Treatment: Hi, has anyone been given a... - Non Hodgkin's Lym...

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Treatment

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Hi, has anyone been given a combination of bendamustadine and rituximab as a maintenance treatment? I have read that this can prolong remission further than rituximab alone. I don't think this is available yet in UK as a standard treatment. However, I believe it may be under consideration.

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25 Replies
Calipewings_2016 profile image
Calipewings_2016

I'm on these meds for my treatment (not maintenance). I just finished my 4th cycle and I have only had minor side effects.

in reply to Calipewings_2016

Interesting. I assume you are not based in UK?

Calipewings_2016 profile image
Calipewings_2016 in reply to

No the US.

in reply to Calipewings_2016

Yes, I've read it's used in the US. It doesn't seem to be generally available here yet, though some have got it in London. Zip code lottery here. :)

Whitley55 profile image
Whitley55 in reply to Calipewings_2016

Both for treatment but Rituxin for mtce

Smileyman profile image
Smileyman

Has there been a clinical trial to support this treatment path, or perhaps are those having this treatment doing so as part of a trial? If there is already evidence to suggest this is a worthwhile treatment path then please share the details so others may discuss with their doctors.

in reply to Smileyman

Hi Smileyman, I have found a clinic trial comparing it to R-CHOP and R-CVP. clinicaltrials.gov/ct2/show.... I have also read in forums that people are getting it at St Bart's Hospital in London. I read that the haematologist there has been involved in research associated with it. The Lymphomas organisation in UK has said that it is available via the Cancer Drugs Fund in UK but only given when applied for. Each hospital trust makes its own decisions on treatment protocols. NICE hasn't recommended it yet. The Lymphomas organisation said that R-CVP with maintenance Ritiximab(Rituxan) is still regarded as gold-standard in UK and is showing excellent results.

Tinkerbellcgy profile image
Tinkerbellcgy

In 2016, I received 6 cycles of Rituximab and Bendamustine as my primary course of chemo (not as maintenance) for a relapse of Follicular NHL. I am in Alberta, Canada.

wmay13241 profile image
wmay13241 in reply to Tinkerbellcgy

Same experience for my wife who has follicular lymphoma.

in reply to wmay13241

I hope your wife is doing well.

JeanL54 profile image
JeanL54 in reply to Tinkerbellcgy

I had this same treatment in 2011 -6 cycles of bendamustine and rituximab, then was to do 2 years of rituximab maintenance butonly received 2 treatments as blood got too low and I ended up in the hospital for a week withan infection that they couldn't identify. Stopped maintenance and I still feel fine, still thanking God every day for my healing. It was a cklinical trial I was on and from what I understand the results are about the same as R-chop.

JeanL54 profile image
JeanL54 in reply to JeanL54

My treatments were in Ottawa, Ontario.

All the best with your treatments!

in reply to JeanL54

Thanks Jean. Very interesting and I am so glad you are doing well.

JeanL54 profile image
JeanL54 in reply to

This is the link they sent me to compare the different treatments:

clinicaltrials.gov/ct2/show...

A lot of reading and it all boils down to the fact that they are almost the same.

Take care and best wishes.

in reply to Tinkerbellcgy

Thanks Tinkerbellcg. Great place to be :)

R-16728 profile image
R-16728 in reply to Tinkerbellcgy

Me too. I'm not aware of patients receiving this regimen as "maintenance".

Calipewings_2016 profile image
Calipewings_2016

Last week I had my 4th cycle of tx and i had CT. Today I found out that my CT shows no evidence of Lymphoma and my lymph nodes have shrunk. Although I'm not sure if I am done with treatment, I'm waiting to talk to my doctor for more info.

in reply to Calipewings_2016

Fantastic result!! :)

Calipewings_2016 profile image
Calipewings_2016 in reply to Calipewings_2016

I found out yesterday that I do have to complete 2 more cycles making it a total of 6 (1 day of both & the next just the chemo, every 28 days). I'm not cancer-free yet but I'm making great progress. I haven't been told anything about maintenance.

BelindaTupper profile image
BelindaTupper

I'm in Canada and have been on Rituximab maintenance treatment for almost 2 years. I just had the 7th of 8 treatments. My original chemo in 2015 was (6 rounds - 4 weeks apart) of Bendamustine and Rituximab. I wonder if the dosage would be different if it was offered as a maintenance treatment?

in reply to BelindaTupper

Hi BelindaTupper. I don't know. I thought it was being offered as a maintenance treatment but now I realise that it is an alternative to R-CVP/R-CHOP.

Reem-ayoub profile image
Reem-ayoub in reply to

Hi Maurachristine. What type of NHL do you have? BR is a tolerable treatment with similar if not better outcome to RCHOP minus the toxicity of RCHOP or RCVP. In mantle cell lymphoma it is recommended for older unfit patients but nevertheless, my husband, who just turned 50, was put on it by his hematologist. The reason was due to the pathology tests that showed he had an indolent type. So he did 5 cycles of BR but the transplant doctor was not satisfied with the rate of improvement and was afraid of stem cell toxicity which BR might cause for patients moving on to stem cell transplant. She put us on RDHAP protocol as it is more aggressive and has cytarabine which is a good medicine for induction prior to stem cell transplant. What I' trying to tell you is that it depends on the type of NHL, age and whether or not transplant is being scheduled. BR is definitely a breeze compared to regimens containing harsh meds like cisplatin and cytarabine. I wish my husband could stay on it. But we are now almost done with this pase and Friday he is scheduled to have his stem cells extracted. Best of luck with your treatment plan.

Reem

in reply to Reem-ayoub

Hi Reem

Many thanks for your explanation. I am sorry to hear about your husband and will be crossing fingers and toes that his trans plant goes well. I have follicular stage 2B, grade 2 NHL. I will discuss it with my consultant and I would concur with your view that it will be applied on a case by case basis. I was fit and otherwise fit and well when diagnosed. I tolerated the Rcvp very well bar fatigue. Good luck. It must be very tough on you. My husband has been magnificent but he occasionally cracks. I am relieved when he does so because I then get the opportunity to give him support too. Keep me posted.

Reem-ayoub profile image
Reem-ayoub in reply to

Hopefully Maura you shall over come this phase of treatment too. I am assuming you are looking at BR as a second line treatment? Well in Mantle Cell it is used when the disease relapses. So this might be the reasoning behind your consultant's suggestion. All the best to you too. I wish you and your husband the strength you need to pass through this. Thanks for your support.

Reem

in reply to Reem-ayoub

Thanks Reem. You are probably correct. I was diagnosed at 50 so able to cope with the rigours of treatment. It's a nuisance to get this disease so young but youth makes us more resilient. All the luck in the world for the harvest.

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