About

I am a 58-year-old male who was diagnosed with Follicular Non-Hodgkin’s Lymphoma (fNHL or FL) in 2004.  When my lymphoma became refractory to conventional therapies (R-CHOP, R-Bendamustine, Revlimid/Rituxan “R-Squared”), I enrolled in a CAR-T trial at Memorial Sloan-Kettering in NYC in spring 2015.

My “re-engineered” T cells were re-infused on July 14, 2015.  As I write this in October 2016, I remain in Complete Remission.

This blog is intended to be a repository of news, updates, links, etc., regarding CAR-T, hopefully of particular relevance to Follicular Lymphoma patients like myself.

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28 thoughts on “About

    • Retreatment with CAR-T is specific to your particular CAR-T trial. One NIH CAR-T trial that offers CAR-T retreatment is NCT02659943. My wife is on this trial and currently in complete remission. If she progresses she can have up to three CAR-T infusions total. during the trial.

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  1. That’s a good question! I’m in touch with two other fNHL patients who have also gotten complete remissions from CAR-T over the last year or so, and between the 3 of us I don’t think any of us knows for sure. That’s partly why I started this blog, to try and collect news and information as we go forward.

    All 3 of us have had SCT recommended to us as a followup treatment should we happen to relapse, but we didn’t choose that option the first time around, so I don’t know if we’d choose it now, especially as CAR-T research continues to progress, and future CAR-T trials may become even more effective, and hopefully safer.

    In my case, I have a sister who happens to be a full match for me, but it was actually the SCT specialist we saw in early 2015 who encouraged me to enroll in a CAR-T trial instead, and I’m eternally grateful to him. As you probably know, there are certainly risks of life-threatening complications associated with SCT, and no guarantee of a durable remission.

    Are you yourself a fNHL patient, or a caregiver of one?

    Thanks for commenting, and welcome!

    — Ben

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    • Yes Sir! I was diagnosed 3 years ago at 48. Male. Took BR. In remission but it is slowly coming back. In W&W now. So sounds like I am following your path! I am getting scanned in Feb. I am leaning RR but Keytruda-R is an option too if treatment is required. No need for CAR-T yet but man it sounds good. I go to MDA in Houston. My onc said FL CAR-T trials may be available to us in 2017. I would be tempted to try one but I guess I better go through a few treatments like you did 1st. Who knows what lies ahead.

      Glad to hear of a long term survivor. You being diagnosed 12 years ago and in CR now sounds great. I see you flipping that 58 around and seeing 85 Ben.

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  2. Sorry to hear you’re relapsing from BR. It happened to me too. At some point I’ll post my a more detailed history of my treatments for information purposes. I got a 4-year remission from R-CHOP, but my R-Bendamustine remission lasted less than a year.

    I don’t know if you’ve been to lymphomasurvival.com, but there is some good fNHL information there from Robert Miller (the site’s founder) and his members. I learned a lot there when I was first diagnosed in 2004. He recommends reserving R-CHOP for a possible “transformation”, which is always a possibility, but I’ve already used up that option. Just something to keep in mind.

    I think you are wise to hold off on CAR-T. The Cytokine Release Syndrome (“CRS”, or “cytokine storm”) can be dangerous. The other two fNHL CAR-T patients I mentioned did not have significant CRS, but I ended up in ICU for 5 days, after having 10 days of fever immediately after infusion. We assume it was because I went into it with pretty significant tumor burden (a few abdominal lymph nodes were larger than 5 cm). Similar to SCT, it’s best to have somewhat minimal disease going into it.

    Wow, thanks for mentioning Keytruda-R for fNHL. I didn’t know that was an option. I’ll have to look into it. I’m sure the others would be interested as well. This blog is already benefiting a bunch of us!

    Thanks so much for your kind words re “seeing 85”. When I was first diagnosed, I had my doubts about seeing 60. Things have sure changed since then. As you know, there is so much coming out these days.

    For what it’s worth, Robert Miller at lymphoma survival.com was diagnosed with fNHL at age 46. He is now lymphoma-free at age 74, with not a lot of treatment in between. So there is definitely reason to be optimistic about this!

