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Waldenström's Macroglobulinemia
Blood Cancers & Disorders | Last Active: Apr 23 10:15am | Replies (132)Comment receiving replies
Hi Patrick, (@drwill) Please accept my delayed welcome to Connect. I see you were recently diagnosed with WM and will be starting treatment soon. There are quite a few other members in the forum who have received the combination treatment of Bendamustine and Rituximab. Because many lymphomas share similar traits the treatment is also used for forms other than WM.
I’ve personally had infusions of Rituximab with no side effects whatsoever except for the initial infusion. That’s quite normal to have a reaction that first session. The nurses at the infusion center are well aware and actually anticipate a reaction. It’s not unusual to have benadryl or Solumedrol administered in the same IV. The Rituximab worked wonderfully to control my issue.
@valandsheri -Val, recently went through the same treatments for Follicular Lymphoma.
@jam5 ~whose husband has WM received the same.
Other members who have benefited from the same combo are @trixie1 @pokeyspride2002 @amtrakian
I hope these members will share their experiences with you so you know what to expect. ☺️
@ejrquast is a member in the WM support group who shares very helpful information about WM and often encourages people with a new diagnosis to visit the International Waldenstrom Macroglobulinemia Foundation website. Here is that address: https://iwmf.com/
Have you learned more about your Cryoglobulinemia?
There’s a discussion with other members @marinella @zebra2022 @olivia348 @ slward1951 who may be able to give you some insights.
https://connect.mayoclinic.org/discussion/cryoglobenemia/
I know it’s frightening to be facing a new health diagnosis and feeling alone, not knowing what to anticipate. It really helps to be able to speak with other members who have faced a similar situation so I hope the members I’ve tagged will be able to help you out!
Please let me know how you’re doing with the treatments and if I can help you in any way. Do you have any specific questions?
Replies to "Hi Patrick, (@drwill) Please accept my delayed welcome to Connect. I see you were recently diagnosed..."
Thank you so much for your in-depth response. Great information and much appreciated.
I doing well. I had the first infusion with only the Bendamustine. I had some slight issues mainly due to hydration. My next session will include the Rituximab. I’m told it’s a much longer process because it has to be administered slowly. Looking forward to it.
Thanks 🙏🏾
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There you are, My Friend! I've been hiding in the rock pile! Hope that you had a great Fourth of July. Other than both of us coming down with stuffed up noses and feeling as though we have "caught" something, all is well. Keeping an eye on this and will test for Covid tomorrow to make sure it hasn't finally caught up with us. We have dodged it, so far.
More great news though! Val had his PETCT last Friday and he is, again, unremarkable. No evidence of cancer, lights out, Deauville score of 1. What a feeling of gratitude and happiness!!!! Next follow up appointment with his hematologist is 8/2.
He has been working, within his fatigue range, to get his strength and stamina back. He was able and willing to walk with our neighbor the day before yesterday up and over the hill and he did and it felt good.
What a journey this has been. Thank you for being here to run the trail with us. I will reply to Patrick about Val's treatment and how he it went for him. If I could get Val to sit at the computer and type up his own story it would truly be a Christmas Miracle. Soooo....I'll interpret. LOL
How are you doing? Have you been doing anything creative lately? I finished a small gourd bowl and am happy with it, but, I have been spending most of my time in the yard. I get a bit of tunnel vision going and am very task oriented. I want to get this landscaping finished!!! I hear my Little Workshop beckoning me in for some fun. Soon!
Big hug launched!
Sheri