Waldenström's Macroglobulinemia

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

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

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.

Does anyone have any tips on finding out if a specific medication is covered on an insurance plan, work or marketplace before committing to the plan? I will be signing up for a new plan but do not want to find out afterwards that the medication is not covered.

Being a fellow WMer and familiar with immunotherapy meds and costs, I can tell you that plans vary from state to state. Before signing up for a specific plan, they should be able to tell you if a certain medication is covered and, if so, what your out-of-pocket cost will be. Drugs like Ibrutinib & Zanubrutinib come from Specialty Pharmacies. You also need to check what your yearly deductible will be. It is not an easy process to work through. Good luck.

Trust you already asked your insurance that question.
If on Medicare, try phoning them to ask whether a particular Med is covered.

I’m between a rock and a hard place as far as being diagnosed with WM. The reason being, in 2019 I discovered my blood wasn’t doing so good. I was born with a number of rare and very rare conditions, including genetic defects. My body is so messed up, my doctors are having trouble diagnosing me correctly. One moment they’re saying my blood is listed as Kappa light chain IgM MGUS a rare blood disorder. They go on the assumption it’s going to progress into Multiple Myeloma because my brother died from it. Then with further information given and symptoms, they’re saying I have Non Hodgkin’s Lymphoma. The problem is my MGUS is progressing differently than what they expected. Now they’re saying it’s progressing into Waldenstrom Macroglobulimia. I thought, they finally found the answer of what cancer my blood is turning into.

Remember I said I was born all messed up with one rare problem after another. As my cells mutate, they discovered something very rare is happening to my blood. Because my blood is IgM MGUS, it’s doing something very rare. I assume in your dad’s case of WM, it’s mutating inside the bone marrow like it normally should do. All indications are that my WM is progressing directly in the blood and not in the bone marrow inside the bones. If it turns out like they think it’s going to, I’ll be classified as only 1 in 3.5 million people in the United States that it happens too like that. As for your dad, to me it seems his body is getting overwhelmed with mutated cells. Please update us, I’m very scared as is, as my own blood is loosing the battle. @becky1024

@newwaldenguy, how are you doing? Did you get answers about insurance coverage for your treatment plan? Are you still planning to seek a second opinion?

Hi. Thanks for asking. My insurance covered the medication and I already started. No side effects so far which is great. I am still scheduled for a second opinion and I plan to follow through. That is the good news and I am very grateful to be on oral therapy.

I will need to switch from my COBRA coverage at some point so I will need to do some research with my new coverage. I would hate to switch and then find out the medication is not covered under the new plan after the fact. But I have some time before facing that issue. Seem tricky to get clear answers about medication coverage before signing up with a plan. But once signed up, I will be stuck until open enrollment or qualifying event. Seems a bit backward.

Regards