Waldenstrom MaCROGLOBULINEMIA

[music1717]

Hi, Dear Folks...I have WM....rare blood cancer...Waldenstrom Macroglobulinemia...It's been difficult to find folks with this type of cancer...I am also on Imbruvica...The side effects seem to be far and wide...and Many...I ache all over and take ibuprofen to ease the pain...I'm not wimpy, at all...but am just getting tired of some of these side effects ...muscle pain, fatigue, weight gain...Anyone else out there dealing with these side effects and/or have WM? Thanks a bunch!

[Cllcanada Top Poster CURE Hero]

WM and CLL are both subtypes of NHL and quite different, but I have known several patients with both. Please understand that while there is some cross-over between the two cancers they are not the same. Fortunately treatments can be similar.

I wish you all the best in your quest for information, there are forums out there, specifically for WM.

iwmf.com/get-support/us-and...

~chris

[lankisterguy Volunteer]

I agree with Cllcanada-chris,

There is a long established & active WM support community in New York City that uses the same meeting space as our CLL Society group. They get about twice as many people as we do to their 6 X per year meetings. (There actually are 4 CLL groups that meet monthly in metro NY and only one WM group that meets bi-monthly). And we have one joint member that has both conditions. iwmf.com/get-support/us-and...

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Their NYC organizer is very helpful and experienced Mitch Orfuss - his email and phone are on the website under New York

iwmf.com/get-support/us-and...

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Also the LLS has a online and in person support group that may be able to help you find answers. communityview.lls.org/dashb...

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Len

[Lola69]

Hello!

Imbruvica and ibuprofen don’t mix well. U may wanna ask your doctor about that.

[CLLB]

My younger sister, who is in her mid-50s, has been dealing with Waldenstrom’s for many years. She has had chemo several times and has had issues with her short-term memory (which she assumes — or has been told — is a side effect of the disease). I was diagnosed with CLL just over a year ago.

[Jm954 Administrator]

Hi, I'm on Ibrutinib and have experienced all these side effects ...muscle pain, fatigue, weight gain but they reduced over time and I continued with Ibruitinib.

Talk to your Dr about your side effects, they may have ideas to minimise them and try to keep going with the Ibruitinib if you can.

Best wishes

[Hidden]

It maybe irrelevant but I suffered with lots of aches and pains all over for years and other symptoms and I came to realise much of it was caused by dietary intolerances.. It maybe a temporary side effect of your medication or another source but seeing a nutritionist or doing a food elimination diet might give you some relief..

Stuart

[WaldenC in reply to Hidden]

I totally agree on the food intolerances. I go on an AIP diet from time to time and I feel 75% better. This is called the Auto immune Paleo. It’s basically Paleo with eggs, nuts and nightshades omitted. It’s not an easy diet to stick to but it sure does make a difference for me. I don’t seem to be able to lose weight no matter what I do. I never heard of Imbruvica causing weight gain until joining this site. Maybe???

[nannieoakley1943]

Hello music 1717. I was diagnosed with WM in March of 2018. Had 6 months of Bendamustine/Rituxin/Neulasta and all my numbers are getting better though I'm not in complete remission. I am not just on Rituxin every 28 days. Also on Xarelta as I had 3 superficial blood clots along the way. But have experienced few other side effects. Oh yes---I have gained about 12 pounds and not happy about that but there are worse side effects for sure. Hope yours subside soon and that you are feeling much better by the time you read this!