Waldenstrom Macroglobulinemia

By Lawrencef

1 min read

I was definitively diagnosed with WM in December 2020. I was having progressively worse bloodwork with my GP. It took approximately two years and bone marrow biopsy to conclude that I had WM.

Starting treatment

I started on infusion chemotherapy called Rituxan that my body couldn't tolerate. I was given steroids and other meds to alleviate the negative effects of the medication. No such luck. After two tries, we gave up and started on an oral pill called imbruvica. I was on it for approximately two months and I was getting heart palpitations and a severe rash. My oncologist suggested that I take a two-week pause and I was prescribed prednisone.

Withdrawal

When push came to shove, I went through something called imbruvica withdrawal.
Symptoms were irregular heartbeats, dizziness upon standing, high fever, loss of appetite, and extreme fatigue. As soon as I was put back on the medication, the withdrawal symptoms disappeared. Went to another oncologist who had me try a lower dose and then another even lower dose.

She had me stop the imbruvica and I went through the exact same withdrawal. I saw her a couple of times after that and she wanted to put me back on the same medication again!

I told her that I wasn't interested in going back to it of I have to come off it again.

Finding a good oncologist

Fast forward and I did some research and found an MD that has experience in my type of cancer in PA. Went through a battery of blood work and was told that I should be on a watch and wait for my cancer, even though its stage 4. WM only affects 5 out of a million and was lucky enough to find a support group that I belong to.

My advice is to find an oncology specialist if it fits your type of cancer.

Make sure that you are comfortable with the entire communication process with your MD and team. A second or third opinion is not going to hurt anyone's feelings. It's your health.

