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?

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!!

I was diagnosed 2 years ago. Lost 30 lbs, night sweats, etc. Treatment recommended same as you but got second opinion, now take 3 Brukinsa pills daily. My IgG and IgM improved, normal weight. Feel well.