Waldenstroms and amyloidosis

My understanding of Waldenstroms and amyloidosis is that it is a genetic disease that strikes primarily in people's age in the 60s. My wife developed it at 68. That blood borne disease then compromises the immune system. That then creates a fertile area in the body where other cancers can grow. In my wife's case she had six tumors in her head.Chemo and light radiation helped, but the area behind her head was very aggressive and she passed after 3 months. My paramount concern now is that if it is a genetic disease, how can my my family and well as other family members be tested for it. If they are, what is the best treatment for my family. The Waldenstrom Foundation may also have useful information there about this insidious disease. Not to upset anyone, but I was told Waldenstrom is an incurable disease. I believe if we garner our families support to battle back this disease, we can then have a cure which is our ultimate goal.

@jproctor Welcome to Mayo Clinic Connect. Have you been diagnosed with Waldenstroms? There are several discussions within this group that mention Waldenstrom's.
Ginger

My husband has been diagnosed. There are only a few mentions of WM on this site. I’ve checked most.

My husband has been diagnosed. There are only a few mentions of WM on this site. I’ve checked most.

Welcome to Mayo Connect. I was diagnosed with WM in 2014. I am an IWMF (International Waldenstrom’s Macroglobulinemia Foundation) MN and WI Support Group Co-Leader. Since WM is so rare, most hematologist/Oncologists cannot possibly understand everything about WM let alone a second diagnosis of Amyloidosis. If you are not able to get a second opinion from one of the specialists, I suggest having your local specialist consult a Mayo specialist.
With WM, there are two mutations, found during a bone marrow biopsy. When treatment is needed, the MYD88 and CXCR4 mutations will assist the specialists in determining the best WM treatment for you. Mayo has WM specialists who also specialize in Amyloidosis.
EJ in WIsconsin

My husband has been diagnosed with cardiac WTTR amyloidosis and AL confirmed by myocardium biopsies,which is quite rare. He is in persistent atrial fibrillation and is on blood thinners. He has had BMA and biopsy. He also has is thought to have Marginal Zone Lymphoma -( possibly WM)?
He has had 6 Rituxan infusions at a center of excellence in NJ. We were not told and upset to know it has depleted has B cell, which can involve 6 months - 1 year. We are inquiring about a Booster different from the initial MRNA COVID vaccine he received, or Regeneron, and also are concerned it may not boost immunity and wonder about the Fall influenza vaccine's effectiveness, It has been a confusing challenge. his current MD in NJ says NO, and wants to wait for CDC or FDA approval.( THAT COULD TAKE FOREVER)
I feel patients should have the right to request and receive the booster . This MD is also considering ACALA treatment which we have not agreed to
Our question is whether to pursue any other type treatment or not. We are currently getting a third opinion at Memorial Sloan Kettering
Would appreciate your thoughts and welcome information about a support group in N New Jersey.

Hi Jam,
Like your MD in NJ, Mayo Clinic is not recommending booster shots until they are approved by the FDA. Here is the official statement to our patients
"Immunization boosters have been given in many situations and have generally been considered safe. However, COVID-19 vaccine boosters have not been thoroughly studied. We recognize the support for COVID-19 immunization boosters by some experts in the field, but an official recommendation from the FDA regarding COVID-19 boosters in immunocompromised patients has not been released."

I know you want him to be protected from COVID. Along with being fully vaccinated (2 shots), your best protection includes wearing a mask, distancing and washing your hands.

@loribmt may have more to add about immunity levels post vaccine and living with a compromised immune system.

It sounds like you are doing the right thing by seeking a third opinion about treatment options to be sure to know all the possible options. Have you considered asking about clinical trials that may be available for your husband's condition?

My husband has been diagnosed with cardiac WTTR amyloidosis and AL confirmed by myocardium biopsies,which is quite rare. He is in persistent atrial fibrillation and is on blood thinners. He has had BMA and biopsy. He also has is thought to have Marginal Zone Lymphoma -( possibly WM)?
He has had 6 Rituxan infusions at a center of excellence in NJ. We were not told and upset to know it has depleted has B cell, which can involve 6 months - 1 year. We are inquiring about a Booster different from the initial MRNA COVID vaccine he received, or Regeneron, and also are concerned it may not boost immunity and wonder about the Fall influenza vaccine's effectiveness, It has been a confusing challenge. his current MD in NJ says NO, and wants to wait for CDC or FDA approval.( THAT COULD TAKE FOREVER)
I feel patients should have the right to request and receive the booster . This MD is also considering ACALA treatment which we have not agreed to
Our question is whether to pursue any other type treatment or not. We are currently getting a third opinion at Memorial Sloan Kettering
Would appreciate your thoughts and welcome information about a support group in N New Jersey.

Hi, @colleenyoung mentioned that I might have more information for you. Since I’ve had Rituximab and share similar concerns with you and your husband I might have something to contribute. I’m away from my computer right now and will reply soon.