    To be continued, I gotta head off to work now…

    — Ben

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  3. Yes, my thoughts about R-CHOP are the same. I may use it pre-SCT or for transformation. I was Stage III with no BMI and no Bulky disease. All blood work is good. I always prepare myself for the worst, so relapsing is something I expected. I look at it this way, the Stanford Study grouped patients based on generations and those dxed from mid-80s to mid-90s had a Median OS of almost 20 years. This is a pre-R era. Obviously many of these patients had many treatments over many years till they could take R. If they could live that long wo R, I just need to suck it up and do the same. 60 would be great so that my kids are well gone from HS and married. I am 51 now. This is an on-going war with many battles. I am just glad it is not ALS, or Alzheirmer’s or a wheelchair. It could be worse. Many diabetics take drugs daily and have done so for years, so periodic treatment is not so bad. Cure? Sure, that would be great. But treatable is nice to hear. Incurable has been replaced with difficult to cure now. It is curable, just not most of the time. SCTs cure it most of the time and SCTs have been around a while. But immunotherapy and CAR-T will change outcomes no doubt. For this generation, it is what R meant to those patients dxed 25 years ago. If Median OS was 20 years a quarter of a century ago, it is likely going to be a lot higher for pts today.

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    • Totally agree that median OS is going to keep climbing, and increasingly without the use of traditional chemotherapy or SCT. I think getting to 60, and even 70 and beyond, while remaining in good health, will be quite doable for both of us!

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  4. Keytruda (pembrolizumab) plus Rituxin is being used in a Phase II trial at MDA in Houston. My onc tells me there are very few side effects. I am sure there are other trials out there. It is a PD1 inhibitor as you know. I do not know what the ORR or CR % is or PFS but he offered it to me as an option if and when I need treatment again. R-squared was the other option along with R-mono (which I would probably not take). I hear ABT-199 (Venetoclax) is being used in trials also. It is a BCL-2 inhibitor. He said W&W is a good option also, so I took it.

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    • I think W&W is always a good option, as long as it’s safe. I was on W&W for 4 years after dx, because I had no symptoms, other than a few large nodes on my neck and armpit. It was only when scans showed a mass growing around my spine that my onc convinced me to start treating it.

      We originally tried single-agent Rituxan (unsuccessfully) before resorting to R-CHOP. How did you come to try R-Bendamustine first? (That was not yet available to me in 2008.) Did you consider single-agent R?

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    • You certainly can, but I’m reluctant to leave one of my email addresses here on this site, only because I’m afraid it would draw tons of spam. Perhaps you would be willing to post an email address of yours here, and then I’ll contact you directly? As moderator, I can decline to publish your comment, once I’ve read it, so no one else will actually see it.

      Otherwise, I’m not sure, but I think if you join WordPress (even if you don’t start a blog), it might be possible to send private messages to each other. I’ll have to look into that one…

      — Ben

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      • I just noticed that you can also “follow” this blog by clicking the “Follow” button on the page and providing your email address there. I will see your email address, but it won’t appear anywhere on this page. Someone else has already done this.

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  5. Great blog I will follow with interest, DX 2014 age 42 male stage 3 grade 1 NHFL with enlarged spleen. Offered RCVP, and declined second opinion suggested ritux single agent. Four weekly infusions then once every 8 weeks for two years. Thankfully went into complete remission after 3 months treatment and remain in remission today.

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    • Hi Chris, and Welcome!

      That’s great news that you got such a good response from single-agent RItuxan. I think that happens in about 50% of fNHL patients. You were wise to seek a second opinion. I’m finding that with fNHL, there are almost as many opinions as there are oncologists! Thanks to the web, we can do some of our own homework.

      The only thing I should mention is that continued Rituxan “maintenance” has been somewhat controversial. Your oncologist is probably aware of this, but there was a large study called RESORT that ended a few years ago, and I believe it concluded that there was no benefit to remaining on maintenance vs. treating only when there was evidence of disease progression. I’m sure you can find out more on the web, Just something to consider…

