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Waldenstroms and amyloidosis

Blood Cancers & Disorders | Last Active: Apr 28 8:35pm | Replies (72)

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@warrens

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.

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Replies to "My understanding of Waldenstroms and amyloidosis is that it is a genetic disease that strikes primarily..."

So sorry to hear about your wife’s passing. Yes, Waldstoms is ‘incurable’ but can be managed and go into remission for years. Chemo regimes seem to be able to induce remission in many. Because there are so few cases (~1500 in US) research is limited. Many cases are just in a ‘watch and wait’ process until symptoms develop that require treatment. Sometimes patients are in w&w for decades! There are WM specialists listed on the website at WMF who can be called on for consultations if needed.

Waldstrom’s can have an MYD88 genetic mutation but not all patients have the mututation. There are some indicators of familial genetics but as yet they do not seem to recommend testing. I’ve had my kids mention it to their doctors, so it’s on their record in case they start showing any symptoms. My husband is just in phase 1 of WM treatment at age 75. We are learning more and more as we go through this experience.