Diffuse Large B cell Lymphoma-Non-Hodgkins is diagnosis

13

Comments

  • AaronW
    AaronW Member Posts: 45
    Bill1958 said:

    Pet Scan and cat scan good

    My scans have shown, after two Rchop treatments, a 90% remisssion.  They have one spot on my lung that scaned hot but they think it is not cancer.  Otherwise it would be 100% remisssion.  I have 3 more treatments to do and we are really happy that it is going so good.  Thanks everyone for your support in this.

     

    Great News!

    That is great to hear Bill. I just had a PET Scan yesterday and see my onc on Tuesday just before my third R-CHOP. They told me we were aiming for six and I see you are doing five. Any idea on why a certain number of treatments? After what treatment will they scan you again or do you have to do the remaining three first?

    Aaron

  • Bill1958
    Bill1958 Member Posts: 67
    AaronW said:

    Great News!

    That is great to hear Bill. I just had a PET Scan yesterday and see my onc on Tuesday just before my third R-CHOP. They told me we were aiming for six and I see you are doing five. Any idea on why a certain number of treatments? After what treatment will they scan you again or do you have to do the remaining three first?

    Aaron

    Opps! 4 more treatments

    I ment 4 treatments for a total of 6 of RCHOP.  They scaned me after 2 treatments(pet and cat) and called it 90 % remission because of a hot spot on my lung(which may or may not be cancer).. They will scan me again after the 4th treatment.  Hoping you get good scan news too Aaron.

  • gbread
    gbread Member Posts: 13
    CAR-T therapy for Diffuse Large Cell B Lymphoma?

    Has your doc mentioned CAR-T immunotherapy?  It was approved last year for this type of lymphoma. 

  • Bill1958
    Bill1958 Member Posts: 67
    No mention of CAR-T Cell Immunotherapy gbread

    I have heard of this therapy via this web site, but that is all.  It sounds promising.  Right now, I'm sure the oncologist will stick with RCHOP which has been showing good results for me

  • Evarista
    Evarista Member Posts: 325 Member
    1st, 2nd, 3rd line of treatment?

    AFAIK, at this stage, CAR-T is not used as a first line therapy.  Not even sure that it is being used as a second line, if R-CHOP/R-EPOCH fail.  If I recall correctly, next step would be autologous stem cell transplant.  It that failed, then CAR-T.  I imagine that this is a fluid situation as more data becomes available.  Also, the currently approved CAR-T therapy is for tumors that express the cell surface molecule CD19.  Not all of them do, unfortunately.  Next generation CAR-T's are in the works, though, including a CD22 and a hybrid CD20 of some sort (I forget the specifics).  These are still in or just entering clinical trials.  Max or Po may be able to update us on these. This field seems to be moving rapidly, which is good news for all of us.  Be well.

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    Evarista is correct.

    Car-T is only approved after a patient has relapsed twice with other regimens. At this point a lot of the Car-T trials have led to an unacceptably high number of patient deaths. When I asked about it I was told its not currently an option for most people. Although I am sure some good will eventually come from this work, right now it is a long way from being available except as a last resort For some very specific cases. Too bad lymphoma is not a vampire in which case we could shoot it with a silver bullet.

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    Evarista said:

    1st, 2nd, 3rd line of treatment?

    AFAIK, at this stage, CAR-T is not used as a first line therapy.  Not even sure that it is being used as a second line, if R-CHOP/R-EPOCH fail.  If I recall correctly, next step would be autologous stem cell transplant.  It that failed, then CAR-T.  I imagine that this is a fluid situation as more data becomes available.  Also, the currently approved CAR-T therapy is for tumors that express the cell surface molecule CD19.  Not all of them do, unfortunately.  Next generation CAR-T's are in the works, though, including a CD22 and a hybrid CD20 of some sort (I forget the specifics).  These are still in or just entering clinical trials.  Max or Po may be able to update us on these. This field seems to be moving rapidly, which is good news for all of us.  Be well.

