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Waldenström's Macroglobulinemia
Hi, my dad has recently been diagnosed with WM. First things first; he told me 90% of his bone marrow was infected with the cancer. How severe would that be compared to other patients? He also falls into the high risk category. Has anybody here with WM fall into the high risk category as well?
Much thanks to all!
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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!!
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2 ReactionsHi 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
Could you please share the email address. Which department to contact?
Hi @nandita9009 The best way to initiate an appointment request would be to go directly to Mayo Clinic’s website.
http://mayocl.in/1mtmR63Here is the link for you:
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?
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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1 Reaction😂. I look forward to being characterized as “Unremarkable” one day. Thanks for your response.
Patrick
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1 ReactionThank you so much for sharing Val’s story. I can relate, it sounds like we are much alike. After the 1st two weeks, I to "shed" the "chemo cocoon" and begin to feel better.
Next cycle, I will have the Retuxaban, I will see how I respond to that.
Again, thanks for sharing, very encouraging. I will keep you posted. Tell Val I said Hello🙏🏾
It’s a great feeling!! I hope you’re unremarkable soon, too! 😄
Hi Patrick, I’m glad to hear the first infusion went well. I know it can be a little anxiety producing the first time or two. I can’t remember if I mentioned it or not, but the first Rituximab infusion occasionally elicits a reaction. That’s why it’s administered very slowly.
It’s nothing to fear because the infusion nurses are right there and will quickly slow down the rate of flow and administer benadryl and/or a steroid and sometimes a dose of tylenol precedes the session.
I know this is an eyebrow raiser but it’s pretty common and anticipated by the nurses. Once the corrections are made it’s clear sailing after that. As you learned, make sure you keep up your hydration before and after sessions.
@valandsheri were awesome in their response for you regarding Val’s similar course of treatment. I love how Connect brings people together! ☺️
When’s the next round?
Yes, I was told the next session, which is July 24, will take 8 hours. So I am getting mentally prepared.
I will definitely make sure I stay hydrated. Actually, when I go for lab’s every week, I will get the saline drops after the labs are taken.
It’s awesome to have someone to share this journey who is or has taken this life changing experience.
Enjoy your day.
Thanks 🙏🏾
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