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Here I go again. Large B cell NHL Double hit. Getting prepared for CAR-T cell treatment. ISO adult experiences.

CritterMamaLori's picture
CritterMamaLori
Posts: 48
Joined: Feb 2018

I'm sick and tired of being sick and tired. Some days in that 4 day RICE treatment I always say I just want it over...one way or another. Since my neck lymph nodes seem to grow faster than "they" want now "they" want to do the newest CAR-T cell treatment. Stem cell replacement won't work on me. I've read and heard many good things about CAR-T cell but there's always down sides too. Many are "cured" for years. Many have had their cancer come back in months. I had mine come back in less than 2 months after 6 rounds of RCHOP and now this. I'm doing 4 days of RICE treatment every 3 weeks. Never feeling well. Scared to death. The side effects of the CAR-T sound horrible. Any one else had or going through CAR-T cell? I've talked to a kid parent that their kid went through it but I am an adult. Just sitting and waiting for someone to contact me from Sarah Cannon and let me know what is really going on. Anxiety is making me nuts!!

Evarista
Posts: 238
Joined: May 2017

Oh Lori, I am crushed to hear this, as you must be also.  Know that everyone here will be wishing you strength as you go forward.

I have not seen anyone here who has actually gone through with a CAR-T procedure.  I believe that there was someone who talked with MD Anderson about it, but did not end up having one.  There IS a CAR-T group at the Leukemia & Lymphoma Society community website:  https://communityview.lls.org/groups/car-t-cell-therapy  I saw that least one person there is out  ~a year post-CAR-T.  You might find others there who have been through it, but it is so new for us lymphoma folks that the numbers may be small.  Since it's been in use longer for leukemia patients, you might look over on the leukemia forum for more people to talk to/learn from. 

When I was investigating where I might go if I needed  CAR-T, one thing that struck me was that the clinical support team is incredibly important, not just the transplant team.  I definitely want a team of RN's, LVN's, NP's, PA's, residents, etc. who are intimately knowledgeable on how to handle any post-transplant issues.  But then I realized that the protocol is only offered at specific FDA-approved locations and that all of these will have that kind of team.  Do you know yet where you will go yet?   Hopefully you not further from home.   Be strong...You've got this. We'll be thinking of you.

 

po18guy
Posts: 934
Joined: Nov 2011

But double hit is rare. CAR-T is new. I hope that you can find a patient or patients who have undergone it. You might contact the cancer center's CAR-T program and see if they can refer you to another patient, or perhaps some statstitics on your sub-type of lymphoma.

CritterMamaLori's picture
CritterMamaLori
Posts: 48
Joined: Feb 2018

I've signed up on the LLS discussion site and searching there. We'll see how that goes.

Lori

illead's picture
illead
Posts: 832
Joined: Aug 2012

Hi Lori,

     Bill relapsed twice in '17 due to having to give up the target drug Ibrutinib due to intolerance.  We saw Dr Michael Wang at MD Anerson in Houston as he is a specialist for MCL.  He wants to put Bill in the Car-T trial but since he is now in remission he does not qualify.  If he does relapse, it is still a possiblility although his age may be a factor now.  I agree with what Evarista said about not only a good  transplant team but a good clinical support team as well and as she said probably anywhere it is done there is a good team.  I know for sure though that MDA has just that.  They have different teams for different scenarios that could happen.  MDA is an awesome cancer center and if Bill  faces Car-T in the future we wouldn't hesitate.  They are working hard at making it an easier process to go through and that was over a year ago so I am thinking that they have made some headway.  I sure hope for the best for you.

Hang in there,

Becky

 

CritterMamaLori's picture
CritterMamaLori
Posts: 48
Joined: Feb 2018

It is right at Vanderbilt but not the university setting. My local oncologist says I would get more personalized care than going to Vanderbilt. It is 4 hours away rather than much futher away from my home. Nothing is set in stone but my specialist is looking for a clinical trial for me. Only thing about clinical trials is they are not guarrenteed. The "computer" basically picks from the candidates so it's a 50/50 chance I will actually get it. I'll try to keep updated here as best I can when I'm feeling up. 

Thanks for all replies!

Lori

Evarista
Posts: 238
Joined: May 2017

I took a look at that Center and saw a bunch of "Johns Hopkins" and "Harvards" on the educational descriptions.  Seems as though you will be in good hands there.  When you have the energy, do let us know how it is going.  You will be in our thoughts.

illead's picture
illead
Posts: 832
Joined: Aug 2012

Sounds like you are in good hands.  I know the waiting is hard though, try to stay as positive as possible so it doesn't get you too down.  That is easier said than done.

Harmon
Posts: 2
Joined: Nov 2018

I am double hit non-H lymphoma and 62 yrs old. After R-epoch and R-Ice failed I was in a bad way, fatigued and blasted from both the chemo and the disease. At the same time FDA approved Yescarta (car-t) for relapsed patients like me. Very fortunate timing. Had my marrow blasted with chemo one last time and handed over my blood for customization. Blood came back full of little assassins. After getting those cells, all hell broke loose. (Doctors did say high risk/high reward) I had a major cytokine response (the assassins flood the body with a chemical response as part of sounding the alarm) and basically lost my mind for several days as well as low blood pressure, fever, etc. Didn't know my own name. Had a great medical management team, though, which is key. Came home from hospital after 8 days unable to walk, think. Three weeks later, PET showed full remission. Darn near miraculous.  Recovery is slow but steady, especially since I still need to recover from previous harsh chemo. Regained my brain, regained my nerves, muscles, etc. Blood count very slow to recover but getting there. Every person is different, but I need to tell you, I feel blessed to have been able to take this treatment. Insurance paid, luckily. Cash customer would have paid $375,000 for the custom cells and all-in cost  of treatment nearly $1 million.

