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CLL Support Association
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Stem cell transplant

Hello! So I have just had my monthly visit with my CLL haemotologist. Preparing to go onto a trial with Ibrutinib and Venetoclax. Glands swollen and large all over. I am 11q unmutated lymphocytes trending upwards at 50 and last month were 33. Hb going slightly downwards but not bad. Everything else good. She mentioned that they would take tissue for an allogenic stem cell transplant as a plan B if the trial didn’t work. This has seriously freaked me out! Is this standard practice? Felt like the trial would be the answer! Any words of advice would be most welcome.

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I am on the same type of trial I am 17 P deleted and doing well so far . You should do well for many years on the trial . Brian Koffman of CLL Society Is 11 q deleted and been on imbruvica alone for over six years . His website is very good .

There are many other options coming if this trial does not work.

Car-t looks very promising.

See one of my recent past posts that show about 10 new options in process. Many may not go anywhere but it's good to see that there are many approaches being looked at .

Be well,

Hoffy

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I've been on that trial for a year now. I'm also unmutated but "normal" FISH.

After about a week on Ibrutinib, my swollen nodes were hardly visible and after 3 months when they added the Venetoclax, my CLL cells started rapidly killing themselves so that most were gone after the 5 week dosage ramp up. Since about month 5, my blood results have been in normal range and I feel fine, no side effects other than a few mouth ulcers (very painful but I haven't had any more since using Listerine mouthwash twice a day).

We're all different but I've found this very easy and effective. MRD staging for the trail is 3 months away and it'll be interesting to see if the remaining CLL cells in my bone marrow are now gone. Last BMB (about 5 months ago) had them down to 2.5%.

My specialist didn't mention any preparations for a stem cell transplant. If this treatment isn't durable, I expect I'll be looking at different medications as the next option. There's a good chance this should do me for quite a while though - hopefully forever but I'd be happy to re-do this treatment every few years if that was how it worked out.

If you're reasonably healthy apart from CLL, you may find this a pretty easy option. I use the free Medisafe app on my phone to remind me to take those pills every morning and drink plenty of water to flush the meds out. The water is really important when starting Venetoclax because those bad cells die off massively in the first few days.

I'll be interested to hear how you're going.

Graham

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Thank you Graham for your reply. It all sound so very promising!

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Being 11q del and unmutated as well I was wondering why you are starting treatment? Your count does not seem high. I was five years on watch and wait and my counts went up to 460,000 before I started Ibrutinib

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My nodes are very bulky and getting bigger. Also I think the objective of the trial is to determine whether treating people sooner rather than later and frontline with these drugs is better? If that makes sense?

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Hi DebLeeCox,

I'm not medically trained, but IMO your doctor is looking pretty far down the road. Most of us have several treatments long before considering a transplant, due to the high risks and irreversibility of a transplant, GVHD, etc. There are several past postings in the "Related Posts" box at the upper right side of this page (on a computer or at the bottom on a mobile device).

In the last year I have seen videos of CLL experts saying that transplants are being used less often for CLL vs. other Leukemias and Lymphomas most of which have far fewer treatment options than for CLL. As always there may be exceptions and extreme cases of CLL that might not be treatable with drugs.

In my case, I am now 70 years old and have been treated 4 times since diagnosis in March 2008, so my 10th Cancerversary is coming in 3 months. I have had Ritxuan, Idelalisib, Ibrutinib and Venetoclax and am now in Complete Remission Minimal Residual Disease negative. Stopped treatment Sept 2017 and doing great. And I have not had any Chemo treatments yet.

Len

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Hello

I have been on Ibrutinib since May 2015 and am doing well .It hasn't been without a few side effects but there hasn't been anything major .As time is going by I find I am experiencing less side effects .

I am 17 p and this is my first treatment .

My nodes went down very quickly with the Ibrutinib.

If you are offered Ibrutinib and venetaclax I would go for it as I understand you can get amazing results quite quickly .

When I started on the Ibrutinib Venetclax wasn't available to me or I wouldn't have hesitated.

I wish you the very best with the trial .

I am sure you will do well and remember some people don't get any side effects at all .You could be one of those .

Brenda

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