I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well). Does anybody know if there is anything in a trial that targets CD20 ???. I have MZL but since it constitutes a very small percentage of B malignancy, I joined this group because of certain similarities and the wisdom and abundance of current pieces of information of this group.
I have TP53: I was told I will not react to... - CLL Support
I have TP53
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Doremefasol
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will it be a reduced intensity transplant or a regular transplant. 2 totally different things
Doremefasol in reply to
Reduced intensity because I am 65.
If you give your general location people could suggest places to ask about clinical trials.
For instance, I live near Johns Hopkins in Maryland. They do a lot of transplant research.
When it comes to Car-T other locations are more experienced.
I am in NY state , far away from any major hospital centers. I would travel if something would be available anywhere else.
Have you browsed clinicaltrials.gov ?
Even if you are not seeking new treatment now you could talk to investigators to get a sense of what you might qualify for in the future.
15 clinical trial results are still recruiting when I looked up Marginal Zone Lymphoma and the state New York.
Thank you . I will look that up.
Could you send me a link , I couldn’t find them.
clinicaltrials.gov/ct2/resu...
What I did is a search on clinicaltrials.gov of Marginal Zone Lymphoma. Narrowed Search to New York. Then I filtered the results to include: Not Yet Recruiting, Recruiting, Enrollment by Invitation.
(These are results for trials for MZL in general.. not specific to Car-T or transplant.)
If you are only looking for Car-T or transplant there might be a lot more opportunities out of state. For instance in Seattle:
"A Phase I/II Study to Evaluate the Safety of Cellular Immunotherapy Using Autologous T Cells Engineered to Express a CD20-Specific Chimeric Antigen Receptor for Patients With Relapsed or Refractory B Cell Non-Hodgkin Lymphomas"
what chemo did you have?
I had Bendamustin and Rituximab x6 months , 6 year ago, it kept me in remission for almost 5 years. Then , when I started to have symptoms again I got the same combination based on my prior long remission , this time 4 rounds. Of course it didn’t work the second time around. A year ago , I was a participant in clinical trials, immunotherapy aiming at CD 20 , I have had a lot of complications. Instead of destroying my sick cancer cells , it was acting on my healthy red blood cells , so I had severe anemia and countless blood transfusions. Finally it was stopped with steroids , but it took many months to stabilize. Finally I was put on Ibrutinib as from late September and it is working well at present . This is why they want to to the stem cell Now. I am so scared , I can’t sleep , frankly I am almost paralyzed with fear about the transplant. I would like to try another immunotherapy aiming CD 19 which is more appropriate in my case
If you can manage consider getting a fresh set of eyes on you from a CLL expert at a different research center. Lots of options east of the Mississippi.
Yes , I am searching . Thank you for responding.
Are Boston or NYC possibly doable?
Yes, which one would you suggest?
Dana Farber in Boston is a major center. Jennifer Brown and her team are well known for CLL, but they may have someone with a special interest in MZL.
In NYC, Richard Furman at NY Presbyterian Weill Cornell,
Jenifer Lamanna at NY Pres. Columbia, or Dr. Mato at Sloan Kettering. Again they may know of someone with a special interest in MZL.
All of these centers have multiple trials and the doctors would be aware of others. I would look at the clinicaltrials.gov site for MZL trials. If one of these sites has one, that would be a good place to start. Often when you pull up trials for your condition and look at locations for a specific trial 2 or 3 will be listed with a little note that says something like 240 other locations. Click on that to find the centers you are interested in.
Have you discussed combination treatment including Ventaclax along with Ibrutinib. FDA have now approved the treatment and the trials show deep remission after short treatment cycles.
Doremefasol in reply to
Venetoclax unfortunately is not approved for marginal zone lymphoma
I got venetoclax for having a history of 17p tp53 (although I have different clones now, it was still approved after imbruvica failure).
edit to add, I have B-PLL and both imbruvica and venetoclax approval was due to 17p history
Once a drug has been approved, it can be prescribed off label. I suspect that you would find Venetoclax easier to get that way if you saw a specialist who is also involved in research. A friend is getting it offblabel and free from the company.
Hi,
I would highly recommend seeing a cll specialist. I see Dr. Jennifer Brown at Dana Farber, Dr. Matthew David, also Dana Farber, is also very good. I can honestly say that I would be in a very different situation had I continued with my hematology oncologist who was not a cll specialist. Fortunately, the world of blood cancers is moving at a rapid place. The need for a person with cll to see a specialist, in my opinion, is essential. It is important to see someone who is well versed in timing the treatment, what treatment will work for your particular cll, what looks like a more viable option for you, etc.
I am sorry that you are going through this. Wishing you all the best.
