Bendamustine and Rituximab and Low Lymphocyte ... - CLL Support

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Bendamustine and Rituximab and Low Lymphocyte Count

profrich
profrich
33 Replies

After two sessions of B and R my ALC is 0.23. It went as low as 0.03 soon after the first session. I don't know whether such low numbers are good or bad. Does anyone else on B and R have anything to say about this? What number do we want?

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cllady01
cllady01Volunteer

prorich, I can't tell you anything about B+R treatment, however the low lymphocyte levels can be a problem if they are because of infection somewhere in your system. It would be a good idea to talk with your Dr. about those levels and ask if all is okay. Please do contact your Drs team with any questions you have during treatment. These medicines, while being touted as wonderful and so terrific so fast, are quite potent and patients deserve to know what is going on with their situations. Let them know you want to know about whatever questions you may have.

Hopefully, some who have experience with B+R will be on to share with you.

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profrich
profrich
in reply to cllady01

My doctor acts like all that really matters are neutrophils (which were 4.81 when ALC was .23) .

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cllady01
cllady01Volunteer
in reply to profrich

As long as your Dr. is aware of all levels and keeping on top of it, I hope you can relax and further hope the meds do the job they are meant to and you can get back to more mundane worries. It is not easy being in treatment, and your questions are normal. Just let the Dr. do any worrying and see if you can relax some.

The Dr. isn't in your shoes, however, and your job is to stay away from what might cause an infection.

Best wishes for a smooth B+R treatment and a kicking the CLL into a long remission.

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Justasheet1

Sounds very low. As with any chemo, avoid germs, undercooked food or raw vegetables. What did your doctor say?

Your numbers will bounce back but mine were never that low. Mine got to .18 (ALC) after round 5. You’re only at round 2.

Jeff

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profrich

My doctor acts like all that really matters are neutrophils (which were 4.81 when ALC was .23) .

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Justasheet1

He’s got a point. You’re not neutropenic which is what matters. That’s why he went to medical school and I didn’t. Do you trust your doctor and did you get a second opinion before starting treatment?

Jeff

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profrich

Thanks. Yes, I have several opinions.

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profrich

What is your ALC now? After how many sessions? I am trying to figure out what is a desired number. Obviously, our original goal was to lower it.

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Justasheet1

You don’t want to know what my ALC is now. I’m approaching treatment again after almost 5 wonderful years.

However, my ALC was .36 and ANC was 2.11 after 6 rounds.

Jeff

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profrich

Thanks. Good luck with your next treatment.

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profrich
profrich
in reply to profrich

By the way, if you are considering Imbruvica, I recommend Acalabrutinib instead. I had I horrible experience 3 weeks into Imbruvica. Your insurance may cover it if you press them.

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Justasheet1

Thanks for the advice. I’m hoping for a clinical trial to open up using it for relapsed patients. A little birdie told me one is coming in a combo. If not, I hope to hold out for it’s approval. It should be soon also.

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profrich

One guy got acalabrutinib frontline by appealing to his insurance company. You can at least try, especially since you are a relapse case.

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profrich
profrich
in reply to profrich

When I gave the same reply several times, it was to three different people. However, I guess you are right. Since everyone can read all posts, I only needed to give it once.

Best,

Rich

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AdrianUK

My understanding is that in general since before treatment most of our lymphocytes are cll anyway and any healthy ones tend to be swamped out and not very effective that having a low lymphocyte count is an indicator of success. It is also why we take cotrimoxaxole acyclovir and in some cases azithromycin. Because it does mean that we don’t produce that many antibodies (‘made by healthy lymphocytes). For sure you need your antibody levels monitored and if they drop and you are getting infections IVIG (replacement therapy) may be indicated.

As always do discuss your personal

Situation with your doctors. .

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profrich
profrich
in reply to AdrianUK

My doctor acts like you are okay as long as your neutrophils are high.

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AdrianUK
AdrianUK
in reply to profrich

Well we have immune compromise from the day we are diagnosed. And some experts believe that you should be on co trimoxazole while your CD4 lymphocytes are low, and aciclovir and if needed azithromycin (for prevention of respiratory tract infections).

But for sure lowered neutrophils become more or a concern especially for bacterial infections.

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Jem67

I finished 6 rounds of BR just over a month ago. From the 2nd round onwards my ALC has been 0.20 to 0.40 and is now 0.24. Saw my consultant last week and he wasn't concerned and said would gradually come up.

However, neutrophils below 1.00 delayed 5th round treatment. They are now just over 1.00. I feel very well and have not had any infections, apart from a nasty cough which has now gone.