      — Ben

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  6. R-mono was not offered to me when I was dxed. I do not know why. I had a couple of nodes over 3cm so my onc said I need to treat and we had 2 options: BR and the Relevance trial that compares BR to R-squared were my options. I chose BR and had a terrific response and was in CR at the 3 month scan. That was 3 years ago and I have 1 node at 2.5cm now. I doubt if R-mono would have worked better but who knows.
    Going back in Feb 17. As mentioned, Keytruda-R is an option he mentioned to me. R-squared also. And he said R-mono also but added that it would only keep it down for a year more than likely. Of course staying in W&W would be cool. I think 3cm is the threshold for treatment for him. Not sure if that is universal. He stated that it would only be hard to treat if nodes exceeded 10cm. Keytruda is one of the Novel therapies that Dr. John P Leonard lists in his presentation earlier this year where he states that 80% of us will die with and not from FL. That is a high % and sounds great.
    But one thing I have found is that we are ALL unique. I read what you have been through and think that is going to be me. But its not. I see pts who have likely been cured with 1 treatment. But that is not me. Who knows what lies ahead. Part of me wants to just stay off the www and let things work out and let my onc do his job. I do what I can such as exercise, eat right and sleep. Its good to hear a doc say I have an 80% chance of living out my life. Its good to read where pts diagnosed 25 years ago had a median OS of nearly 20 years. Its good to read that a good response is a good sign for long term survival. And its good to read about CAR-T and all these immunotherapy options coming. But I read something not so favorable and it sticks with me. So staying of the internet is something I did for a few years and it was nice. But now that I am in W&W I have been surfing. I lot has changed in 3 years, and that will continue.
    For me, this disease is 90% mental. On my mind a lot. A couple of years of remission would be nice again! I fear that I am refractory now to other treatments. Maybe that is a good thing. If that is the case, I can have an SCT or CAR-T infusion and be cured!!!

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  7. My wife’s oncologist said that if your are refractory to chemotherapy Auto SCT would not likely work. I recommend you look at the mortality and host vs graft curves before committing to Allo SCT.

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  8. All the second guessing and second opinions can drive you crazy. You just have to move on with the choices we made. You can’t compare yourself to other pts cuz we are all different. I also have seen various opinions on R-maint. And I am sure one day I will read where BR is not recommended. But you have to let it go. I did not go for a 2nd opinion because of the fact that IF it was a different opinion, who do you go with? Why is the 2nd opinion considered better than the 1st? For my next treatment, I am going to let my onc pick for me. After all, he is the expert.
    My onc also quoted me a 20 year Median OS 3 years ago at dx. And I read it in the paper 3 days later so I knew he was not pulling my leg. He said that was for all ages and all stages. Realizing, this was a realized OS based on pts dxed in the 90s…roll forward 20+ years and all the new options and then throw in the age of the patient, you guys will be fine. If you grouped pts dxed in there 40s there is not doubt there OS is higher than pts in general because there are many pts in their 60s+ (half are). Many years from now they will do a study on pts dxed in their 40s during this era and there is no telling how high the Median OS will be. It is a chronic, treatable disease that is no longer incurable but rather difficult to cure. And that is changing daily at a more rapid pace than ever. Immunotherapy and specifically CAR-T is a game changer that is here to stay. It is not a herbal remedy that you purchase online.

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  9. “Most patients will not die from follicular lymphoma, and that’s very reassuring. About 80% of patients will die with their follicular lymphoma and not of their follicular lymphoma,” said Leonard, Richard T. Silver Distinguished Professor of Hematology and Medical Oncology, NewYork-Presbyterian Weill Cornell Medical Center. “That really tells you something. If 80% of patients are not going to die from their disease, we can make a patient feel a lot better and can guide how we treat the patient.”

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  10. “Most patients will not die from follicular lymphoma, and that’s very reassuring. About 80% of patients will die with their follicular lymphoma and not of their follicular lymphoma,” said Leonard, Richard T. Silver Distinguished Professor of Hematology and Medical Oncology, NewYork-Presbyterian Weill Cornell Medical Center. “That really tells you something. If 80% of patients are not going to die from their disease, we can make a patient feel a lot better and can guide how we treat the patient.”

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  11. “Most patients will not die from follicular lymphoma, and that’s very reassuring. About 80% of patients will die with their follicular lymphoma and not of their follicular lymphoma,” said Leonard, Richard T. Silver Distinguished Professor of Hematology and Medical Oncology, NewYork-Presbyterian Weill Cornell Medical Center. “That really tells you something. If 80% of patients are not going to die from their disease, we can make a patient feel a lot better and can guide how we treat the patient.”

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  12. Hi Ben and Anon

    I would be really interested on how you knew that you relapsed ?
    Anon, dud you get to know it by CT scan, as such a small node cannot cause symptons, right ?

    Best regards
    Tom68

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  13. Hi all

    I wonder how you guys have found out, that you relapsed ?
    Especially Annons case, as such a small recurring node would not cause symptons, I guess. Was it seen through a routine CT scan ?
    I ask, as I am not sure at what frequence scans or ultrasonics makes sense ?