CritterMamaLori's picture
CritterMamaLori
Posts: 48
Joined: Feb 2018

You are one of what I am seeking and would love to hear any other experience since I know everyone is different.

All the best to you and yours and hope for continued freedom.

I want my husband to read all this and if we have any questions I hope you won't mind me reaching out to you.

Scubamom for two's picture
Scubamom for two
Posts: 15
Joined: Apr 2018

Hi Lori,

I am sending positive thoughts your way and I hope you and your awesome team find the best option to get you to remission!

Greetings Harmon,

Thank you so much for sharing your situation.  I am so glad to hear of your good eventual result!  I was wondering if you would be willing to share what happened during and after R-EPOCH and R-ICE treatments?  Was R-EPOCH unsuccessful or did you have a period of response to that treatment and then relapse?  Same questions for R-ICE?  I don't think I had double-hit, but I did have double expressor DLBCL.  I had 6-rounds of DA-R-EPOCH, about 12 IT chemo infusions, and two rounds of High Dose Methotrexate.  The evil cells were killed off and I just had my 9 month post-treatment scans and check up and am still reportedly in Remission.   I am still recovering from the treatments, so I can't even imagine how you must be feeling!  Best wishes for 5-yrs of remission to equal being cured!

illead's picture
illead
Posts: 832
Joined: Aug 2012

I just want to thank you for your experience since that may be in my husband's future.  It is the first we have heard from the horse's mouth so it really helps.

Hoping you have a full recovery,

Becky

Harmon
Posts: 2
Joined: Nov 2018

Hi, Scubamom. Hurrah for the death of your evil cells. My doctors had great faith in R-Epoch, but in my case, it killed a lot of cancer over 6 months but left one hot spot that at first appeared as maybe just scar tissue. I had 6 rounds, outpatient, with a pump that I went home with for a week at a time. The dose was ramped up each round until neutropenia finally sent me to emergency in maybe the 4th round. I took shots after each round to boost white blood cell production.  One nasty little helper, the vincristine, had to be eliminated from the EPOCH cocktail after the 3rd round because of side effects, although it seems to be the cyclophosphamide and doxorubicin that cause the longer term side effects, in my case, including A-fib (heart), catching C-diff in hospital (nasty bacteria controlled with an equally nasty antibiotic)  and those other changes to your body and soul that you are probably familiar with. At first, the Rituxan (rituximab) was wonderful. I could feel the battle going on in my guts (where the lymphoma  decided to manifest) but then I guess the cancer got smarter, as it sometimes does. When R-epoch failed the cancer began to come back aggressively and I immediately started 3 rounds of R-ICE. Scan showed it to be completely ineffective.  R-ICE , about one month after the EPOCH, put me in a bad place. Neutropenic, sallow, on by back.  But the human body is incredibly resilient.  I should add that the number of drugs to handle side effects is impressive. And we are all fighters, right? It can make a real difference.

Evarista
Posts: 238
Joined: May 2017

As another "double-expressor", currently NED post DA-R-EPOCH, I will be following this conversation closely.  Like Bill, I have probably "aged-out" of eligibility for a clinical trial should I relapse.  But do want to know how it goes for you, Lori, and anyone else needing this procedure.  

Thank you, Harmon, for your feedback.  Be well, everyone.

po18guy
Posts: 934
Joined: Nov 2011

...you either respond or you do not. The problem with searching for others' experiences is the risk of finding those with poor outcomes - those whose experience does not apply to your own. And, learning of those poor experiences can only complicate your own journey. CAR-T would not exist; would not be FDA approved unless it had been shown in successive trials to be both effective in a certain percentage of patients, and to be superior to and/or less risky than other treatments.

It is a very viable option, but doctor had better have plans B, C and D in hand, just in case. Such a philosophy has saved my life several times. In 2014/2015, I failed four drug regimens in a row, with four successive PET/CT series scans which were labelled rather ominously "progression" - and I began at stage IV!

Some things we should pay attention to, and others not so much. Like the misunderstood and perhaps overused term "prognosis." It is a weather forecast - and how accurate are those?

CritterMamaLori's picture
CritterMamaLori
Posts: 48
Joined: Feb 2018

Isn't that how it is with ANY treatment on ANY one? WE ARE ALL DIFFERENT. I'm asking as a person with unknowing expectations. I just wanted to know what it was like for any adult who has actually been through it. Good and bad results are welcome. I am far from invincible.  I can read what "might" be expected. I can read technical theories and percentages. Thanks for your all knowing, po. We all know you have prevailed through it all and I hope you continue.

To those that have experienced CAR-T cell immunotherapy I am very interested in hearing your story and how you got through it. Good or bad. Thank you in advance.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3088
Joined: May 2012

When Hurricane Florence was approaching the SC coast, initially the forecase experts said that it would turn sharply north, and not touch the US mainland.  A few days out, this changed, and the sophisticated models showed it hitting near VA, then NC, then the NC/SC border.

Up until 24 hours before landfall, forecasters DID NOT KNOW the exact landfall location.  The same is true every year for nearly all hurricanes.

But weather science knows what the exact average temperture will be in Miami in 25 years...., or what the sea level will be in Savannah.

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