cll w/ a twist - Stem cell

[chemosuxs]

okay - been awhile - 8 years of cll without any great remission so i went to MSK since i hear good things. right off the bat they did a genetic test and found i have a mutated tp53 gene which basically keeps the medicine from working. I'm on venetoclax w/ rhituxin and have my levels good for first time in over a year (3 months at sloan). Just had a bone marrow test yesterday so no results yet. they feel i'm going to have to do the stem cell transplant. Anyone go through this???

[Lola69]

Hello. Don’t know your age but stem cell can be curative. They tested my bro to see if he is a match for me. Unfortunately he’s only 20%. I need at least 100%. My kids are 50% match but not good enough and in all honesty afraid of this procedure. good luck and know u are not alone. Ventoklexa is a wonderful drug! have they found a match?

[chemosuxs in reply to Lola69]

52. I have 2 brothers that just sent in the swab test a few days ago. Waiting now.

[Spacee in reply to Lola69]

Learned from you too. So wish you could find a match. I do not think Hubby would be able to find a match either. Two sisters are unwell. 3 sons would be the only hope. And I just feel it is unlikely.

Hope the meds work well for you. And hope good results for you Chemosuxs. Like your name.

Linda.

[Lola69 in reply to Spacee]

Our children are automatically a 50% chance at a match but it’s not enough

[DriedSeaweed in reply to Lola69]

Looks like serious research going into half matches: hopkinsmedicine.org/kimmel_...

"This procedure also greatly expands the potential donor pool, making more patients eligible for the transplant. Since developing the treatment more than a decade ago, Kimmel Cancer Center experts have performed more than 600 half-matched transplants for adult and pediatric leukemia and lymphoma. Johns Hopkins is currently the only center offering this type of transplantation for chronic leukemias.."

One problem not discussed my mom (she was a RN in BMT in the early days) said is that it turns out sometimes the kids are really someone elses kids.. someone else is the daddy. They just say not a match. Probably because they do not want to cause more distress for family and maybe HIPAA.

[Lola69 in reply to DriedSeaweed]

Hello Dried! My friend in Italy was the match for her 14 year old child. His chronic myeloid leukaemia turned acute. Unfortunately the child passed away after 1 year and spent most of his time in the hospital. So my bro is not my bro? He’s only 20%

[DriedSeaweed in reply to Lola69]

Dunno.

The half-match research makes things more hopeful though. Hopefully it will get more successful as the years go by so matches can be more flexible.

[Spacee]

Oh, so glad you got better treatment!! Hubby has the same mutation, so we have learned from you. Thank you for posting!! And we wish you well on this journey we did not choose!

Linda

[closh]

Both Venetoclax and Ibrutinib (and a few other drugs) work for TP53 mutated patients as they don't use this pathway to kill off the nasty cells. Has the Venetoclax stopped working? If not, I'd be wondering whether there is a need to undergo a transplant at the moment or whether I could try other drug combinations first.

Graham

[chemosuxs in reply to closh]

I did 4 other combos...plus the veneroclax which is working right now ...they took a bm sample to see just how well....

[closh in reply to chemosuxs]

Wow - you have some seriously tough CLL cells! If you're in the US, the INVAC1 vaccine trial could be a different approach?

[MsLockYourPosts Passed Volunteer]

Before considering a stem cell transplant I would definitely get a second, and probably third opinion from specialists in transplantation, not just a CLL. For a small number of CLL patients it is considered to be the right option. That usually has to do with age (younger patients), or having run out of other options.

You do not need a match from a family member. When my cousin had his transplant his identical twin was ruled out as being too close a match. He was fortunate that his other brother was a match, but if you have no sibling match a search is made on the international registry. Many matches for US patients come from Germany, as a large percent of their citizens are on the registry.

Different centers look for different numbers of matches. 12 of 12 or 10 of 10 are often the goal, but less identical matches are often successful. Haploidentical matches - 50%, usually between parent and child, are becoming more common, as are cord blood transplants, using blood from umbilical cords if no match is found.

bethematch.org/, based in the US, and anthonynolan.org/, based in the UK, are great resources. I don't know about other countries, but have known people who's matches have come from Spain, Israel, and Holland, as well as Germany. All of these countries enter their data into an international data base. One friend volunteered to transport stem cells. His most interesting trip took him from Ohio, USA, where the donor was, to Argentina.

[HB50]

Hi Chemosuxs,

I was on Venclexta & Rituximab (3rd line of treatment), then had an Allogeneic stem cell transplant. My one year post transplant is coming up on November 16. If you have any questions please feel free to reach out to me in a private chat.