Larry

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KimofGreenhills Member
Larry, I too have Waldenstroms Macroglobulinemia. Diagnosed Nov of 2017 after my DX of Non Hodgkins Lymphoma 2 weeks before. That got me the Rituxan as well. I tolerated that pretty well and went into remission about 8 months later. I continued with every 3 months blood work and my numbers looked good for about a year. then I had 2 heart attacks within 24 hours (in October of 2019)which ended up with me having 2 stents and a DX of CHF. but i wasn't healing. My bruising looked like i had been run over, i was so exhausted it was unbearable, I had bleeding in my lung etc etc. They kept me in the hospital. finally my oncologists partner came in and handed me his card with AMYLOIDOSIS written on the back. He told me to NOT google it because it might scare me and I wouldn't understand it that I needed to see my Primary <a href='http://oncologist.So' target='_blank' rel='noopener noreferrer ugc'>oncologist.So</a> of course I googled it and YES I was scared to death. I tthen was told I needed to see a local oncologist that knew all about Amy. I wasn't able to get the biopsy done for 4 months (February of 2020)because of my heart!!! The biopsy was sent to Mayo Clinic for confirmation. Yep I have AL Primary Amyloidosis. Very rare again. Not sure if it came from WM. This Amy gave me Peripheral Neuropathy (feet and legs) which gave me Drop Foot, now in BOTH feet. I now wear braces to help me stand and walk some. Im mostly in a wheelchair tho ( I am afraid of falling ) The fatigue I feel from all of this is unreal and unexplainable. But to top it off it has affected my bladder which no longer works. I had a bladder stimulator put in in January of 2021 and it still is trying to get my brain and my nerve to communicate. I just found out Monday that the Amy is in the fatty tissues surrounding my eyeballs. Oh Boy am I happy about this news. My WM Igm's keep getting higher, my Amy is everywhere now and my NHL is killing my neck. I am currently on Bendamustine and Rituximab which takes 2 days of infusion but only once every 28 days. After this infusion I am so exhausted I could sleep 48 hours straight if they would let me. What exhausted me even more was that for almost all of 2020 I had only a few people that I could see because of Covid. I never felt so alone. But by the Grace of God i have coped and I continue on. Thanks for sharing your story. I dont feel so alone now!
KimofGreenhills Member
Larry I forgot to mention the DX of Multiple Myeloma...I'm tired just thinking about all of it. My list goes on...at some point I started to see the humor in all of it and was able to look at it in a different light.
Lawrencef Member
I've reached the point where it is what it is and hope for the best
1. Amanda Brunson Moderator & Contributor
 🫂🫂🫂I’m sending positive vibes and joy your way!✨
Yolanda Brunson-Sarrabo Moderator & Contributor
Yes, Larry, I couldn't agree with you more, finding a qualified physician is a key that specializes in that form of ailment! Unfortunately for many, it can be a trial and error in the best and ultimate route. I'm glad you did your research and found the best care in your area.
Lawrencef Member
It took a bit of time, trial and error, but I'm comfortable with my choices
Birdsam Member
Larry and Kim, I was just diagnosed with waldenstroms about 1 month ago. Started with a diagnosis of MGUS but when I went to the hemotologist and after all of his labs, he told me I had Waldenstroms. Fortunately, I am still feeling pretty good. I was very exhausted, but my B-12 was also low so have been getting b-12 shots. That's helped some with the fatigue. When first caught my IgM was at 3,757. When did labs at hemotologist it was at 4,006. He told me no treatment until IgM reaches at least 5,000. I repeat labs in 3 months, January 2022, to be able to see the progression. They will also do the test to see how thick my blood is. (So many new words and terminology) I'm curious as to what your IgM levels were at when you started treatment? I have pvc's (premature ventricular contractions- premature heart beat) so I'm concerned about the thickening of the blood with Waldenstroms. I see my cardiologist in December and see what she says. I am in central Florida and there is a Mayo clinic in Jacksonville, Florida so I feel like I at least have good resources close by. I just want to know someone else who has this and what you've went through with yours. Thank you for your help Rose
1. Dennis Golden Moderator
 <inline-mention username="Amanda Brunson" user-id="4145474"/> I guess some folks can have nasty reactions requiring a medical response beyond what is available at an infusion center … fortunately I did not 👍
2. CookiesMom Member
 <inline-mention username="Birdsam" user-id="4504398"/> Hi all, I started the WM journey with active NHL, WM in April, 2018. I had rituxan and Hycela sub-q injections and am on imbruvica 420 mgs daily since 7/2018. It's working well for me. Side effects are tolerable and few. I see my hema/onc. quarterly for drug followups because he is watchful of a-fib possibility. Have only had 1st naive treatments with no issues. And imbruvica is keeping things corralled like it is supposed to do. Looking forward to warmer days so I can get outside and starting a walking/biking routine (got to learn to ride again, haven't been on a bike in 14 years). IGMs were 2950 with few large proteins for first labs after transfusions 2 weeks before. I figure based on symtoms and super low hgb, I was most likely mid 3,000s if they had done an IGM lab when I went into ER for pneumonia and realized I was severely anemic and had transfusions pre-WM labs tho. If you get a chance, go online to the International Waldenstrams Macroglobulinemia Foundastion site (<a href='http://IWMF.com' target='_blank' rel='noopener noreferrer ugc'>IWMF.com</a>) and look around. Videos, written, pamphlets and lots of information to guide you along the journey. And, if you want, you can join a closed online email forum that offers lots of information, support and sharing as well. Also there is a closed facebook group too. I live in the Finger Lakes in Western New York state not far from University of Rochester & Wilmot Cancer Center. I go to a clinic that is associated. My Dr. has other patients and did residency under a lymphoma specialist that has many years working with WM through Sarasota Mayo, FL and came to work at U of R in Rochester, NY. So got really lucky with that.
Dennis Golden Moderator
We have all experienced the joys of MDs who “hit the nail not quite not on the head” So agree on the need to find the right MD who specifically diagnoses and treats whatever you are dealing with. Key I believe is to be willing to make changes if you are not comfortable with your Doc. Dennis(blood-cancer.com TEAM).

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