Waldenström's Macroglobulinemia

This is my first time on this site. I was recently diagnosed with WM also . Sounds like i am close to where you are but my Dr suggested i start chemo. can i ask what your igm numbers are being you are not doing chemo yet. Thanks

Thank you so much for the mail and vote of support! I have been feeling alone now for a very long time. So glad I found this forum. The symptomology that had led me to this point to seek help has been daunting to say the least. Thanks again for saying hello! Looking forward to some long nights of reading

I am sorry to read you are now experiencing WM symptoms. I recommend that you contact the International Waldenstrom’s Macroglobulinemia Foundation, IWMF, at https://iwmf.com/
I was diagnosed in 2014 and am thankful for all the excellent educational materials and support through the IWMF.
I personally have not experienced stem cell collection but have a member in our MN & WI support group with personal experience. If you search for the IWMF, link above, you will see “Patients and Caregivers”. If you click on that, you will see all the support and educational materials available including the LIFELINE.
If you have questions or need direction, I would be most happy to assist.
The great news is, since 2014, WM treatments and research has greatly improved. With the IWMF, you are never alone with our rare blood cancer.

Hello,
Thinking a Waldonstoms diagnosis is eminent. Have IgA deficiency and Selective IgG 2&3 deficiency and an IgM spike- have been getting ver sick with upper Respiratory Illness, asthma, gastric disease lately. I turn 60 this year and have had MGUS monitored since 2014 . Has anyone been storing their own Stem cells, received them or heard about this therapy?

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

@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?

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

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

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.