion. I just decided that there are a few things I really want to do first. I am enjoying a break from doctor's visits. I am walking and preparing for a few trips. Afterwards, I will call and make an appointment. Appreciate your response!

Jump to this post

Enjoy your trip!

REPLY
@champ9810

I’m my first Rituximab infusion as well. I’m hoping for no or minimal side effects. Thanks for your update and all the best with the rest of yours as well.

Jump to this post

Best of luck🙏let us know how it goes.

REPLY
@colleenyoung

Welcome to Connect, @dcp45.
I’d like to introduce you to @azjulie whose husband has Waldenstrom’s Macroglobulinemia. You may also be interested in this discussion thread.
– Waldenstroms and amyloidosis http://mayocl.in/2dOVhlz

DCP – is this a recent diagnosis for you? We look forward to getting to know you.

Jump to this post

Yes, my husband, I am looking for a support group. He was diagnosed about six months ago (70) with no other symptoms except fatigue. Blood test were not too worrisome but the recent one showe a spike on one of the results and we have not heard back from the Doctor yet. I am not sure what the next steps will be, the Doctor said no treatment until you have to but that doesn't tell me much or what to expect. He is being treated for HBP and Type 2 Diabetes. High cholestrol also for years but just recently went off the statin because the total number has gotten way too low.

REPLY
@drwill

Hi, my name is Patrick and I was just diagnosed with Waldenström macroglobulinemia last week after the reading of my bone biopsy. I was also diagnosed with a blood disorder called, Cryoglobulinemia, it cause my blood to become thick and could cause a stroke.

Starting July 10th…The treatment will be six cycles of Bendamustine and Rituximab. I know each person will respond differently, however; can anyone give me an idea of what I can expect?

Thanks 🙏🏾
Patrick

Jump to this post

I was diagnosed 2 years ago. Lost 30 lbs, night sweats, etc. Treatment recommended same as you but got second opinion, now take 3 Brukinsa pills daily. My IgG and IgM improved, normal weight. Feel well.

REPLY
Please sign in or register to post a reply.