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.

gparis | @gparis | Dec 4, 2023

In reply to @fyrizonly "Yes, my husband, I am looking for a support group. He was diagnosed about six months..." + (show)

I am sorry to hear about your husband's diagnosis and wish him the best. If you are looking for an amazing support group go to Facebooks Waldenstrom Macroglobulinemia Support Group. You will have to submit an application because it is private as are all the postings, they only allow family members, caregivers, and WM patients to join. It has 6300 WM members around the world and you will not find a more supportive, caring and knowledgeable group of folks than this WM community. You will feel right at home there, I love having it available, I can't say enough good things about it and I wish I knew about it when I was diagnosed in 2017. You can also go to the IWMF and LLS websites as well for support and info.

almondman2015 | @almondman2015 | Nov 26, 2023

Please contact the IWMF organization. It has an excellent magazine which provides information and articles from doctors and access to seminars. It can also link you to support groups which will enable you ask questions and have discussions with other patients.

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2023

In reply to @fyrizonly "Yes, my husband, I am looking for a support group. He was diagnosed about six months..." + (show)

Hi @fyrizonly, I can understand the unsettling feeling of not knowing what to expect, especially when your husband has WM as well as other issues like high blood pressure and type 2 diabetes. I’m tagging other members living with Waldenström's Macroglobulinemia like @ejrquast @psue4 @squidlee and others, who can help answer any questions you may have and share their experiences.

Is your husband seeing a hematologist?

sagenest | @sagenest | Nov 22, 2023

I have not had any symptoms so far. It is good news yo me that the pills work for you.

usccrowley | @usccrowley | Nov 21, 2023

In reply to @drwill "Hi, my name is Patrick and I was just diagnosed with Waldenström macroglobulinemia last week after..." + (show)

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.

fyrizonly | @fyrizonly | Nov 21, 2023

In reply to @colleenyoung "Welcome to Connect, @dcp45. I'd like to introduce you to @azjulie whose husband has Waldenstrom's Macroglobulinemia...." + (show)

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.

psue4 | @psue4 | Sep 5, 2023

In reply to @champ9810 "I’m my first Rituximab infusion as well. I’m hoping for no or minimal side effects. Thanks..." + (show)

Best of luck🙏let us know how it goes.

ejrquast | @ejrquast | Sep 4, 2023

In reply to @squidlee "Thank you. I do appreciate my oncologist/hematologist and find him very knowledgeable, but it would be..." + (show)

Enjoy your trip!

squidlee | @squidlee | Sep 4, 2023

In reply to @ejrquast "I am sorry to read of your PN symptoms. Being an I.W.M.F, MN/WI support group co-leader,..." + (show)

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!

ejrquast | @ejrquast | Sep 4, 2023

In reply to @squidlee "The neuropathy is really getting to me, too. It's not in my face though. Mostly feet,..." + (show)

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.

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