I came to MD Anderson to take part in the CAR-NK trial. I am a good candidate: in July my marrow involvement was 5%.
Natural Killer cells don’t return to the marrow so CAR-NK doesn’t do much in the marrow. The lymphodepleting chemo given before the CAR-NK infusion might, however, clear the marrow a bit. CLL patients with high marrow involvement are not good candidates for CAR-NK. (All this is my understanding of what the PI said; I am sure I misunderstood parts of what he said as all this is new to me.)
In patients for which CAR-NK works, it does a good job of clearing disease from the lymph nodes. Keep in mind that not many people have received CAR-NK and few of them had CLL so the dataset is tiny.
There’s not much data on how well it works on CLL but here’s the good news: for all disease types there was no CRS or neurotoxicity! There is even an outpatient option! There doesn’t seem to be any GVHD even though the NK come from someone else (cord blood) and they don’t even HLA match.
My hematologist back at home suggested seeing a CLL specialist while at MDA. That was great advice.
The CLL specialist agreed it was time for cellular therapy. I told him I was afraid of CAR-T and HSCT and would try CAR-NK if my marrow involvement was still low. He said OK, let’s do a BMB tomorrow or even this afternoon. Yikes! I hate BMBs.
MD Anderson has an entire BMA clinic. That was Thursday. On Friday I had a PET/CT.
On Monday the first question I asked the CLL specialist was what was my marrow involvement. He circled a number on a printout of the pathology report: 80%. Damn. I said I would switch to CAR-T. Instead of replying he said there are also FISH results. I said not 17p. He said I’m sorry...
Around 76.5% of my cells are missing one copy of TP53, the tumor suppressor gene, which is on the short arm of chromosome 17. I hope the other copy is functional but I read that if you are missing one copy then there is a 90% chance that the second copy is mutated and therefore not functional. I am still waiting on the mutation analysis.
My CLL has become more aggressive.
On Tuesday I met again with the CAR-NK PI. He no longer recommends CAR-NK. Instead he recommends CAR-T or other therapy that the CLL specialist might recommend. Once that clears out the disease he then recommends a HSCT.
I was not surprised he recommended an HSCT as I was sitting in the transplant and cell therapy department. I noticed that those involved in CAR-T prefer CAR-T over HSCT which is not surprising either.
I then spoke to the CLL specialist by phone on Wednesday evening. He also recommends CAR-T followed by HSCT. That really hit me hard. Here was a CAR-T PI recommending HSCT.
The idea, of course, is that if I am lucky enough to get a remission out of CAR-T then it will likely not last long given the del 17p (not to mention unmutated IGHV).
So my wife and I drove thousands of miles to Texas so that I could avoid choosing either CAR-T or HSCT only to be told that I should choose both!
Irony has no bounds.
The photo is from the Leukemia Department on the 8th floor.
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john-doe
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Hello John. I know that view well, I treat at MD Anderson too. I also know the ups and downs and curveballs you describe. I was enrolled and flunked out of two different trials.
I am sorry to read your Cll has gotten more difficult to treat. You are in the right place to treat, for sure.
All I have to offer is to say some people have great success with CarT and/or transplant. I would not think that the fact that your Cll has gotten more challenging doesn’t make your odds any worse with CarT or transplant, because most all the people who have done well with CarT or transplant have very challenging markers as well, otherwise they would be doing other treatments.
As I learned when I failed my second treatment for AHIA, we just have to roll with the punches and play the hand we get dealt. The tone of your post seems more “it is what it is and I’ll deal with it” than “woe is me”. Sounds you are ready to roll up your sleeves and push on, that great. I hope you will let us all know what treatment course you decide upon. I think treating at MD Anderson improves your/our odds greatly. A transplant could even be curative.
Good luck to you and thanks for sharing your story.
They say to be careful what you wish for but this must seem especially hard to take in. Having said that, it’s good to read how well you’re dealing with your news, and very encouraging that you’re under the care of MDA.
In the absence of anything new to add, I just want to echo cajunjeff ’s thoughts and wish you the very best for your latest treatment decision. May it go well. You’re due some good luck now.
Dear John....I know how scarey and frustrating this all is....just breathe and know you are in the right place. Many on this site have found good treatment even with 17p deletion...We are all behind you and send you best wishes on your decision.
