Waldenström's Macroglobulinemia

Hi @nandita9009 The best way to initiate an appointment request would be to go directly to Mayo Clinic’s website.
Here is the link for you:
http://mayocl.in/1mtmR63
The page will prompt you as a new patient. If you’d like to proceed with the request online, then simply follow the instructions and provide the information that’s requested.

If you scroll down the page you’ll see the locations and phone numbers for each Mayo Campus if you’d rather speak directly with a coordinator.
There are Three locations in the US.
Rochester, Minnesota Phoenix, Arizona
Jacksonville, Florida.

Have you or a loved one been diagnosed with Waldenström's Macroglobulinemia?

Hi

Could you please share the email address. Which department to contact?

Hi Sheri, I’ve been hiding in plain sight! 😅 Thank you so much for your wonderfully detailed and helpful reply to @drwill about the new meds he’ll be taking soon! Val came to mind right away when I read Patrick’s comment! I hope it helps to allay is concerns.

I am beyond thrilled to see that Val’s PET scan was perfect!! Unremarkable!! That is the best word to see when we’re in medical treatment. I think when we’re younger we feel the need to be thought of as remarkable or standing out. So the first time I heard it from my doctor i had a nanosecond of deflation until I realized what it meant. 😂. I heard “You’re unremarkable today!” So I replied, “Seriously? I’m not memorable?” He laughed and said “I can assure you that will never be the case. You cause me sleepless nights and haunt me 24/7” 😂😂 Poor guy. I think he used to have dark hair before he got me as a patient… I digress.

Val IS remarkable and it’s really reassuring to hear about his continued progress! I’m glad he’s Mr Sunshine again. I’m sure you are too! (Sending you a PM)

Thank you again for replying to Patrick.

Hi Patrick!

My husband, Val, just finished his treatment with Rituximab and Bendamustine at the end of May. He was diagnosed with Non-Hodkins Follicular Lymphoma. He was a Grade 2, Stage 4. It was mainly in his bone marrow. Boy oh Boy did he light up the PETCT! Looked like a Christmas Tree Man. He was scheduled to have 6 cycles, as you are, but his mid-cycle PETCT showed no evidence of cancer so he was able to stop at 4 cycles with one additional cycle of Rituximab only. When he sees his hematologist, in August, they will discuss Rituximab maintenance therapy.

As far as the treatment itself went: You are correct - everyone does respond differently. I say that because Val is a very healthy, robust, stubborn, 75 year old. I suppose that's not fair of me to say he is stubborn - he is determined. He tolerated the treatment very, very well. He didn't have any of the usual side effects - fatigue was it. Because he is so active, that really frustrated him, but he managed. In the beginning he said that he just didn't want to feel like "Crap". Lori burst his bubble and said that he would. She was right! The first two weeks after treatment were the hardest, but, they weren't so bad that he couldn't do anything. He was still going out to his workshop and puttering around. For instance, if there were an emergency he would still be able to go take care of it. After his second cycle he built steps with railroad ties going to my shop - I wouldn't suggest that amount of physical labor, but he was determined to finish the project, and he did. I could always tell when that two week period, after treatment, was coming to a close as he would start to "shed" the "chemo cocoon" and begin to feel better.

As for the actual treatment: He received the Rituximab first with a pre-med of Tylenol and Benadryl. The first treatment was slow (6 hours) as they have to titrate the dose to make sure there isn't a reaction. He did fine. I will get to the 2nd cycle in a bit. Then they give him the Bendamustine with a pre-med of Dexamethasone and Zofran. That's a very short run and he did well with that. He loved the Dexamethasone as the next morning he still had, as Lori calls it, a Dexy High. He said he felt great and his joints didn't hurt. He wanted to go back for more! LOL.

On his second cycle, oddly enough, he did have a reaction to the Rituximab. Very unusual. They had sped up the dosing because he did well on the first cycle. He started getting cold - really cold and quickly his mid back started hurting. Everything came to a screeching halt and they administered the "anti-venom", gave it a little while and he was back in business. He never had another reaction.

Be sure to follow along with Lori. She is amazing and helped me so much through this journey. Be well, stay the course! Please let me know how you are doing!!

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

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?

Yes, do you too?

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 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 @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?