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Waldenström's Macroglobulinemia
Blood Cancers & Disorders | Last Active: Apr 23 10:15am | Replies (132)Comment receiving replies
I've been on oral chemo for a couple of years. Currently taking 2 capsules in morning and 2 capsules in evening of zanubrutinib. What treatment are you considering? You may wish to consider checking out the resources provided by the IWMF at IWMF.com. also you can communicate directly with thousands of folks affected by WM via their online discussion list ( https://iwmf.com/iwmf-connect-and-online-discussion-forums/) and their closed Facebook group - see https://www.facebook.com/groups/wmsupportgroup/?ref=share
Replies to "I've been on oral chemo for a couple of years. Currently taking 2 capsules in morning..."
The following link will direct you to the 2022 Virtual Educational Forum - Multi-Omics for individuals by Dr. Treon: https://m.youtube.com/watch?v=yqns91T5Cmw
If you go to the Conclusion screen, you will see an easy to understand summary.
I happen o be an IWMF SG Leader and highly recommend the above mentioned resources. Also, the IWMF offers a Lifeline and you can contact patients for real life experiences, i.e. Zanubrutinib.
I took Ibrutinib, until it failed after just two years, but members respond well with fewer side effects with Zanubrutinib.
It is important to know your mutations prior to initiating any treatment.
Please feel free to contact me if you need assistance with IWMF resources.
My doctor is recommending zanubrutinib. I am working on second opinion and trying to see if my insurance will cover the med. Otherwise need to see what it will cost. I was just diagnosed this past Tues. so feeling a bit overwhelmed with everything I need to learn. Dealing with insurance is rarely a pleasant interaction. Thank you for the links. I will check them out.
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The IWMF is a great resource. Thank you for sharing.