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

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bendamustine

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

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greygirl
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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
AussieNeilAdministrator in reply to dsspivak2018

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 to dsspivak2018

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 to cllady01

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 to dsspivak2018

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 to Cllcanada

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 to dsspivak2018

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 to Ellieoak

good, I hope this will happen to me eventually!

Ellieoak profile image
Ellieoak in reply to greygirl

Yes good. It will happen!

greygirl profile image
greygirl in reply to Ellieoak

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

greygirl profile image
greygirl in reply to Ellieoak

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 to Ellieoak

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 to greygirl

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

greygirl profile image
greygirl in reply to Ellieoak

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.

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