Sandy
I have splenic marginal zone lymphoma and the 17p deletion. I lurk in this community for information. I am blown away by the depth of comaraderie and support shown. I hope no one minds my posting here, since I do not have CLL. Only one half of one percent of people with non Hodgkin’s lymphoma have smzl. I guess we are are a bit of an orphan disease. I was diagnosed at Mayo Clinic in March 2018 and needed treatment with Rituximab in March 2019 due to enlarged spleen causing pain. I did 4 weeks of Rituximab and my spleen and blood counts returned to normal. I was told at Mayo Clinic that there was only one study showing that the 17p deletion meant poor prognosis for people with smzl. I also thought that the 17p deletion was less of an issue now that biologics were used in treatment as opposed to traditional chemotherapy. Was wondering why you were told that your treatment options were so limited now. Wishing you all the best. Debbie
It is important you post here. Often we see the same doctors. It looks like the same team of researchers at NIH study CLL and MZL.
Thank you DriedSeaweed , you make us feel welcome!!!!!!!!!!!!!!!
in reply to debcesq
Your welcome to join and post. We all have one thing in common, we all have cancer and we fight it together.
Doremefasol in reply to
Thank you.
Juno currently has trials check out their website for info
Stem cell transplants are getting very good results. I'd be much more afraid of the old bone marrow transplants. Don't let that fear get to you; there are many exciting treatment options now available for you with very good results. Prayers for you 
Thank you for your encouragement.i was trying to find someone here who went through that but I haven’t yet.
Hi doremefasol
KAS8 gave a pretty good overview of her recent stem cell transplant and mentioned she would be happy to answer any question anyone on this forum might have. Try sending her a chat message
Regards
Heather
Thank you , I will contact her!
How do I find KAS8?
I hope this makes sense
On your phone go to the chat icon at the top of your screen (two little word bubbles)
Click on them
Then click on the word compose
In the box labeled To
type in KAS8
Then continue with your message in the box below
It will go directly to her
She will need to go in to pick it up so you may not hear from her till she goes in to view Healthunlocked
If I have made an error perhaps one of the administrators could jump in and give more direction
Good luck
Heather
I just wrote to her, thanks
I forgot to add I believe she is in the UK so there is also the time difference
Darch on http;//cllforum.com did. She had some complications specific to her case, but is celebrating her 4th rebirth day this week on the top of a mountain with her girls and her dog.
Claire, both stem cells from bone marrow and from blood can be very successful. Doctors decide which is best on a case by case basis. They can also do haplo (half) matches and umbilical cord stem cells for those who don’t have a good match. Doctors have learned a lot about how to make them work.
Doremefasol,
Obinutuzumab "Gazyva" is a CD20 monoclonal antibody approved to treat CLL.
CD20 is a B cell antigen.
What is the doctor's reason for suggesting Car T with regard to the CD20 presence?
JM
Hi , after failed immunotherapy in clinical trials for CD 19 ,they told me carT would probably work since I do have CD 20 present. I apparently have both but CD 20 is predominant. This is how I understood the skimpy explanation..
What was the trial drug(s), and what was the end point looking at?
E.g.,
Phase I trials aim to find the best dose of a new drug with the fewest side effects. Doctors start by giving very low doses of the drug to a few patients. Higher doses are given to other patients until side effects become too severe or the desired effect is seen. The drug may help patients, but Phase I trials are to test a drug’s safety. If a drug is found to be safe enough, it can be tested in a phase II clinical trial.
bkoffmanCLL CURE Hero
Hi, I am no expert in MZL but consider seeing Dr. Peter Martin at Cornell in NYC who heads up their NHL research. Good guy. I believe MZL expresses CD19 as well as CD20 so a CART trial aimed at CD19 would likely help and those trials are more mature. PI3K inhibitors such as idelalisib and duvelisib can be very active too. The research centers can also do testing for actionable mutations. Ask about it. You have options but as you know, you might need to get on the road to make them happen. Stay strong. We are all in this together. Brian CLLSociety.org
I am 17P deleted with CLL. I have done very well so far on Imbruvica plus Venetoclax.
If they could add in Venetoclax off label or on a trial it might work well for you as well,
Many people are getting to MRD-U on the I plus V combo,
Transplant is last resort - in my opinion ,
Be well,
Hoffy
I have asked my doc. about Venetoclax , since some people here were happy with the results . They said that it is not approved for MZL. I will ask again .
Ok. Not sure if it is good for MZL or not.
Can always ask for off label or a clinical trial.
Be well,
Hoffy.
Hi,
I have enmzl and see Dr. Davids. He has mzl patients but doesn’t do mzl research. To my knowledge there are no doctors specializing in mzl. I was treated with obinutuzumab and had a very good response. I have bright cd20 and cd19. There is a trial of Ibrutinib and venetoclax in mzl. A small study of duvelisib showed 0% response in enmzl but a good response in nodal and smzl. Umbralisib has about a 50% Orr in mzl and is awaiting FDA approval. Revlmid + rituxan has a good response rate in mzl. There is a splenic marginal zone Facebook site. Wishing you good luck on your next treatment.
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