bendamustine: has anyone ever been treated with... - CLL Support

CLL Support

23,335 members40,041 posts

bendamustine

greygirl profile image
16 Replies

has anyone ever been treated with just Bendamustine alone without a monoclonal antibody?

Written by
greygirl profile image
greygirl
To view profiles and participate in discussions please or .
Read more about...
16 Replies
dsspivak2018 profile image
dsspivak2018

If you’re elderly, Bendamustine is a great chemotherapy. If you’re young <70, don’t you dare use it unless you absolutely have to. It does more damage to your body than FCR.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply todsspivak2018

Do you have any references to support your comment that Bendamustine as a single agent does more damage than FCR? In combination with Rituximab, BR comes out as more gentle than FCR, hence its recommendations for older patients, so I'm surprised to read your comment.

Thanks,

Neil

cllady01 profile image
cllady01Former Volunteer in reply todsspivak2018

dsspivak, Where is the information that backs your statement? I am confused because there is nothing I can find that refers to the damage your refer to.

greygirl profile image
greygirl in reply tocllady01

maybe the damage was personal to her as what I experienced from ibrutinib. Others proclaimed the wonderful results they were having with practically no side effects. I believe I was spared any permanent "damage" because I had acupuncture to help me thru the rough times.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply todsspivak2018

Bendamustine has been used as a single agent in the former Soviet Union and GDR for 50 years...

The CLL10 trial directly compared FCR to bendamustine/rituxan [BR]... you can read about it from Dr. Sharman

cll-nhl.com/2013/11/fcr-ver...

The 'does more damage statement', I have never seen referenced, in fact Bendamustine is considered less myelotoxic than FCR, from my understanding. The purine analog component isn't as powerful as fludarabine.

greygirl profile image
greygirl in reply toCllcanada

that`s probably why if when I need treatment again it was suggested I do R/B. FCR resulted in too much toxicity for me and I only got about 7 months out of it anyway-care not to repeat it! then I thought about getting R again and I decided I didn`t want it for the third time. lo and behold my last appt. doc said he`d give me only B which mentally I had decided for anyway since bad things always happen to me when I combine drugs. my CD 20 was "dim" %, low, on last test anyway.

greygirl profile image
greygirl in reply todsspivak2018

well, I couldn`t stand ibrutinib- tried to do it twice, suffered crippling side effects then R/ Zydelig which put me in the hospital with pneumonitis the first month I started it. FCR was my first treatment and every side effect listed for each drug I experienced for the six months I did it and then for the next six months I was seeing a doc for all the leftover side effects and then never achieved a remission anyway. I`m 60, "healthy" and 13q14 IGHV1-69`01 family, mutation rate 0%. As Dr. Hamblin once put it I`m in the "middle bucket" Why is Bendamustine o.k. for elderly-will they die from the treatment anyway or did they run out of options? I looked at side effects for B and they`re about equal to the other alkylating agents out there. I`m hoping the "formula a chemist friend gave me continues to work-the only side effect I experience is my taste and smell are "off" at times. In fact, so many cancer cells flooded my blood stream yet my blood count stayed normal that my ONC asked me to come in and when he saw I looked good-had no sweats, fever, or huge lymph swelling he told me he`d just watch my blood work for next month or two. (Of course, I didn`t tell him what I was taking) When he asked me if I was still using O2(from my zydelig encounter) I said when I jump on the trampoline or take a good long walk, he said, you jump on a trampoline? I said yeah, why, shouldn`t I? oh, no, that`s good!, he said. I still muse about his amazement.

Ellieoak profile image
Ellieoak

I used Bendamustine with out any Rituxian. I did that for 6 mo. Had a 3year remission. Now I am on Imbruvica and doing well.

greygirl profile image
greygirl in reply toEllieoak

good, I hope this will happen to me eventually!

Ellieoak profile image
Ellieoak in reply togreygirl

Yes good. It will happen!

greygirl profile image
greygirl in reply toEllieoak

What is your deletion? Did you suffer any side effects? nausea? vomiting? bladder or kidney infection?

greygirl profile image
greygirl in reply toEllieoak

is 6 months the norm? I read 4 months but that was with Rituxan. how many times did you get bendamustine given in each month?

Ellieoak profile image
Ellieoak

Only once a month. But my question for you is why has your Doc decided to put you on that and not on Imbruvica ?

greygirl profile image
greygirl in reply toEllieoak

how many days in a month did you get Bendamustine? As for ibrutinib I couldn`t tolerate it. I`m not doing B yet as I am still W&W.

Ellieoak profile image
Ellieoak in reply togreygirl

Just once every 28 days. It did give me 3 yrs of remission. You could try Ventocolax.

greygirl profile image
greygirl in reply toEllieoak

wow, just once. I could probably handle that. it seems all the new drugs are too hard on me! they keep making them stronger and stronger--probably for the 11 and 17p`s maybe after B he`ll try Vento. I don`t know.

Not what you're looking for?

You may also like...

Bendamustine/Rituxan

I am a 53 year old single male. I was diagnosed with CLL about 10 years ago. In recent months my...
mejiae profile image

Bendamustine & Rituximab

I started round 1 of BR last Tuesday and had a severe reaction to the rituximab on day 1 where I...
elizdonohoe profile image

Rituximab and bendamustine

Hi all fellow cllers. Is anyone else on rituximab and bendamustine at the moment? I just started...
Donegal profile image

Bendamustine with rituximab

my husband was diagnosed with CLL and will be starting on the above agents over the next 6 months....
gohmei profile image

Side Effects of Bendamustine?

I am asking for a friend who has follicular lymphoma and has been W&W for nine years. They start...
KevinCLLITP profile image

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.