Good luck with your treatment. Joy

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JeannineMarie

So having finished 6 rounds of BR in February I can tell you my lymphs are in the cellar. Just came through another bout with pneumonia and it really kicked my butt. I did see my PCP and ONC. Have a follow up with the PCP in a couple days and another chest x-ray. I watch my numbers but follow the medical advice I am given. If you are not 100% confident in your dr and don't trust his or her opinion I would recommend a second opinion.

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Benny12

Hello Profich,

After 4 cycles of FCR in 2010, I started Bendamustine/ Rituximab in May 2013.

After just 1 cycle my ALC was 0.6. (WBC 2.1)My consultant thought this was good so I had no more cycles until June 2016 when my ALC had risen to 83. After another cycle of B & R my ALC was 1.1 (WBC 4.3) so again I stopped. My ALC rose to 78 by April 19.

My ALCs were not quite as low as yours but your doctor doesn’t think it’s a problem so don’t worry.

Good luck

Benny

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AnnieZ102

I agree with AdrianUK. Isn't the whole point of chemo to destroy our abnormal lymphocytes?

I'm on a different treatment regime....C/O, and after the first session my lymphocytes plummeted. I couldn't believe how fast it worked! I'm in cycle 4 now, and they hover between 0.5 and 1. All of my other cells have remained within normal range, including neutrophils.

I'm on various prophylactic drugs, and have been coping pretty well. My haematologist is very happy with progress so far.

Best to talk it over with your doctor, for peace of mind. Best of luck!

Anne.

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AdrianUK
AdrianUK
in reply to Hidden

Not true actually. The newer drugs also kill all lymphocytes and can even induce neutropenia and cause infections. Perhaps less frequently than chemo but we should be under no illusion since the newer drugs do at least initially make our immunity even worse.

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Justasheet1

Adrian,

I thought that BTK inhibitors block the signaling pathway that allows the CLL cells from outliving the normal B cells.

What is the mechanism of destruction? I guess I don’t actually know.

Jeff

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profrich

I do know Ibrutinib can lower platelets, but acalabrutinib is not supposed to do that, at least not much.

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Justasheet1

Rich,

I agree. Seems the second generation BTK inhibitors are targeted. Let’s hope that the third generation drugs come with a cure.

Jeff

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profrich

I looked at one of the reports. Ibrutinib inhibits way more pathways than acalabrutinib. However, since acalabrutinib inhibits BTK, it seems it can still affect heart rhythm. I would make sure not to take any other medicine (e.g. amitryptiline, antihistimines) while on acalabrutinib.

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Big_Dee

Hello profrich

I suspect my doctor would agree with your doctor. At end of 2nd cycle of B+R, I was at Absolute Neutrophils - 1.65 and Absolute Lymphocyte - 1.46. I had Neulasta shots starting after 2nd cycle of B+R. I completed all 6 cycles and now have blood labs in normal range. hang in there, blessings.

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Smakwater

profrich,

There is an expected trend at each stage of treatment that your doctor is measuring based on trial data and treatment guidelines. Although some results will be better or less than expected, it may be acceptable given other aspects of your health and blood counts.

It is common for ALC to drop as the drugs are causing cell death, however, low neutrophils “≤ 1.5” is a primary concern for infection risk.

Avoid conditions that present risks for infection, and consider discussing what options your doctor will offer in the event your neutrophil count becomes critically low, e.g., G-CSF injection, or postponing treatment.

JM

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attarintiki

Soon after two cycles of BR my lymphocytes and neutrophils count went down. My Onco

gave me Nupogen to stimulate Neutrophils. But my Eosinophils count gone up to 46.

I went through almost all investigations to findout the reason for increased number of Eosinophils. Besides I have developed skin itch mainly over face neck and shoulders. After a skin Biopsy the Dermatologist diagnosed that I have Eosinophilic Cellulitis (Ofuji Foliculittis Disease) as part of reaction to Bendamustine. Eventually my further BR Cycles were discontinued. Currently I am in short remission. Once it relapses, my Onco suggest that I should l start a non chemo drugs either Ibrutunib or other. If my experience can give you some insight. Please do have a second opinion from a good Haemato and Onco or any CLL expert.

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profrich

Thanks. I would suggest acalabrutinib next. Press your insurance company.

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attarintiki

Forgot to mention that 3wks back i had HerpesZ and treated with Valocyclovir and Zovirax cream. I was supposed to take antibiotics and anti virals during chemo. But my onco did not advised me

This resulted me infected with HZ. Please consult your doctor about taking antibiotics and anti virals

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