1. < Blood Cancers & Disorders

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

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jul 23, 2019
In reply to @zellheff "Yes that’s right - we did touch base in the spring. Thanks for your reply. I’ll..." + (show)
@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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@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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srmora1 | @srmora1 | Sep 20, 2019

@zellheff
@becsbuddy
@rafe

Hi,

Reading a report online with the name :

Immunotherapy: Beyond Anti–PD-1 and Anti–PD-L1 Therapies

I found this:

" immune response
activates myeloid cells=

Increase produccion
of ROS reactive oxigen species

Free radical peroxinitride
Cause T-cell nitration

"atenuated " Nitration-Oxidated T-cells
lose abilities to bind-kill "

As it could be the same with B-cells

¿ Have any of you ever checked levels of antioxidant ascorbic acid ?

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susanlim | @susanlim | Oct 28, 2019

I am so tired of people posting about God in a way which is proselytizing. Look it up. This is a private matter for most people and unhelpful and even destructive to those who for reasons of their own cannot follow your very private regimen of healing. This is a medical site. The tone of superiority with your claim to special ownership of GOD is really not kind or helpful. You could say that spiritual support helps you and leave it at that. This is not a recruitment center.

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TERESA LOGAN | @quiteachiver75 | Oct 28, 2019

YES I STRONGLY AGREE WITH WHAT YOU HAVE WRITTEN. THERES A TIME AND PLACE FOR EVERYTHING

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Oct 28, 2019

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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1 reply
susanlim | @susanlim | Oct 28, 2019
In reply to @JustinMcClanahan "It is important to remember our differences here on Connect. Each member brings their own experiences,..." + (show)
@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.

REPLY
njnana | @njnana | Oct 28, 2019
In reply to @zellheff "Yes that’s right - we did touch base in the spring. Thanks for your reply. I’ll..." + (show)
@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.

Jump to this post

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

REPLY
amtrakian. Don Castle, MPA | @amtrakian | Feb 18, 2020
In reply to @njnana "I hope you are tolerating the Rituximab & Bendamustine as best as possible. I have a..." + (show)
@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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chuck218 | @chuck218 | Feb 25, 2020

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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1 reply
amtrakian. Don Castle, MPA | @amtrakian | Feb 25, 2020
In reply to @chuck218 "Had six months of same treatment. Finished in December. Now in complete remission. Had no reactions...." + (show)
@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

Jump to this post

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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