Regards,

Mark

[Splashes]

Please get a second or third opinion. I am P53, on ibutrinib with normal blood counts, no signs of CLL, and no side effects. Was told a year ago when ibutrinib stops working I could die in 3 weeks. We need a plan B which was a bone marrow transplant. Went for a second opinion and that oncologist said, NO WAY!!! You could die in 3 weeks from a transplant. Went for a third opinion and learned a new pill had been approved by FDA to work when the ibutrinib stops. And then another pill has been approved when that pill stops. New discoveries every day. Went back to first doctor who had left the practice. Her replacement read my chart and said, "I can't believe what I am reading. You should never have been advised to have a transplant." We are all different, so I hesitate influencing you the wrong way. Just go for another opinion. Not all oncologists think alike.

[lankisterguy Volunteer]

Hi chemosuxs,

As other replies suggest, you may want to get a 2nd opinion, since MSK ( Memorial Sloan Kettering Hospital has 8 locations in the Metro NY area mskcc.org/locations ) - has some clinical trials around CAR-T (Chimeric Antigen Receptor) and SCTs (Stem Cell Transplant - the modern version of a Bone Marrow Transplant) there may be some bias there.

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You could try Dr. Nicole Lamanna at Columbia NY Presbyterian since she was at MSK Manhattan, until a few years ago and is well versed in the pros & cons. nyp.org/physician/nlamanna

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Also, there is an upcoming meeting of the CLL Society NYC Support Group on Nov. 18 where Dr. Brian Koffman is the VIP guest- he had CAR-T therapy earlier this year and is well versed on the options and the doctors you may want to consult.

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See: cllsociety.org/event/new-yo...

New York City CLL Support Group

November 18 @ 3:00 pm - 5:00 pm

The CLL Society invites you to our CLL patient and caregiver support group sponsored by the CLL Society Support & Education Network.

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This month we are very excited and pleased to welcome Dr. Brian Koffman, founder and medical director of the CLL Society. Dr. Koffman is also a 12-year CLL survivor who recently and successfully underwent CAR-T therapy and at present is MRD undetectable. Reaching over 20,000 readers, Dr. Koffman’s CLL-specific blog (and his new CAR-T blog, which describes in detail his harrowing journey with this relatively new treatment) are quintessential reads for anyone touched by this disease. Dr. Koffman will be sharing with us his vast experience as a patient, physician and CLL advocate. Space is limited, so please RSVP as soon as possible.

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We meet at 1305 York Ave, New York, NY

(South West corner of 70th St. & York Avenue in Manhattan, look for the glass building.)

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Len

[chemosuxs]

I’m also tired after 8 years. My understanding of the stem cell is that it’ll kill me or cure me... either way I’d be done with this so why not give it a shot. I know them meds I’m on now didn’t really exist when I was first diagnosed so just staying in the game is key to finding a treatment that works for you. Stem cell has worked for many people so it’s not like I’d be jumping off a bridge. We will see. Maybe my bm sample will be clean and this is all mute.

[lankisterguy Volunteer]

You may want to read Dr. Koffman's blog and check the statistics on SCTs. I think that around 30% are cured, 30% get GVHD (Graft vs. Host Disease), 30% fail the transplant (Dr. Koffman is in that category) and 10% die during the process.

Len

[17Pisme]

I am a 17P/TP53 that recently (within the last 4 months) switched from Ibrutinib (4 years of treatment) to Venetoclax/Rituxin due to the Ibrutinib running out of gas. My Dr. at MDA sent me to the Stem Cell Dept. for consultation and initiation of the process. 3 worldwide donors were found to be 100% (10 out of 10) matches. The Stem Cell folks were excited but as I dug in to the most recent research and talked to others who had experienced Stem Cell Replantation (patients & effected family) I wasn't so excited for a number of reasons. First, 63% success with SCR in my opinion is very close to 50%. I don't like those odds especially since the latest numbers from Venetoclax (after 28 months) indicate an 84% MRD- for folks like me and if one digs deep into the 16% failure you find patients with prior chemo treatment as well as other physical ailments. My decision is basically to keep kicking this can down the road for as long as I can (remember I got 4 years out of Ibrutinib) until the next "bigger/better" comes through the pipeline. I have great faith that CAR-T will be perfected in that time frame.

Everyone's decision is a personal matter and eventually SCR might be my only hope but I'm at peace with my decision. SCR isn't just about our suffering for 6 months to a year but the shared agony that our families must go through. Good luck with your decision and God Bless.

Dennis

[HB50]

I don't disagree with a lot that has been written, there are many factors that go into the decision to have a stem cell transplant. For example car-t is not available in Canada (they are just in the process of ramping up trials for CLL) so the cost of going to the U.S. would have been close to breaking the bank for us, as well as not being close to home for support was another factor that was considered. Also transplant technically, at least what I had read, carried better odds for success than CAR-T (although as CAR-T matures I'm guessing that may shift, assuming it has not already)

In addition, although I have played the chess game with treatments, I started with FCR, and since then I have been fortunate that when I relapsed a new drug was available - first relapse I was on Ibrutinib, then second relapse was Venclexta (and I added Rituximab a few months after starting V). However after my second relapse (3 weeks in the hospital, a WBC around 400, and my nodes growing like the Incredible Hulk), I came to terms with the fact I had a stubborn/agressive version of CLL (including 17p) and that within literally a few days my disease almost went out of control. I also understood that statistically I was pretty much guaranteed to relapse on Venclexta at some point (If I recall statistics for 17p is approx. 18 months).

