How to prepare for after first infusion treatment for Waldenstrom?

I started my infusion treatment in November of 2025 after a period of watch and wait. First, I will share with you what I had been told; everyone reacts differntly to treatment. So my experience may be different than what you will experience. It is also been often repeated " when you meet one person with WM, you have met one person with WM". Meaning, everyone's WM symtoms may be different, how they react and respond to treatment also varies.
Hopefully your treatment team is knowledgeable about WM. If so, they have gone over in detail the infusion process, reviewed possible side effects that could occur during the treatment as well as after the infusion possible side effects. They should also have prescribed recomended drugs that help to combat possible side effects. Ask questions of your team so that you comfortable with the entire process and you and your spouse are better prepared.
In my case, I have not had any negative reaction to the B/R infusions. My side effects after infusion have been minimal, some fatigue and GI issues. Prior to my treatment, I tried to get as informed as possible. I joined this forum as well as the IWMF forum. My wife and I had discussions with my treatment team concerning treatment options and the treatment process. We also sought a second opinion with another doctor to discuss those options. There are also support groups.
Best of luck and stay positive.

@mikecawley Thanks for your reply & advice. May I ask, how long after the treatment ended, did the Fatigue and GI issues persist? and did they resolve themselves, or are you taking meds to control?
I was sent to the MAYO clinic in Phoenix by my local Hematologist, so I hope I am in good hands!

I experienced fatigue for about 2-3 days after my most recent infusion. I was fine after that. During the past infusions, I was able to work-out in the afternoons after completing each of the first three cycles. I had GI issues that lasted a few days after each treatment, nothing that required more than over the counter stool sofeners. I would also recomend that you drink a LOT of fluids. Exercising , if possible, is also benefitial.
I am sure that you are in very good hands with Mayo, Still, do not be afraid to ask questions until you are comfortable with their answers.
Are you doing Bendamustine and Rituximab? Will you be receiving any meds for possible increases in Uric acid as well as viral infections?
If you have not already done so you might want to check-out the International WM Foundation website.

@mikecawley They are assessing my Neuropathy before recommending a treatment. It will be Rituximab and maybe something else. Your comments have taken some apprehension out of my mind! Thanks a lot.

@allessio77, you are certainly in good hands at Mayo Clinic. 🙂

May I ask what type of infusion treatment you're getting?

I was diagnosed with WM last year. My hematologist recommended Rituximab because it would also alleviate my neuropathy issues. I said no. Three months later he again recommended the Rituximab and I went ahead. I met with medical team who prepared me for the procedure.
I had four infusions a week apart. The first left me very tired but I did not need the anti-nausea meds they had given me. The next three sessions went fine with no side effects and it did help with the neuropathy pain. After the last am treatment I went to a movie that afternoon.
Doctor wanted the next round six months later so that’s coming up soon. I do not expect any problems this time either, hoping again for further pain relief.
I also have myelofibrosis and have been taking 500 mg of Hydroxyurea daily for two years. I continue to be active and enjoy all my usual activities.
I will not let my cancer define me. I let my faith and attitude do that.
I pray that all goes well for you, too, my friend. 🙏🏽👍🏼

@colleenyoung Treatment still under consideration. My Hematologist wants the Neurologist to further assess the extent of my Neuropathy. I have that appointment in May, with a probable final recommendation the 1st week of June.

Hi!
I have no medical background. My husband had his infusions during Covid. I believe it was 3 days each month from October to December. He did well except for the second month of treatments. The pharmacist said the titration would be slow the first time to see if any problems. There were no problems. On the second round they sped up the infusion and he felt very cold and was shaking. I called the nurse who called the doctor on call. He gave him a shot and he was back to normal.
I requested that they slow the treatment (infusion) down and that worked out fine. He had no other treatment issues. His IGM was back in normal range and so far has been okay.
The unknown is always scary and not everyone reacts the same.
I hope this writing helps both you and your husband.
M

@dunewalker thanks for sharing your positive experience. Rituximab kills healthy as well as monoclone B cells so you’ll have a weakened immune system and it’s recommended you wear a mask when in public. The “factory” that produces the monclone B cell remain uneffected so you will need to repeat infusions as new monclones are produced.