Rituximab and bendamustine

[Donegal]

Hi all fellow cllers.

Is anyone else on rituximab and bendamustine at the moment? I just started last Thursday- a half dose of each of them on 2 successive days. Feeling totally steamrollered for Christmas now!! I did have fludarabine and rituximab nearly 5 years ago with great results. Has anyone else had this regime and how did they find it and how long did it last? A feel well Christmas and healthy new year to all

[wroxham-gb]

Hi Donegal

Finished BR late August and only seemed to suffer for 3/4days and even then I could carry on as usual, ie cooking, washing up etc.

I hope by now you are feeling much better and are able to enjoy Christmas.

I wish you well and a Happy Christmas and a even better New Year.

Sue

[Donegal in reply to wroxham-gb]

Thanks Sue. Was BR your first treatment? 6 sessions? Good to hear you took it so well. Happy and healthy new year to you.

Deenie

[wroxham-gb in reply to Donegal]

My body couldn't handle fcr so the treatment was changed to BR.

Pleased you are feeling better.

Sue

[Justasheet1]

Each tx for me took longer to bounce back from. Never more than 3-4 days. Drink LOTS and LOTS of water.

Jeff

[Donegal in reply to Justasheet1]

Hi Jeff. Good advice to drink lots and lots of water. Was on a drip for 4 days after treatment and drank a great deal of water too. I do see the sense of it ,inconvenient as it may be!! Thanks. Is it long since you had treatment and how are you now?

Deenie

[Chriskw68]

Yes my husband is now doing BR. Just got done with second round. This time was a little harder for him. He had a reaction to the rituxan. Which was weird because 7 years ago her did 6 rounds of Fcr with no problem and had great numbers.

[Donegal in reply to Chriskw68]

Hi Chris. Thanks for post. Good to hear of others in the same boat!! Is he also on a cocktail of pills between treatments?

Regards

Deenie

[Chriskw68 in reply to Donegal]

Hello and yes he takes a anti viral and a antibiotic. He will be taking those during the whole time on treatment.☺

[Eagle5327]

I, too, just finished my BR treatment this past August. I experienced more fatigue, though. After the first round I was pretty wiped out for about a week. Like Justasheet1, it seemed like every treatment took longer to recover from than the previous one. After my sixth round I was wiped out for about three weeks or so.

Four months later, I'm in a very good partial remission and feel terrific. Hang in there!

Geoff

[Donegal in reply to Eagle5327]

Hi Geoff. Good to hear that you're feeling so well. I'll certainly hang in there for the next 5 treatments. It was beginning to feel like an insurmountable mountain!! Raise a glass to good health in the new year!

Deenie

[Chriskw68 in reply to Eagle5327]

Thank you. I hope he manages better the next round

[Janetfld]

I have had BR twice. The first time I was treated once a month for six months. Remission lasted just about three years. I just finished another round last October. I think the Neulasta shot I received at the end of each treatment was the hardest part. This shot made me feel like I was coming down with the flu. After three or four days, I was back on my feet. I think this is a very easy chemo to do. I wish you the very best.

[Donegal in reply to Janetfld]

Many thanks. Beginning to feel better now. Will enquire if I get neulasta after treatment next time. Have you had fludarabine before theBR? The haematologist did say that he hoped I'd get another good 3 years from the BR. A healthy new year to you

[Janetfld in reply to Donegal]

I was very luck to switch to a doctor before my first chemo treatment began who felt the best treatment for cll was the treatment that did the least damage to your immune system. While I know FCR is considered the gold standard, it can be very hard on your immune system. We are already in trouble with our immune system with this disease. So over ten years ago he started me out with the least damaging treatment as possible. I might be what you call a heavily treated patient, but I still have an immune system that can still fight off infections. Of course I am cautious, I try not to be around sick people and I get my flu shot. But I am still here and I have not missed my life by being sick. I am very thankful my chemo treatments have not been hard. This will be a little bump in the road but stay strong. You have got this!

[holly2 in reply to Janetfld]

I know it is a year since you posted this message but I just wanted to write and let you know how useful it has been to me. I am sitting hear desperately trying to weigh up the pros and cons of going for FCR or BR. My consultant has suggested BR but I had the option of FCR too. Your comment about using the least damaging treatment and your success with two lots of BR has helped me decided to go down this route too. So thanks very much and I hope you continue to do well in remission. Holly.

[Jlteears in reply to holly2]

Good afternoon. This is the first time I m writing. I too need to decide between FCR and BR. Weighing options....

[holly2 in reply to Jlteears]

Hello Jlteears, in the end I changed my mind and decided on FCR. I have now had 1 treatment and have tolerated it well. It is a very difficult thing to advise others though as we are all so different. In the end I decided I wanted to give myself the best chances of a good remission and I found some suggestions that FCR may offer a longer remission time than BR and this swayed my decision. You might find it useful to put a general post on this forum so others see it and respond to you. All the best at this difficult time, Holly.

[attarintiki]

I have received 2 cycles of BR (Jan&Feb 2019). The 1st cycle was uneventful. But soon after second cycle I have developed severe side effects skin itch (Eosinophilic Folliculitis) My further BR cycles were discontinued. However with the 2 cycles I am having good remission from CLL (time being) I do not know how long. But the bad news is that I am coping with the side effect of BR - Skin itch till today.. BR acts in difference on different people. You may well tolerate the BR with no side effects. All the best

[polly49 in reply to attarintiki]

I have only had one cycle of Bendamustine and had a bad reaction to this, the itching was and still is driving me mad. The good news is just after the one cycle the wbc is considerably lower

[attarintiki in reply to polly49]

Hi Polly49

I am happy to know your remission after one BR cycle. But sorry to know that you also in similar situation like me with skin itch. In spite of several consultations and repeated use of antihistamines and steroid topical creams I continue having skin itch/bumps especially over my face and neck resulting in sleepless nights and discomfort.

Please share your experiences with the itch ? Have you consulted Dermatologists ? if so what is the treatment line they prescribed to you ?

Thanks in advance

[polly49 in reply to attarintiki]

Hi Attarintiki thank you for the reply

I went to my gp last Thursday and she phoned the hospital and I went to the chemo ward last Friday and saw the Dr there

I have Betamethhasone cream

Prednisone for 5days

Chlorphenamine an anti histamine

Lansoprazole

I am supposed to be having my 2nd cycle next Wednesday, having my blood done on Monday so will know then

The itching was all over except for the soles of my feet. It was very uncomfortable and the itching was continuous. It's still not gone but not as bad as it was

[attarintiki in reply to polly49]

Hello polly49

Immensely thanking you for the prompt response. I am also using the same regime

with ELOCOME cream+ATARAX Tabs + Dextryl Gel body moisture. Coping with it.

Pray and wish you an uneventful infusion of BR second cycle. Best of luck/

Please keep me inform the developments. Thanks again my friend.

[polly49 in reply to attarintiki]

Thank you, will let you know next week

Have a good evening my friend

[polly49 in reply to attarintiki]

Hi, managed to get through the treatment on Wednesday but had to go to a+e that evening with a high temperature while shivering so had 3 days in hospital. I'm home now

Hope you are well