Waldenström's Macroglobulinemia

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rukinsa Sent from my iPhoneOn Apr 19, 2023, at 12:37 PM, Mayo Clinic C=
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I am assuming you had a bone marrow biopsy to be diagnosed with WM. Depending on what year the BMB was performed you should know your mutations. The mutations and data help our WM specialists determine what treatments they would recommend when symptoms occur.
I am not sure what you are referring to with “protein antibodies.”

I just had a BMB which showed MD588 mutation and IgM antibodies. Can I expect more of these changes to progress with the disease

i was diagnose with waldenstrom 2 years and 2 months my levels are increasing and know Sam at 3500 problem more know going back in July to dr and blood work i would like to know if i go to Mayo clinic is the treatment better or more testing

Hi @robertk, A second opinion can be reassuring. If you’d like to request an appointment at one of the 3 Mayo Campuses, here is the link to get you started:
http://mayocl.in/1mtmR63

Just follow the prompts on the page and it will help you with the application process.

Would you mind telling me a little more about your diagnosis? Did you have a bone marrow biopsy to determine if you have any specific mutations for WM? Are you currently under treatment?

Yes I had bone marrow that diagnosed as WD 2 year ago my level stayed around 2700 and the last six months it has been increasing 300 every 3months I will have to go on my Carle for the the exact label

Hi, my name is Patrick and I was just diagnosed with Waldenström macroglobulinemia last week after the reading of my bone biopsy. I was also diagnosed with a blood disorder called, Cryoglobulinemia, it cause my blood to become thick and could cause a stroke.

Starting July 10th…The treatment will be six cycles of Bendamustine and Rituximab. I know each person will respond differently, however; can anyone give me an idea of what I can expect?

Thanks 🙏🏾
Patrick

Yes, do you too?

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?

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