Waldenstroms and amyloidosis

Posted by azjulie @azjulie, Sep 8, 2016

Diagnosed with the Waldenstroms a year ago, just today with amyloidosis. Will start treatment next week. Anyone have these or know anything?

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

ejrquast | @ejrquast | Mar 22, 2022

I apologize for not responding today but I will have the specialist info for you tomorrow. The following is a link for IWMF’s Newly Diagnosed to get you started: https://iwmf.com/newly-diagnosed-wm/
Please know that we are here to support you. Eunice

ejrquast | @ejrquast | Mar 23, 2022

The following link is an IWMF physician directory for WM specialists. Please note that there are two listed for TX. I am communicating with our IWMF office to see if I can also find you a young WM patient who would be willing to communicate with you. Thank you again for your reaching out for support.

ejrquast | @ejrquast | Mar 23, 2022

So sorry. I forgot to include the IWMF Physician’s List for your reference. https://iwmf.com/wp-content/uploads/2022/01/IWMF_PHYSICIANS_DIRECTORY.pdf

maya1967 | @maya1967 | Jun 1, 2023

Mi madre de 85 años fue diagnosticada y empezó el tratamiento Rituximab...mayo 4; no tengo mayor información sobre cómo cuidarla....
Agradezco si alguien me guía.

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Colleen Young, Connect Director | @colleenyoung | Jun 9, 2023

In reply to @maya1967 "Mi madre de 85 años fue diagnosticada y empezó el tratamiento Rituximab...mayo 4; no tengo mayor..." + (show)

@maya1967, how is your mother doing on the Rituximab treatment? How are you?

suze54 | @suze54 | Jun 16, 2023

My Dad had Waldenstroms Macroglobulinemia (rarer than amyloidosis) for 10 years from age 63 to 73. He took oral medication each year, but missed the last year, and the decline was obvious. He had blood transfusions and plasma exchange, but nothing helped. And yes my father did pass away, but this was twenty-three years ago. Hopefully there's more superior research since then.

It is not inherited, and most infected people have no history of disorder in their family. The condition usually arises from genetic changes in blood cells that's acquired during a person's lifetime.

mrgreentea | @mrgreentea | Feb 25 9:06am

In reply to @loribmt "Hi, my goodness, your husband has a lot going on right now and you too, as..." + (show)

@loribmt

Hi, my goodness, your husband has a lot going on right now and you too, as the caregiver. My heart goes out to you as this has to be a dreadfully stressful time. The threat of the Covid virus sure adds another dimension to the situation. There are so many of us on immunosuppressants in the same boat.

It’s understandable that you’re upset over the prospect of his immune system being compromised by the reduction of his B-cells with the Rituxan infusions.
As you learned, Rituximab(Rituxan) inhibits B-Cell production, which, given your husband’s condition, he’d certainly want to do. It’s meant to slow the progression of the blood cancer. Waldenstrom and marginal zone lymphoma are lymphoid side cancers producing too many B cells. That in turn churns out antibody proteins in large excess creating problems throughout the rest of the body. Additionally the over producing B cells can crowd out the other components of the bone marrow~the Myeloid side resulting in ever decreasing red blood cell production, neutrophils and platelets, etc..

In a large nutshell, if the B Cells, which are allowed to replicate unchecked, with time they and the products they produce will eventually crowd out everything in the bone marrow. The marrow will lose the ability to make T cells, neutrophils, macrophages, red blood cells and platelets. From my understanding Rituximab only inhibits B cell production. So the immune cells produced by the myelocytes in the marrow would still be producing neutrophils, macrophages, and the lymphoid side would still be producing T cells so there is a good share of immune system functioning and working to some degree.

It would seem to me the risk for complications of the lymphoma/Waldenstrom greatly outweigh the risk from possibly contracting covid. The Rituximab may be necessary if not essential to the treatment of your husband blood cancer.

Regarding the covid vaccination and flu vaccine; Even being on the immunosuppressants I was encouraged to receive the flu vaccine and the both Pfizer Covid shots by my transplant team. A 3rd vaccination was not recommended at this time. While there’s no way to test the effectiveness, it’s the hope that the vaccines will still form a recognizable immune response. There is more to our immune system than just the B cells.

