Rituxan after BR Chemo: Has anyone had... - Non Hodgkin's Lym...

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Rituxan after BR Chemo

DDay2012 profile image
16 Replies

Has anyone had experience, with Rituxan maintenance treatments after BR chemo treatments. Oncologist wants a every other month for 2 years regiment.

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DDay2012 profile image
DDay2012
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16 Replies
DebsW profile image
DebsW

I’ve just finished 2 years of rituximab after 6 cycles of BR. Not too many problems, just fatigue. Not sure if this is related to rituximab or just getting over the cancer and chemo. Luckily I was able to have the rituximab by sub-cut injection into abdomen so it only took a few minutes rather than the few hours of infusion. Towards the end of treatment I was hospitalised twice with septicaemia probably due to my immune system being so low. A few months on and I’m feeling increasingly well, fatigue is decreasing and I’m loving life! For me immunotherapy was much easier with fewer side effects compared to chemo. Good luck!

Clarex2 profile image
Clarex2

Hi. I had RCHOP chemo and have been having Rituxan injections since last summer every 8 weeks, I will have them for another year. Its to keep the low grade nhl in remission longer. I have no side effects apart from weight gain. I was told this is a side effect and to exercise more. Hope this helps you.

wmay13241 profile image
wmay13241

My wife (72, aggressive FL) had 6 cycles of BR but progressed within 2 months of completing cycle 6. She planned to have maintenance rituximab. She had an NIH CAR-T infusion in March 2016 and remains in CR.

Andilynn profile image
Andilynn

I had two years of Rituxan infusions for marginal zone lymphoma. It’s been two and a half years since my last treatment. The only things I still deal with are chronically stuffy nasal passages (I was told it’s a result of the mouse component of the Rituxan) and very low immunity levels. My oncologist has recommended IVIG treatment to boost my immunity levels. I’m not keen on the idea of any treatments, but I will probably do it.

My best to you - I hope it goes smoothly for you!

KarenL1 profile image
KarenL1 in reply to Andilynn

I have marginal zone NHL, watch/wait but think chemo is just around the corner. Recently developed skin involvement. Mouse component?

DDay2012 profile image
DDay2012 in reply to KarenL1

Yea, do the research. Rituxan is partially developed in mice. So if you have a allergy to mice then it could cause issues. What I have seen is chronic nasal congestion. Combine that with cold and flu season and it can be a challenge. For Marginal Zone NHL Rituxan will be part of the chemo regiment almost guaranteed. I had 2-4 regiment rounds of Rituxan 2 years after diagnosis. About 6 months later the nasal congestion started and has been there on and off for 4 years.

Andilynn profile image
Andilynn in reply to DDay2012

That’s my experience too. I started four rounds of Rituxan within two weeks of diagnosis. Then maintenance. The first year it was every 8 weeks. I asked my oncologist if we could go to every 12 weeks the second year and he said okay as long as my blood work was good. I finished that in November 2016. My immunity levels are still really low. Have you seen that in your blood work too, DDay 2012?

Onedayatatime2 profile image
Onedayatatime2 in reply to Andilynn

Have doc test IVIG level, if it’s low the infusion is worth it! Husband’s level was low and it’s helped

Andilynn profile image
Andilynn in reply to Onedayatatime2

Mine are really low and I seem to have one health issue after the next. I suppose it’s time to go with the IVIG therapy to see if it makes a difference.

DDay2012 profile image
DDay2012

Thanks, I started BR chemo treatments last month and those will go to October. The Oncologist tells me yesterday, out of the blue, he wants me to continue the Rituxan treatments for 2 more years every other month. Wham! I was not expecting that and he has never mentioned it before in 6 years of seeing him and discussing treatment options.

Thanks for the response.

Just so you know I also have chronic nasal congestion and that was probably due to a couple 4- round Rituxan treatments I had 3-4 years ago.

Best of luck to you!

Andilynn profile image
Andilynn

Did you relapse? You mentioned that you had your initial treatments two years ago.

I hope you do well with your current treatments.

DDay2012 profile image
DDay2012 in reply to Andilynn

The 1st 4 rounds of Rituxan seemed to work. I had node swelling around my throat and was having issues breathing. So the 1st treatment of Rituxan did reduce the swelling. But within 18 months the swelling returned and we tried another 4 rounds of Rituxan. No clear results. So I lived with the swelling in the neck, eyes, throat for 3 more years along with nasal congestion from the Rituxan. Then my last CT scan said enough. Now I am in BR Chemo and so far after 2 rounds all swelling is gone. We will confirm with a CT scan after the next treatment in a month. It is after these BR chemo treatments that they want to do 12 more Rituxan treatments 1 month apart. I did read 2 trial results for Rituxan maintenance treatment that showed longer remission results. When we talked about treatments the Oncologist never brought this up until yesterday.

DDay2012 profile image
DDay2012 in reply to Andilynn

Blood work has been great through this whole thing. And still is after the BR chemo.

Andilynn profile image
Andilynn

I’ve also read that maintenance accounts for longer remission periods. Hopefully that will be true for all of us.

Best,

Andi

rafew profile image
rafew

Hi DDay, sounds like BR is doing well for you. I had Rituxan maintenance following first line FCR. The thought was that the maintenance would extend the progression free period. Unfortunately, by the time we came to the end of the 2 years, my lymph nodes had begun to misbehave and I was put into BR. I think the effectiveness of the maintenance is tied to our particular deletions. The higher the risk, the less effective it seems to be. At least it gave me 2 years between chemo treatments. I hope all goes well for you.

DDay2012 profile image
DDay2012

That is my worry too. I had 2 regiment rounds of Rituxan a few years before the BR treatment I am currently on. The 2nd round of Rituxan had no results. I worry that I will not have results from Rituxan as a maintenance program.

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