Treatment for NHL: Rituximab & Bendamustine

Posted by chuck218 @chuck218, Jun 18, 2019

will be starting treatment for NHL two days a month for six months. Any tips or things I should be concerned about? Rituximab & Bendamustine

It is important to remember our differences here on Connect. Each member brings their own experiences, background, beliefs, and knowledge to Connect and more often than not, that is the strength of a diverse community. However, it is good to keep the Community Guidelines (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/) in mind when posting.

In particular, Section 2 states:
– Be inclusive. Not everyone shares the same religious or political beliefs. Don't impose your beliefs on others.
– Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.

Back to Non-Hodgkin's Lymphoma and Rituxan treatments. @susanlim, you had mentioned in another discussion that you were still in the wait and watch phase, is this still true or are you potentially facing Rituxan or another treatment? @quiteachiver75, if you are comfortable sharing, have you been diagnosed with NHL as well?

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@JustinMcClanahan

It is important to remember our differences here on Connect. Each member brings their own experiences, background, beliefs, and knowledge to Connect and more often than not, that is the strength of a diverse community. However, it is good to keep the Community Guidelines (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/) in mind when posting.

In particular, Section 2 states:
– Be inclusive. Not everyone shares the same religious or political beliefs. Don't impose your beliefs on others.
– Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.

Back to Non-Hodgkin's Lymphoma and Rituxan treatments. @susanlim, you had mentioned in another discussion that you were still in the wait and watch phase, is this still true or are you potentially facing Rituxan or another treatment? @quiteachiver75, if you are comfortable sharing, have you been diagnosed with NHL as well?

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Thank you. Agreed.

I am still on watch and wait. A question I had for the group is why do you all seem to have annual CT scans? My doctor is fully opposed to this, saying it subjects the body to unnecessary radiation. The basic protocol I am living with is that in the absence of symptoms or difficult or stigmatizing tumors, that we do nothing except periodic check ups and blood work. I’d be interested in hearing the reasoning behind the annual cat scans.

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@zellheff

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.

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Checking in to see how your son is doing (and you as the caretaker)…..

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@njnana

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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I found your post valuable. I have chl 4b, which has returned after abvd and keytruda. I have another biopsy and then a treatment plan at mayo clinic. I spend time reviewing clinical trials and protocols. Please keep in touch and let me know how you are doing. Don

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Had six months of same treatment. Finished in December. Now in complete remission. Had no reactions. Was able to continue to go to gym thru treatments. Did not have much fatigue.
I wish you the best. Stay positive you got this
BTW no hair loss

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@chuck218

Had six months of same treatment. Finished in December. Now in complete remission. Had no reactions. Was able to continue to go to gym thru treatments. Did not have much fatigue.
I wish you the best. Stay positive you got this
BTW no hair loss

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Chuck
Congratulations on remission from NHL. Also happy to hear that you led a normal life while on the chemo/antibody treatment . When I was on the first line ABVD protocol from February to June 2019, I had to miss the last cycle because I could hardly walk alone. I am hoping that my CHL does not spread anymore. Exercise is also a big part of my life, and chemotherapy really saps the energy level dramatically. BEST OF HEALTH. DON.

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Hi. I had R-CHOP every 3 weeks back in 2015 for very advanced DLBCL, which is a Non-hodkins Lymphoma. Mine had settle pretty much everywhere in my bones, but not touched any organs. I didn't need any radiotherapy, which I was very pleased about. I was 66 at the time. I am now 4.5 years in remission. The only thing that got from my chemo was peripheral neuropathy in both my feet, which has not gone away. For me, it is debilitating, although not painful. It feels like I am earing socks with superglue in them. Weird. Your Oncology nurse will mention peripheral Neuropathy to you, I am sure. Discuss it at length. See what can be done to avoid it. Not all patients get it. Worth talking about it with the doctor as well. Best of luck. Treatments for NHL today is very successful.

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