With the diseases your husband has, while his immune system is compromised by the need to treat the more serious condition, the comforting part is he can take direct action himself to protect his health during this time of vulnerability, not only to the Covid-19 but also other viruses and communicable diseases. Continuing to mask in public areas or with unvaccinated people, frequent hand washing, not touching eyes or face, avoiding crowds, distance when talking, etc., are simple yet effective ways to diminish the possibility of getting ill.
I live this way daily, even without the threat of Covid. It’s became a way of life since my bone marrow transplant 2 years ago and hasn’t impacted my ability to enjoy a normal lifestyle.

After writing this, I realized you’d replied about having the 3rd opinion and waiting on further treatment. Did the latest doctor have any recommendations regarding a booster vaccine?

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Hi @loribmt

Wonderful technical explanation! Did you school yourself AFTER you were diagnosed? Do you have any helpful pointers to where one might get this level of education on Leukemia - short of becoming an MD and then a cancer specialist? I'd like to shine a bright light on this blackbox.

Paul

Lori, Volunteer Mentor | @loribmt | Feb 25 1:55pm

In reply to @mrgreentea "Hi @loribmt Wonderful technical explanation! Did you school yourself AFTER you were diagnosed? Do you have..." + (show)

@mrgreentea. Hi Paul. You caught me a little off guard with your comment this morning. It made my day. So I just had to share it with my husband. His reply regarding my knowledge of leukemia and technical explanations, “Even a blind squirrel finds a nut from time to time.” 😂

To answer your question, yes, most of my knowledge of blood cancers and conditions came from total immersion feet first into my personal experience with acute myeloid leukemia and the process of the bone marrow transplant and treatments/chemo/meds for both issues over the past 5 years. I also lucked out with a brilliant transplant doctor who enjoys answering questions. My husband and I have learned so much from our almost daily visits with either him or his staff over the course of 4 months right after transplant and our subsequent followup visits.

But that also whetted my appetite to learn more. I’m always researching for myself and members in Connect. I’ve lived with some of the same symptoms, used the same chemotherapy and treatments as other blood cancer patients so it’s easy to relate to people.

Our blood/bone marrow/immune systems are incredibly complex!! Nothing is black/white/written in stone…or blood. Every person is different and what works for one person in treatment doesn’t automatically work for another. I have such an enormous respect for hematologist oncologists and the mysteries they have to unravel! The minute details of each subtype of blood cancers or conditions are mind boggling.

Quite a bit of my information comes from reading research papers on Scholar.google.com and medical sources such as cancer journals, ONA (oncology nurse advisor), Cancer Therapy Advisor-daily updates.

If I remember correctly, you’re still waiting for a firm diagnosis with a potential blood condition. When you get that information it will be easier to zero in on subject matter without being swept off into a rabbit hole. It’s so easy to start reading about things that aren’t relevant, which can be real anxiety producers!
Let me know when you find out and then we can go from there. ☺️

mrgreentea | @mrgreentea | Apr 3 5:05pm

Finally 🙂 🙁 I have a diagnosis from a Mayo CLL doc. He said I have something that "acts like CLL". And, because of my unmutated IGHV and -17p, that I am in a higher risk group. His recommendation is to join his new Mayo trial looking at Acalabrutinib (or A+O) for naive patients.

It's certainly not cut & dry. My Fairview doc is not convinced "that all of the clones represent CLL since by morphology, at least the lymph node looked more like a B-cell lymphoma with plasmacytic differentiation (usually either Waldenstrom's or marginal zone lymphoma) and you have the elevated IgM which is not often seen with CLL either." However, she does think that A or A+O would still be a good course.

I will go over the options with the Mayo doc mid-April and decide how to proceed.

If you have any thoughts/wisdom to share, please do!

Colleen Young, Connect Director | @colleenyoung | Apr 6 6:12pm

In reply to @mrgreentea "Finally :-) :-( I have a diagnosis from a Mayo CLL doc. He said I have..." + (show)

@mrgreentea, it sounds like another piece of the puzzle has been placed, but the picture remains incomplete. Hence the smile and frown emoji. It is good news that there is a clinical trial that may be right for your diagnosis. While the option is available, it is your choice whether it is right for you. Ask questions.

You might appreciate this information, including videos from Mayo Clinic about participating in clinical trials, terms you'll learn, and making the decision:
- About Clinic Trials https://www.mayo.edu/research/clinical-trials/about-clinical-studies
- Deciding to take part https://www.mayo.edu/research/clinical-trials/deciding-to-volunteer

I look forward to hearing what you learn at your upcoming appointment. Please share.

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