Thoughts on Car-T?

[zentangle]

Hi Everyone,

I haven't been here for years, but thought I'd jump on to say hello and ask what people's vibe is regarding Car-T and the news that it is to be used in Newcastle for ALL in children soon.

Love and regards to all,

Zentangle

(Three years post ASCT for CLL/MCL hybrid)

[Cllcanada Top Poster CURE Hero]

We missed you Zentangle... I wondered what happened, but have sadly learned not to ask...

CART has toxicity issues in CLL, and it is hard to control. I lost a friend Lisa in a clinical trial a few months ago, which underlined this.

If the safety profile can be improved, and the price drops, it could replace HSCT in perhaps 10 years in CLL, but it is certainly gaining a very valuable position in treating pediatric leukemias...

~chris

[zentangle in reply to Cllcanada]

Thanks for your kind words, Chris. Speaking selfishly, I might buy ten years - three-five more post SCT and then Ibrutinib! So, here’s hoping, for us all!

[Jm954 Administrator]

It's a start for this treatment and great news I think!

[Justasheet1]

Zentangle,

Where you been? I hope this helps to answer your question a little.

onclive.com/peer-exchange/c...

Jeff

[Bubnojay]

Hi you

We have missed you. Some evenings I sit and wonder how the folk who were here when we were a much smaller community are faring.

Just hope you are ok

Huge hugs and best wishes

Bubnjay1

[zentangle in reply to Bubnojay]

Hey! Thanks for your kind words. I’ve been out living my life, but I’ll be back when the time is right. Keep well!

[lankisterguy Volunteer]

Hi Zentangle,

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Welcome back, a few of us regulars have changed our online names since you were last here.

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Regarding CAR-T, the research doctors seem to be focusing on trials in other NHLs since the results on those are more consistent and predictable than for CLL. The theory I have read, explains that we CLL patients have T cells that are "exhausted" and do not respond in similar ways from patient to patient, and a few patients like Dr. Brian Koffman get great results, while others get excessive or inadequate results.

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You may want to read Dr. Koffman's blog about his CAR-T journey:

cllsociety.org/car-t-blog/

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Len

[PaulaS Volunteer]

Hi Zentangle,

Great to hear from you again. As others have already said, we miss you...

I must admit that I feel very wary of Car-T therapy, having followed the story of Lisa (who Chris mentioned). She was a CLL patient who died a few months ago while having that treatment.

It's been successful for others though, and the treatment of children is a very different matter. A lot of progress is being made, and more is being learnt all the time, about ways to make these new treatments safer.

If you haven't already seen Dr Brian Koffman's site where he talks about his Car-T, here is the link:

cllsociety.org/car-t-and-ot...

I'm sure lots of us would like to hear more of your transplant story, with whatever ups and downs you've been through.

Best wishes,

Paula

P.S. Just noticed Len had already given link to Brian Koffmans site. Apologies for the duplication.

[zentangle in reply to PaulaS]

Hi Paula,

Great to touch base. I’m glad to say there isn’t much of a story with me. Almost three years on the other side and no sign of relapse. Doctors give me six to eight years before I need more treatment. (For those of you who don’t know me, I have a hybrid CLL/MCL and was treated for the MCL with an autologous SCT May 2016.) Great to see old faces here.

Best Wishes

Steve

[PaulaS Volunteer in reply to zentangle]

I'm so glad you're doing well, Steve. I still remember the shock of you finding out you didn't just have ordinary CLL/SLL, and how the MCL changed things... All thanks to getting a second opinion...

Yes most of the old faces are still here.

Take care,

Paula.

[canadagoose]

I did CAR-T mid 2016. Came out of remission mid 2018. It was not a joy ride but I had few other choices at the time. Seemed like a good option and despite the short remission, would do it again. We have an incurable cancer so anything and everything that works is worth a try. If your choice is dying and doing nothing or taking a chance that the treatment might kill, there isn’t much of a choice. I know at some point it won’t be worth the gamble but I’m not there yet. Also someone has to do clinical trials so why not. I have made it 14 years with a disease that can be aggressive.

[profrich in reply to canadagoose]

What disease did you have when you did CAR T. What are you using now?

Thanks,

Rich

[canadagoose in reply to profrich]

I have CLL. The CAR-T lasted for 2 years and am now on venetoclax. Had 6 rounds of rituxin at the beginning. I am also getting IVIG monthly. My bloods look great. I feel good.

[profrich in reply to canadagoose]

I have CLL and my blood work is very good also after 6 weeks on venetoclax. However, a cat scan revealed a large mass of lymph nodes and a number of small enlarged ones by my kidney. We fear Richter's and are waiting for the result of a biopsy. That is why I am considering CAR-T. Would you recommend it? Did you take any chemo before it?

Thanks,

Rich

[Hoffy]

CLL Society web site has a lot of info on CAR-T . Car-NK is another possible option as well. It seems to have less side effects and toxicity ,

Be well,

Hoffy

[Peggy4]

Great to hear from you. So glad to hear you’re doing well.

Peggy 😀