Mayo Clinic Connect
will be starting treatment for NHL two days a month for six months. Any tips or things I should be concerned about? Rituximab & Bendamustine
Hello @chuck218. I'd like to invite @myla031, @bordercolliecra @mepowers @scsimpson and @njnana to this discussion as they have all discussed having rituximab treatments in this discussion, https://connect.mayoclinic.org/discussion/reaction-from-rituximab/. If you'd like, you can check out that discussion while you wait for some of them to share their experiences with this medication.
@chuck218, what concerns, or specific questions, do you have on your own for the other Connect members?
Liked by Becky, Volunteer Mentor
@chuck218 Good morning! I wasn’t tagged but I saw your post. I receive rituxan (rituximab) twice a year for my autoimmune disease. I had a bad reaction with the first infusion so the doctor had me pre-medicate with steroids before we tried again. It worked! I’ve had no side effects! My next dose is next week so we’ll see. The infusion is done very slowly, like 4-5 hours, so bring a good book! Oh, and it made my hair grow in curly! Good luck, Becky
Liked by Justin McClanahan
I hope you are tolerating the Rituximab & Bendamustine as best as possible. I have a rare Hodgkin lymphoma in which treatment for Non-Hodgkin lymphoma was recommended. I have had infusions of Rituximab in the summer of 2016 and have been stable since. My worst side effect was the increase in fatigue. I dealt with that by sleeping more and accepting that I was not able to do as much as I wanted. The heat and humidity bothered me more than usual. About 6 months after the infusions ended, my energy level increased, but not to what I had prior to lymphoma. If the Bendamustine upsets your stomach, you will test various foods that will keep the stomach more calm. My doctor warned me that I may gain weight from the medicine, and I gained twice as much as the average person. This increased the fatigue even more. I see my oncologist every 6 months and have not had a CT scan for 18 months. I am on 'watch & wait' and will most likely receive Rituximab for treatment again as needed. The benefit for lymphoma patients is that a great deal of research is being done for us because much success has resulted in the medications being administered over the years. By the time we may need more treatment, a better medication may have been approved. My recommendation to you is to try to continue to do the activities you have been doing, but avoid germs as much as possible. While receiving these medications, it lowers your resistance to germs and you do not want to get an infection during the treatment period. Best of luck to you and keep us posted on your progress!
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Hello – I noted that you said you have a rare form of Hodgkins that you are receiving rituxan for. Is this NLPHL?
That is what my 27 yo son was diagnosed with a couple years ago. His was pretty advanced. He was successfully treated with RCHOP, but unfortunately it returned shortly after he finished treatment. Docs at Wisconsin Carbone Cancer Center and at Mayo recommend an auto stem cell transplant as the best chance for putting this behind him. That’s what we are heading into now. He actually feels fine – but the Doc’s conclusion is we should treat aggressively now.
It’s difficult because this form of Hodgkins is so rare -they don’t have a lot of research re best treatment- and the disease seems to vary quite a bit from person to person.
My son handled earlier course of chemo just fine – hoping that means the conditioning chemo for the transplant won’t be too awful.
Hang in there with your treatment.
Hi Chuck216, I've received BR treatment twice [ 6 cycles each time] for CLL and have tolerated it fairly well. Pretreatment with Benedryl for the Bendamustine tended to knock me down and I was a little nauseated, but it passed a few days after each cycle. As others have said, the first infusion of Rituxan will be very slow. They start the drip rate slow to minimize reactions. I had rigors, and adding some benedryl helped. The nurses at the infusion center were the best. Advice? Treat yourself well – give your body time to recover after the second day – and stay hydrated. Best wishes.
Liked by Justin McClanahan, njnana
Yes that is the type of lymphoma I have —- I was in touch with you in March and April (if I recall dates correctly). The stem cell transplant would be the next step for most of us with this type. I am relieved to hear that your son is feeling fine right now. If time allows (and depending on the limits of his insurance), I would highly recommend getting a 2nd & 3rd opinion on whether the time is now right for the transplant. There are quite a few patients on the American Cancer Society support site that have shared their experiences with the transplant. The most important thing is to keep all germs away from your son so he can recover as quickly as possible. Best of luck to him, you and your family. You are all in my prayers!
And yes, we have a very rare form of lymphoma. Your son falls into the average age and gender of this lymphoma. The more of us that share our experience with Nodular lymphocyte-predominant Hodgkin lymphoma, the more we will help others who have this type. Being diagnosed at the age of 52 and a female through off the lymphoma teams at 3 teaching institutions with whom I met…..very uncertain what to do with me.
YES! Stay hydrated….if water was not your best friend, it should be now!
Yes that’s right – we did touch base in the spring. Thanks for your reply. I’ll post on how our son is doing. He will be staying with us – we’re calling our place his rehab. Center – and will I’m sure drive him crazy with protocols to avoid infections. From what I’m gathering – video games will be his means of staying sane during this time. I’ve offered to teach him to knit – not interested. 🙂
Hope you continue to do well – it’s good to hear from other folks with this same rare version of Hodgkins.
Had treatments July11&12. Doing good. No bad reactions and plenty of energy. Able to walk 3 miles a day plus 60 min gym workout. I do go to gym early AM when no one is there. God is good. It might be early but it helped by attitude about treatments.
That is great news! Hope your gym has a cleaner & towels or disinfectant wipes to clean equipment before you use to avoid germs. If not, bring your own to avoid germs. It's that one germ that could cause an infection that will delay your treatment, and you don't want that to happen. Best of luck to you and hope the next few months go very quickly for you!
@zellheff, it is great you are creating your own "rehab center" for your son. Although I have not had a cancer, I was born with a rare genetic bleeding disorder called hemophilia. As a result, it left many of my joints in end-stage arthritis from internal bleeding episodes and injuries. I had to have major surgery and my parents also took care of me during my rehab and PT. As you mentioned, video games were my best friend as I am not much older than your son and in that generation. If your son needs some suggestions on video games (if he hasn't already played them), I'd be happy to share some of my favorites.
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