R-CHOP Treatment

[scorpio74944]

After FCR chemo 15 years ago and numerous oral medications since I am in chemo again. They tried a milder chemo to reduce my lymph nodes (they were huge). Some success, but not as much as I needed. So now I've had one round of R-CHOP. All that it has done for me so far is take my wbc's to 0.4. I'm managing to stay clear of infection up to this point, but I still have a lot of back pain. Wondering if anyone here has experienced this treatment and how they did on it. I'm not doing well mentally, I feel like I might finally be losing the fight.

[AussieNeil Administrator]

I'm sorry that you are having R-CHOP after FCR, ibrutinib and venetoclax. R-CHOP is rarely used for CLL, but when you have CLL, is more often used for treating an aggressive form of CLL - Richter's Transformation (Syndrome), for which it can be curable. You'll find some previous posts on R-CHOP in the Related Posts section, which you'll find to the right of this post when viewing it on a laptop or desktop computer, otherwise, look below your post. Chris Dwyer, (CLLCanada) whom I expect you remember for his prolific helpful postings when you joined, had R-CHOP when he had Richter's Transformation, which it cured.

That your WBC has dropped to 0.4 shows that the R-CHOP has dealt with the CLL in your blood, but you'll need more treatments to reduce the CLL infiltration in your nodes and bone marrow. Good to hear that you are keeping infections at bay. With a WBC of 0.4, you must have stage 4 neutropenia, (a neutrophil count of under 0.5), so you'll need to be aware of how to manage your risk of infection per the section at the end of this post: healthunlocked.com/cllsuppo...

It's unusual in the USA to go back to older chemo treatments after you've had FCR, ibrutinib and venetoclax. It's more usual to find a suitable clinical trial, for which you have more choices compared to members who live in other countries. I appreciate that distance from a clinical trial centre can rule clinical trials out though. You are relatively young for someone with CLL, so have the benefit of youth to get you through R-CHOP. Has your specialist talked to you about the option of being cured of your CLL, by having a bone marrow transplant after finishing R-CHOP? That or CAR-T would, I think be options that your specialist should be exploring with you, or possibly pirtobrutinib - a non-covalently bonding BTKi that should still work on your CLL after ibrutinib treatment. (Sometimes venetoclax treatment can again make CLL responsive to ibrutinib, or the newer covalent bonding BKTi drugs acalabrutinib or zanubrutinib, which are more tolerable.) These or other options through clinical trials would, I expect, be raised if you had a free video consultation with a CLL specialist through the CLL Society's Expert Access program, but perhaps you've already used that option?

cllsociety.wpengine.com/pro...

You do have youth on your side, so take heart that you do have further options to banish CLL for at least a while and possibly permanently.

Neil

[scorpio74944 in reply to AussieNeil]

Thank you Neil. Doc briefly mentioned bone marrow transplant options down the road. He said there is a newly approved oral med that we will try once the nodes shrink (he didn't say what). I appreciate the link for CLL Society, I was not aware of it. Your reply was very encouraging.

[whitelily22 in reply to AussieNeil]

I wish I had this opportunity as well but I do not qualify to participate in the Expert Access™ Program, as you must reside in the United States

[cajunjeff]

Neil gave you some great advice, Scorpio. Hang in there, keep your chin up. You need to push forward with the R-CHOP treatment. Your doctors must think it has a good chance to work or they would not have prescribed it for you. I hope you will update us on how you are doing.

[scorpio74944 in reply to cajunjeff]

I will keep updating cajunjeff. I appreciate your words of encouragement, I needed that!

[Stacky66]

You can do this! Good luck

[Mandy56]

you can do this Scorpio. Stay strong. We’re all

willing you on and wishing you well. Xx

[gardener58]

Although we all know it's difficult, try to stay strong. You have friends here who understand what you're feeling and are here for you.

Keep us informed so we can help.

[Stavrou1]

I am so sorry to hear your really going through it . It's hard There is good advice given . Thinking of you and hope things get better. Hang in there , not easy. Keep us posted . Take care . Sending you 🫂 .

[spi3]

I'm adding you in my prayers. I also know someone who's Dr had him do Chemo again (because he had it before) - then the Dr put him on venetoclax. Curious is your Dr a CLL Expert and up on the latest treatments? My friend's Dr is a CLL Dr but I dont think he was not up on the latest information....

[scorpio74944 in reply to spi3]

He is not a CLL specialist, however I believe he is very up to date on things. We have discussed possible future treatment options and the newest approved meds on the market. But if need be I will seek a second opinion. And thank you for your prayers! I can sure use them.

[spi3]

Please use the site Neil shared with you - it will be very helpful in your decision-

[Poodle2]

Hang in there, the beginning of a treatment takes its toll on us - physically - while we are waiting and pushing for our bone marrow to be cleared of the CLL pesky cells but also mentally - it's hard to keep going and going...sending you all the strength you will need to get through this 💪 💙 ❤️ 🙏🏻

[whitelily22]

Dear Scorpio, you are young and have already overcome this once. Remember that there is continuous progress in this field. Don't be discouraged even if it's hard now. I am sending you warm thoughts and strength from here in Iceland, where I live 🥰 Hilda

[flipperj]

Better options are becoming available in clinical trials so please hang in there. I can relate to your situation feeling one is losing the battle. I was severely cachexic and failing my last line of approved therapy at one point, and somehow managed to turn it around with the help of some providing a different perspective

Your treatment regime seems to be unusual. Did your doctor ever mention transformation? Have you ever experienced a flare up while interrupting or coming off BTK therapy?

I echo the recommendation to seek a second opinion from one of the CLL research centers. Like you, I have been at this a while and have learned some hard lessons. I will no longer change a current treatment or begin a new one without consulting with at least two CLL researchers. Second opinions are the norm with most cancer but much more important with ours as CLL tends to be more heterogeneous and the treatment more nuanced.

[Barrystreets]

I am currently on day 3 after first r-chop chemo session. I have never had this much bone pain in my entire life. It’s the worst pain imaginable. Will it pass? No type of pain meds seem to do the trick at all.