Bendustamine - Rituximab poor reaction

[Joffre1]

Has anyone able to advise on a poor reaction to B + R treatment.

As previously posted ,I began treatment on 19th March .AlC at 84 ,began well with Alc dropping to zero within 7 days and felt well. Left Hospital next day returned as temp had risen,placed in ICU and on life support and kidney dyalsis for next 3 days.

Remained in hospital for 7 weeks including rehab.

Causes not conclusive.

Adenovirus,reaction to bendamustine,viralpneumonitis.or possibly all three.

What are my future treatment option ?

Any help.

Regards

Joffre1

[Justasheet1]

Did the Doc put you on Allopurinol before as a prophylactic? Are you in the States? Are you seeing a CLL expert?

I’m glad you’re feeling better.

Jeff

[Joffre1 in reply to Justasheet1]

Hi, yes i did notice Allopurinol on meds sheet.

What Doc said no more Bendustamine. Probably MabThera . This was my first treatment ie the B R.

I should mention that my symptoms show up as Stevens Johnson sydrone.Bu ruled out .ie skin literally falling off, bleeding from the eyes and massive rash all over.

I live in Aussie.

Thans for your response.

Joffre1

[Justasheet1 in reply to Joffre1]

Isn’t Dr Tam in Melbourne? If my memory serves me, that’s who I would try to see.

[Joffre1 in reply to Justasheet1]

Hi,

Yes he is.

I think I will try to get a second opinion before any new treatment.

Still tryiny to to recover from last episode.

Meet with my doc. ON THURSDAY.

will update further.

Thanks

[MsLockYourPosts Passed Volunteer in reply to Joffre1]

MabThera is Rituxan, the R in BR. I hope that you can get in to see Con Tam. He would be up to date on treatment options available.

[Joffre1 in reply to MsLockYourPosts]

Hi MsLock YourPosts

Sorry I have not got back to you.

Still deciding whether to get to Dr Tan.

In the meantime ALC still declining now at 0.9.

He is still considering whether to do a subcutaneous MabThera follow up treatment in the future without the bendustamine.

I read on the Roche Products site this too can some bad responses in some patients . Eg 1 in 10,000 appears like mine.

I am very nervous.

Any suggestions ...I dont think I am up for another similar response to what I had.

In the meantime progressing slowly..nauseous 😭

[MsChief]

I was hospitalized for 3 weeks in 2014 for high temp and neutropenia from B&R. Had to retire from my job as an R.N. Was on Prednisone to keep lymph nodes in check for over a year. Then oncologist said try Ibrutinib which I did at full dose for one week. But had to stop secondary to swollen left hand requiring 9 days in hospital with massive abx and steroid therapy. No treatment for about 6 months - then MD said “You are dying of CLL.” I sawDr. Brown at Dana Farber who said clinical trial but I was not ready so local oncologist and I agreed to try Ibrutinib again but at a low dose with close monitoring. I am presently on Ibrutinib 140mg one capsule 4 days a week, 2 capsules 3 days a week; also take Acyclovir 2 tablets every day and sulfamethoxazole 2 tablets 3 days a week. I switched to a CLL specialist. I am also on IVIG infusions monthly. My numbers remain within normal range. MD may decrease IVIG to every 6 weeks. Prior to infusions I had severe URI’s, now okay on Flonase and ClaritinD prn. I am not RMD but do not wish to tempt fate by increasing Ibrutinib to therapeutic levels. I am 76 and live in the U.S, 11q. Best care in the world! Best wishes to you Joffre1.

[cajunjeff in reply to MsChief]

Wow, what a story. Way to hang in there and fight. I had some tough complications too and like your doctor, mine was a tinkerer who used his instincts to get me on the right mix of meds to get well.

I hope Joffre has someone in his corner like you and I did to figure out meds that work for him.

Joffre, I did not have all the problems you describe and never did Bendustamine. But I did have an allergic reaction to Rituxan. I had hives from hell. They would stop the infusion, give me Benadryl, and then restart the infusion at a slower rate. It just didn’t work, every time they started the infusion I broke out in hives within minutes. They eventually switched to a drug similar to Rituxan and I did well on it. Go figure.

Joffre, I don’t know enough about your condition to have an opinion on your other options. The drug that comes to mind to me is ibrutinib, I would rather it than BR anyway.

[HopeME in reply to MsChief]

Hi MsChief:

I’m curious what clinical trial you opted to pass on at Dana Farber.

Thanks

Mark

[HopeME in reply to MsChief]

Hi MsChief

I went back and looked at your older posts to answer my question. I should have done that first. No need to reply. I’m glad you are doing well on Ibrutinib 5-years out.

Best

Mark

[Farrpottery in reply to MsChief]

Your IVIG is artificially maintaining your compromised immune system. Keep up the IVIG. My hubby’s CLL Oncologist told us this.

