Waldenström's Macroglobulinemia

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.

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.

The IWMF is a great resource. Thank you for sharing.

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

Just diagnosed with WM. Anyone on oral chemotherapy?

I am new here and recently diagnosed with Waldenstrom Macroglobulinamia. I would like to correspond with others who have this blood cancer to learn tips to deal with this condition.,

I was recently diagnosed with Waldenstrom Macroglobulinemia. My hematologist/oncologist will see me every 6 months for labs and office appointment. Till then no treatments. Just watching and waiting. I would like to hear from others with this diagnosis.

Went in to my general practitioner for my yearly checkup. He called me back, wanting more labs. Something wasn't right & he couldn't put a finger on it. That was in January, 2015. I kept going back for still more labs. Finally in March, he called me & said he was referring me to a hematologist/oncologist. She was checking me for my severe anemia. One test led to another, till finally she did a biopsy. I still was not concerned. Then she called me in, asking me to bring my husband. That was June. I was shocked! Got a second opinion...same thing.

Welcome, @66andcounting.
I hope you and @dcp45 will connect. dcp also recently joined Connect.

66andcounting, with not having any symptoms, how was WM diagnosed for you?

I was diagnosed with WM in 2015. As of yet, I am stable, no symptoms, no treatments. Every 3 mos. I get my labs done. Every 6 mos, I see my oncologist. Very slow growing. Some people never have treatments! Life goes on. Yes, I constantly live with the fact that I do have cancer, but I thank God every day for where I'm at.