    Great page and best regards
    Tom

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  14. Three progressions (R-CHOP, BR and Idelallisib/rituximab) were identified by PET scans. When the Ibrutinib failed my wife gained 30 pounds in ~2 weeks and ended up hospitalized for 9 days.

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    • Same for me. My relapses were identified by PET/CT scans. Except for when I was first diagnosed in 2004, I was unable to palpate any lymph nodes, such as in my neck, etc.

      I’ve been told only about 25% of your lymph nodes are external and palpable, which makes periodic scanning necessary, Frequency of scans is a difficult question to answer. I know we all feel we want as little radiation as possible, while doctors love to have as much data as possible to make decisions with.

      My own feeling is, relapse alone is not enough reason to treat. I prefer to watch-and-wait as long as possible, until your health is really at risk. In my own case, it was only a mass that was threatening my spinal column that forced me to begin treatment each time. I considered each treatment as using up an arrow in my quiver.

      I kind of picked up this attitude from joining Robert Miller’s site at http://lymphomasurvival.com . That was where I went when I was first diagnosed, and I liked that it deals specifically with Follicular Lymphoma. Robert has written a few guides re When to Treat with What, etc., and there is a pretty active forum there.

      I only created this blog because http://lymphomasurvival.com does not really cover CAR-T, as very few FL patients have undergone it, and their site focuses more on dealing with lymphoma via lifestyle, etc. Even for SCT, they refer patients to Greg Dafoe’s site at: http://www.nhlcyberfamily.org . Greg underwent SCT many years ago. Maybe over time I can start to accumulate some useful information re CAR-T.

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  15. This is anon…a CT scan in early August highlighted a node in my groin as 2.5cm. (the only node mentioned in the scan summary) 3 years ago when I was diagnosed this same node was 2.5 but I could feel it externally. It went away with BR treatment. In August I cold not feel it unless I rubbed down deeply. To me, it was not the same size. It is not threatening any organs. I have not checked it lately. I do feel pain in my groin but here is the catch…I have had pain in my groin for over 25 years….maybe I had this all along…I doubt it. But I did have hernia surgery back over 25 years ago and the pain was still there afterward. I am not sure if I even had a hernia to be honest. SO now when I feel pain it plays with my mind.

    Question: How big should a node get before treatment is necessary? Ben, how big was the one around your spine? I want to avoid treatment as long as possible as well.

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    • Hi anon,

      The question of when to treat is always difficult, since it is not curative (unless discussing allo SCT or CAR-T, both of which are relatively risky and usually considered only after other treatments have been tried).

      So, in that sense, treatment is essentially palliative, and deciding when to treat is inherently subjective, by you and your oncologist. It becomes a question of how much risk to your health you are willing to tolerate vs. the peace of mind that comes with reducing or hopefully eliminating your tumor burden.

      In my own case, with each scan my oncologist kept asking whether I was beginning to feel symptoms from my growing “paravertebral mass”, and indicating it was just a matter of time. In 2012, I finally agreed to treat with BR when she felt the mass was large enough that symptoms were imminent.

      In 2008, when I also had the mass in my back (as well as some large, disfiguring lymph nodes in my neck), the decision to treat with R-CHOP was driven by a PET scan that showed SUV’s in some locations above 12, indicating possible early signs of transformation.

      So, in short, the decision to treat is really an individual one, hopefully arrived at by you and your oncologist together.

      I myself was influenced by some of the literature written by Robert Miller over at http://www,lymphomasurvival.com . Robert has a document he wrote on his website called something like “When to Treat With What”, that he keeps current as new therapies are developed. His attitude is to reserve treatment as long as possible, as they are like “arrows in your quiver”.

      That being said, several years ago he needed emergency intervention when he delayed his scans too long and suffered a bile duct blockage from a large lymph node that might have been detected had he had a recent scan. He wrote about it on his website at the time.

      I recommend his website for his documents and for the chat forum he maintains, as it is specific to Follicular Lymphoma. He defers questions about allo SCT to Greg Dafoe, who was cured of fNHL in 2002 and has a website at http://www.nhlcyberfamily.org .

      Robert’s website has scant mention of CAR-T, which is partially why I decided to start this blog you’re reading now. 🙂

      I hope this answer helped a little!

      Wishing you best of health however you decide…

      — Ben

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