Glad you’re doing well on reduced dose of Ibrutinib and Claritin...my hubby on these also....

Blessings

Farrpottery

[Justasheet1 in reply to Farrpottery]

Farpottery,

If she is seeing Dr Brown, she couldn’t be in better hands. No worries there.

Jeff

[MsChief in reply to Farrpottery]

Thank you so much. Stay in touch with this wonderful group. Are you in the U.S.?

[LovecuresCLL in reply to MsChief]

Incredible story. Glad you are doing so well now. Why did your hand swell? Are you on constant medicine for shingles (acyclovir)? What is the reasoning there? Do you know. Yes we are lucky in USA but they want to change that and make us like the rest of the world.

[LovecuresCLL in reply to MsChief]

Also the IVIG? Why in that? Do you have bad skin reactions? Infections? Shingles?

[kathymac52]

My husband had a reaction to BR as well. He was able to do 4 infusions but then was severely neutropenic for 5 months.....no more BR. He is 11Q deleted, unmutated....He is currently on Ibrutinib and it is going well....Best wishes for some answers for you!

[Kat2e]

Yes I had a bad reaction to rituximab during treatments.

When I had my first round of bendustamine rituximab I was okay but it was the next round of treatment that I had such a bad reaction that the doctor summarized that I had a strong allergic reaction to the rituximab. It happened as soon as they started the drip of the rituximab. She had not seen anyone react so badly on it before. We finished the second round (very carefully) and then stopped any future treatments. However my lymphocytes went down to normal and my wbc was very low sitting. My lymph nodes completely disappeared too....at least for a year. Because I didn’t get the 4-6 rounds needed my numbers are creeping back up a little faster than we would like and now 2 years later we are talking about other treatment options.

Not sure that is what you wanted to hear but I thought I would share in case anyone else has the same experience on rituximab that I did. Also, please make sure you get the full round of treatments. My new CLL specialist doesn’t understand why they didn’t continue with more rounds of treatment. She suspects that is why my numbers are climbing so soon.

[MsChief]

Everyone reacts differently to medications of

any kind. I do advocate for second opinions and more than ever I listen to my own body and advocate for myself. To a great extent I feel my life is not necessarily how long will I live but how well. I am 76 and a retired R.N. That helps me decipher medical mumbo jumbo to some extent, while not substituting for my wonderful oncologist. Love to you.💕

[Big_Dee]

Hello Joffre1

I finished all 6 rounds of B+R in April. I too had reaction to Bendustamine. Had itching rash for two days which cleared up in about 1 1/2 weeks. I had hiccups for 1 1/2 days due to IV steroids during treatment. Had really bad acid reflex once. Was hospitalized with 103+ F fever after first day of Bendustamine on round 2. They did a lot of testing, but did not find anything. Finished Rituxan of round two in hospital. My WBC dropped from 197K to 6.2K after first round of treatment. I had Neulasta shots after rounds 2, 3 4 5 and 6 to build up immune system. I developed coping meds which stopped rash, acid reflex and high fevers for rounds 3,4,5 and 6. I am in remission and glad I finished all six rounds although I had my doubts I needed rounds 2,3,4,5 and 6 after great results from round 1. I was high risk at 71 years old, un-mutated with very aggressive CLL. I was 13q deleted at start, now 13q is normal. In the back of my mind going through all this, I knew novel treatment was still out there. I am glad I decided to do B+R and would do same again. Blessings to you going forward, remember there are lot of options.

[Justasheet1]

BigD,

I’m 11q unmutated and 54 months in remission. I will need treatment again in August though. Still, pretty damn good.

Jeff

[Cindi73]

Joffre 1, in 2016 I received the 1 cycle of benamustine. All my blood counts just kept dropping. Ended up in the hospital for a week with neutropenia fever. Never received the rest of treatment. Now on Ibrutinib. I wish you a speedy recovery. Cindi

[scarletnoir]

I had a bad reaction though not comparable to yours - went neutropenic after the first round of BR (delivered on two successive days) and was back in A&E within hours of leaving, with a high temperature... spent 9 days in hospital, initially on the ICU with severe diarrhoea. When I got out, my skin rashes were so bad that the haematologist offered to discontinue treatment (NB - the rashes were very unpleasant, but nowhere near as bad as yours). Decided that as I'd started, I'd finish, so carried on... on one of the other rounds I had an allergic reaction to the rituximab - fixed by nurses with a quick injection of (presumably) adrenalin or the like. I finished with 4 rounds in all, and a complete remission which still lasts nearly 7 years down the line...

So, it was quite a ride but in my case, worth it.... your reaction is clearly a lot worse, so you and your docs need to consider what the alternatives are. Best of luck for a good outcome.

(One more comment - I became allergic to allopurinol - not common, but it happens - so be careful with that, too. It KO'd me completely.)