1st treatment of bendamustine. Side Effects Help

[LarryJM]

1st week after 1st treatment of bendamustine. Is diarrhea normal side effect? Seems like a stomach bug but stool is oily. Thanks for help

[Justasheet1]

Larry,

Yes, I too had that issue with my treatment of Bendamustine eight years ago.

I see that you are young for CLL and in the US, what prompted your choice of bendamustine?

Jeff

[LarryJM in reply to Justasheet1]

Hi Jeff.

Thank You for your response. I was diagnosed with CLL back in 2014. In 2019 I was in partial remission after years of lekuran. Then Covid came and pretty much hunkered down until this year. My quality of life became bad. I had bad night sweats, bad bruising, lack of appetite, confusion, shortness of breath…. Doctor recommended this treatment and I’m glad. The first week after was a difference between night and day. Those symptoms passed and I felt like a new body. I knew that it may be too early for celebration as this weird stomach bug/diarrhea came to be. It’s first treatment of 6. Just wondering what other effects could be in store.

[Justasheet1 in reply to LarryJM]

Larry,

Is your doctor affiliated with a major academic center? Bendamustine just seems like an odd choice to me in the days of small molecules.

Good luck,

Jeff

[LarryJM in reply to Justasheet1]

No. My doctor is part of a medical group in Tijuana Mexico that provide great, well affordable medicine geared primarily to US citizens. I’m truly blessed to be with MediExcel. They are the ones that found out I have CLL. My US health provider totally missed the ball and had me suffer. Thank you

[Keepkicking in reply to LarryJM]

Hi Larry,You should consider getting a second opinion. I believe that Americans can access the Expert Access program for a second opinion at no cost through the CLL Society.

At 53, you have decades to look forward to.

[AussieNeil Partner Administrator in reply to Keepkicking]

I agree and here's the link to the free video consult information: cllsociety.org/programs-and...

Larry,

Given Bendamustine was considered to be inferior to ibrutinib, a small molecule treatment back in 2017, I doubt BR would be recommended unless cost was an issue.

See onclive.com/view/ibrutinib-... plus I seem to recall a more recent study report, confirming that 2017 information.

If cost is an issue, hopefully the Expert Access specialist could recommend some of the available programs to help match or better the cost of BR treatment in Mexico.

Neil

[Big_Dee]

Hello LarryJM

Not much help here, I had rash, hiccups, but not much diarrhea. My work-a-round for infusion reactions was to continue Tylenol, liquid Benadryl for 24 hours after infusion with doctor approval. The extra meds resolved side effects after first two rounds of B+R. Your doctor can probably provide you with working solution. Blessings.

[LarryJM in reply to Big_Dee]

Thank You so much for your response.

Good advice about Bendryl. I will ask my doctor if that will work for me

Larry

[Ballyhoo777]

Hi Larry I did 6 treatment's of Bendumstine in 2008 I was stage 2 only side effects were blisters on my shoulders. Hope you the Very Best..

[LarryJM in reply to Ballyhoo777]

Thank You Very much for your help

Larry

[Nica2019 in reply to Ballyhoo777]

Hi.So are you in remission with BR since 2008?

[Ballyhoo777 in reply to Nica2019]

Yes I am very Blessed.

[Nica2019 in reply to Ballyhoo777]

Truly you are! May your remission will last forever!🙂

[didoroma in reply to Ballyhoo777]

2008 seems a very long jorney ! Not sure B/R was an option back then , not for people in my country anyway . I had B/R in 2018 with some collateral . So far so good , still in remission . All the best .

[Ballyhoo777 in reply to didoroma]

Hi didoroma, yes it is very long ago . I was one of the first to get Bendumstine as it was a single agent Treatment no R .It was an orphan drug is what they told me. Thank you and I hope the very Best for you.

[KevinCLLITP]

I consider bendamustine to be old and barbaric, after many forms of treatment over 10 years, neither of my physicians at a small or large academic medical center would consider usage with me. You need a second opinion, fast, and I would not have a second treatment before i got it.

[LarryJM in reply to KevinCLLITP]

Thank You

[Cheltman]

LarryJM

I would say it’s to do with the Bender as I had similar. The chemo knocks out a lot of your stomachs good flora whilst targeting the bad. It settles down a bit as you progress with treatment. For me it took about 6 months post treatment for things to return to normal. Hang in there it’ll get better and hopefully lead to a good remission length. 👍

[LarryJM in reply to Cheltman]

Thank You so much for this info. It’s put my mind at ease knowing that same side effects happened to others. ♥️

[spi3]

So glad you found a Dr you trust (it takes the fear away when livingwith CLL). May I suggest that you and your Dr (as team) reach out to a CLL Expert to learn about the new immunotherapy generations that are available?

My husband's Dr is a CLL Expert and he stated in my hubby's lifetime they will find a cure.

Did you know President Biden just allocated 3 billion to eradicate cancer? There are many avenues to get medical help and money to find it (I e. Studies that my husband is currently in and it SAVED is life) .

God bless and you will be in my prayers.

[LarryJM in reply to spi3]

Thank You 🙏🏼

[spi3 in reply to LarryJM]

You will be in my prayers and please reach out if you have questions

[Shedman]

Hi Larry. I had Bendamustine + Rituximab (is this your treatment combination?) due to kidney problems.. this was deemed lightest on my kidneys.

Look out for neutropenia - a high risk dip in your neutrophils, with high risk of sepsis..

Is the hospital monitoring full blood count?

Are you monitoring your stats: heart rate, temperature, blood oxygen.. keeping a sharp eye for any change that might indicate infection?

Have you got anyone looking after you, with you, able to get you to hospital in an emergency?

Are you being careful what you eat - a neutropenic diet (one that minimises immune system challenges) is of cooked foods only, nil raw.. a good bet during first few rounds of treatment.. plain cooked rice with a little salt seasoning may help with your poorly gut right now.

Edit: I was very close to sepsis just before round 3 of treatment, leading to IV antibiotics in hospital for a couple of days and a small treatment delay.

Make sure to keep your treatment team informed of your reactions.

Wise to get the free second opinion from the link shared by Neil.

Best of luck.

[LarryJM in reply to Shedman]

Thank You for your help.

🙏🏼

[kathymac52]

B and R caused my husband to develop a second blood cancer called MDS. He beat CLL only to develop this. The medical team believes the chemo caused this. He did go on Ibrutinib and Venteclax and Obinituzimab....got the result of CLL in mininmal residual disease...only to have high risk MDS. B &R caused neutropenia for years......I wish we NEVER had this as a first treatment of CLL but Ibrutinib was not full recommended at that time and was very expensive. He had a stem cell transplant at the end of May 2022, so we are praying that this works.

[Shedman in reply to kathymac52]

Sorry to hear that. I certainly would have preferred a different treatment option. BR felt a tad brutal, but it was The option under my circumstances.

Others here have had one or more BR treatments. We have such heterogeneous presentations/disease.. our consultants are often making complicated assessments with best statistical analysis they can.

I’ll have my fingers crossed that your husbands SCT delivers a long remission.

Did you husband originally have SLL presentation with lyphadenopathy (lumpy lymph nodes before high blood lymphocytes)?

We can be a more variable subset of patients. Special, if you will.

Best wishes.