So then I was left with a few things to consider - my second treatment Ibrutinib barely lasted a little over a year and I relapsed hard, for best transplant (and CAR-T) results your disease needs to be under some control, age is a factor and I'm still under 55, and finally there was no guarantee next time I relapsed we were going to be able to control it & also whether that control would last long enough to find a donor match, etc..So I had to decide when I was feeling well and my disease under some control (my BMB was approx 30% CLL prior to transplant) to proceed with something that had no guarantees of success of any kind, and a mortality rate not to be taken lightly.

Although I'm in remission, currently MRD Negative, have been very fortunate to experience little GVHD, and have been off CLL treatment a few days shy of year, my chess game does continue and I do consider next steps if & when I should need it...how would I get my disease back under some control (perhaps Venclexta & Rituximab again as I stopped treatment as opposed to relapsing on it) in order to get to a second transplant or CAR-T if its available.

But at the very least , even if it turns out to be a shorter time than we hope, I have had an opportunity to ponder the "cure" word!!

Mark

[Lola69 in reply to HB50]

Hello Mark! I thought they had CAR T at the Montreal Maisonneuve Hospital thx to

Matthew Schreindorfer. R.I.P.

[HB50]

Hi Lola69,

I am certainly happy to be wrong, but as far as I understood CAR-T has been approved for a childhood Leukemia and perhaps for another one or two Leukiemias, but I was under the impression Canadian trials for CLL were in the process of being put together but not yet operative until next year.

As I said, I could be totally wrong but that was almost certainly the case when I was faced with this choice mid 2017.

Mark

[Cllcanada Top Poster CURE Hero in reply to HB50]

Approved does not mean funded! This was approved in September, 2018

Health Canada has authorized use of tisagenlecleucel (Kymriah™), making it the first chimeric antigen receptor (CAR) T-cell therapy to receive regulatory approval in Canada.

Tisagenlecleucel (formerly CTL019) is approved to treat patients ages 3 to 25 with B-cell acute lymphoblastic leukemia (ALL) who have relapsed after allogeneic stem cell transplant (SCT) or are otherwise ineligible for SCT, have experienced second or later relapse, or have refractory disease.

Tisagenlecleucel is also approved in Canada to treat adults who have received two or more lines of systemic therapy and have relapsed or refractory diffuse large B-cell lymphoma (DLBCL) not otherwise specified, high grade B-cell lymphoma, or DLBCL arising from follicular lymphoma.

Novartis, the company marketing tisagenlecleucel, said it is working with qualified treatment centers in Canada to prepare for the delivery of tisagenlecleucel. Certification and training are underway at these centers, and Novartis is enhancing manufacturing capacity to meet patient needs.

hematologytimes.com/section...

CADTH to Evaluate CAR T-Cell Therapies

cadth.ca/news/cadth-evaluat...

Dr. Bells Lab is moving the goal posts

youtu.be/kkHzB0odR4U(Not working as expected?)

More on Dr. Bell..

ohri.ca/newsroom/story/view...

[HB50]

Thanks Chris! I hope you are doing well.

I was going to suggest in my last post that we ask you, but didn't want to put that pressure on you.

So just more for my understanding and to ensure I'm speaking about the current status in the right way, It is correct about no current trials for CLL?

Regards,

Mark

[Cllcanada Top Poster CURE Hero in reply to HB50]

Doing OK... but on a downward trajectory... although the last couple of months have been quite pleasant. I’m off O2 so don’t have to drag around a scuba thank.. 😀

Clinical trial in CLL...not that I’m aware of any Mark... there are issues in CAR T in CLL that need to be addressed. I think the U.S will move this treatment ahead, and in Canada likely we will focus on pediatric use.

Expense is a huge issue...in managed heathcare

~chris

[Hoffy]

A Sstem cell transplant is a major, very dangerous procedure. I would get 2nd and 3rd opinion before that. Study the statistics closely.

I would do a CAR-T trial before a Bone Marrow transplant.

I am 17P deleted and have done well on a Imbruvica plus Venetoclax clincal trial so far.

I plus V seems to be working well - even with P53 issues it appears.

Be well,

Hoffy

[Hidden]

I went to MSK in NYC. had tp53 gene mutation and 17p deletion. Only option was a stem cell transplant. Had a donor that was not a perfect match. I was high risk. Had it done in August 2016. Had to stay in the city for 41/2 months. I have had some minor setbacks but I am cured and life is wonderful. They are awesome there! Take your medicine because there are a lot of them and do as the teams instructs. Stay positive and in faith and you will do well.