What a rocky road you are on, John! I know little about these treatments, and hope I never have to, but i wish you all the good luck in the world and a very successful and happy outcome.Chrisx
What other treatments have you had ?? For 17p the best option is ibrutinib sorry if you have already been on this as it's not clear in your post I have 17p and been on ibrutinib for 4 years still doing great if and when my treatment fails the next line is veneticlax as a pathway to a SCT but that could change as new btk inhibitor are being trialed and developed as we speak loxo which now goes under a different name works even after ibrutinib and other btk inhibitors fail so more options .
Sorry you are going through this. I know what it's like to hear 80%+ BM infiltration and sorry, you are unmutated 17p. I'm not on ibrutinib but at 52, I suspect I'll be in your shoes at some point. Hang in there. You'll get the best care at MDA even if it's not the care plan you were hoping for.
In the past I have avoided this forum for fear it would make me too anxious. I also avoided learning about my disease for the same reason. I am getting better (talk therapy, medication, meditation).
There is a wealth of information on this forum but most of all there are kind, caring people who understand what it means to have CLL. I thank all of you for the support you have given me.
You have chosen you path well. There is another pioneer who faced similar challenges to overcome which you can take encouragement from. DR. Brian Koffman Co-founder and Chief Medical Officer at CllSociety.org. Consider reaching out to cllsociety.org for additional resources.
When faced with mountainous challenges, It is a great confidence to be in the company of the best and to have the map from those who have been there.
Stay focused on this map and the experience of those who's paths are proven.
Hi John,I too know that view well having been diagnosed with 17P/TP53 at MDA 8 years ago.I have had the best of care by both Dr. Susan O’Brian and Dr. Nitin Jain. Ibrutinib worked great for almost 5 years & Venetoclax has been even better. Loxo 305 is showing great promise and other potential miracles are in the pipeline. So my question to you (not knowing your complete medical records) is why CAR-T ? I intend to keep kicking the can down the road for as long as possible and hopefully a cure will be found. A transplant is 63% effective and the life style changes are dramatic.
I’m sure things will work out for you with the new treatment options . Question did you know your mutation status prior to MD Anderson’s visit ? We’re you always unmutated ? And what was your fish test prior to finding out recently that you were 17 P deleted ?
3 years ago when I was diagnosed I also had 5 % involvement mutated fish normal.
Ironjohn, my understanding is that IGHV mutation status does not change. It is the gene mutations/ deletions that might change and for this reason, it is recommended that FISH be repeated before each proposed change in therapy.
There’s been some questions about my CLL history. I can see how some context would be helpful:
IGHV unmutated, 17p del
11/2015 Dx
12/2015 BMB 80-90% marrow involvement, 13q del
02/2016 BR
08/2018 Ibrutinib
07/2019 Venetoclax
08/2019 FISH no deletions
07/2020 BMB 5% marrow involvement
07/2020 Acalabrutinib
03/2021 BMB 80% marrow involvement
03/2021 FISH 17p del (76.5% missing one copy of TP53)
I am still trying to dig up my FISH results from 7/2020 to see if I really did pick up del 17p while on Acalabrutinib. I have periodically stopped treatment to let neutrophils recover and had disease flare. Plus I have been on less then full dose during which disease progressed.
The CLL specialist at MDA said that del 17p is usually picked up from chemo. My uninformed guess is the constant disease flare from taking less than full dose on some days and full dose on others (in hopes of managing neutropenia) produced a lot of CLL cells at least one of which did something nasty (dropped 17p).
Thanks for the update. I’m 42 and have had high risk p53 mutated CLL for 10 years. Ibrutinib for 6 years, Venetoclax for 2 years now. Negative mrd by flow, but 1% by BMB which was taken after being off V for one week due to ITP. ITP cleared and I’m back to full dose but my specialist did bring up SCT due to my age and the p53 and the fact the CLL is so well controlled which he said would improve the SCT odds. I’m still not ready though
I have been on the 8th floor of MD Anderson and because I have CLL, there is no better place to be. They will take such good care of you! I am truly thankful for my care team at MD Anderson. Sending you good thoughts and best wishes!
OK JD, I just read this based on the link you sent me. Thanks. So by inference, The T-cells do return to the marrow. If the CAR-T you choose produces a “decent” remission, and may it be so (!), it may be worth checking to see if you would be a candidate for the CAR-T MR1 Phase 1 trials later this year assuming that remains the timeline. The option of the marrow transplant is always there I suppose but why not see if there is another option? And, if you would have the potential to benefit, the other question I would ask is if they plan to have parallel phase 1 trials in any other locations. I believe that Johns Hopkins was collaborating with Dr. Sewell at Cardiff.
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