    Just wondering

    Wouldn’t CAR-T targeting CD22 kill all b-cells, healthy and lymphoma, the way Rituxan does? Isn’t the whole idea to attack only the lymphoma cells, IE a magic bullet? They need a different marker which is only on cancer cells, maybe not the same one for each patient.

  • Evarista
    Evarista Member Posts: 325 Member
    ShadyGuy said:

    Just wondering

    Wouldn’t CAR-T targeting CD22 kill all b-cells, healthy and lymphoma, the way Rituxan does? Isn’t the whole idea to attack only the lymphoma cells, IE a magic bullet? They need a different marker which is only on cancer cells, maybe not the same one for each patient.

    Gotta get 'em all!

    Shady, you are correct I think.  CD20, CD19, CD22 are all B-cell markers. Presumably the goal is to knock out every last one of them. The normals just get caught in the crossfire  If a lymphoma cell has slipped through the CD20 (Ritxuan) net, then the idea is to go after them with a different target.  If you look at the clinical trials, you may see that some of the newer ones are hybrid with respect to target...The old one-two punch, as it were.  Simply put, these molecules are not only different on the outside, but also on how they send signals on the inside of the cell.  The antibodies themselves are also structurally different and don't necessarily "kill" in the same way. This is why the newer anti-CD20's differ from Rituxan in mechanism of action (I think).

    A magic bullet has been the oncologists dream for quite some time.  Sincerely hope with get there!

  • Bill1958
    Bill1958 Member Posts: 67
    Question about psychological time

    Before my diagnosis, time was going fast and it seemed as if a year was gone in a flash.  Now, after diagnosis, it is like time has stood still.  It is more like a week is a year.  Anyone else felt this way. Just curious!

  • gbread
    gbread Member Posts: 13
    ShadyGuy said:

    Evarista is correct.

    Car-T is only approved after a patient has relapsed twice with other regimens. At this point a lot of the Car-T trials have led to an unacceptably high number of patient deaths. When I asked about it I was told its not currently an option for most people. Although I am sure some good will eventually come from this work, right now it is a long way from being available except as a last resort For some very specific cases. Too bad lymphoma is not a vampire in which case we could shoot it with a silver bullet.

    CART-T

    Hi all,

    CART-T is not chemo, it is immunotherapy and its beyond the clinical trial phase. It was approved just last year by the FDA for B cell lymphoma  I asked my oncologist about it when it was approved. Unfortunately it isn’t for T-cell which is what I have now. But he seems very impressed with it. Might be worth asking about since it’s the newest treatment for B cell. 

  • gbread
    gbread Member Posts: 13
    ShadyGuy said:

    Just wondering

    Wouldn’t CAR-T targeting CD22 kill all b-cells, healthy and lymphoma, the way Rituxan does? Isn’t the whole idea to attack only the lymphoma cells, IE a magic bullet? They need a different marker which is only on cancer cells, maybe not the same one for each patient.

    CART-T only targets the cancer cells

    CART-T only targets the cancer cells and leaves the good cells alone. The patients’ cells are removed, then reprogrammed to attack only the cancer cells, then the reprogrammed cells are put back in the patient.  it’s the newest approved treatment for B cell, so im just saying if I had B cell I would definitely talk to my doc to see if it was an option. 

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    gbread said:

    CART-T only targets the cancer cells

    CART-T only targets the cancer cells and leaves the good cells alone. The patients’ cells are removed, then reprogrammed to attack only the cancer cells, then the reprogrammed cells are put back in the patient.  it’s the newest approved treatment for B cell, so im just saying if I had B cell I would definitely talk to my doc to see if it was an option. 

    Wrong

    simply not correct for current versions. The current versions (cd19 and cd20) work on the same way as Rituxan except they direct a t-cell to the antigen on the surface of a cell. Rituxan attacks cells with CD20on their surface. The goal of Rituxan is to kill all b-cell lymphocytes, healthy and diseased, and replace them with new healthy ones produced by the bone marrow. CD 19 is found on almost all b-cell Lymphocytes. CAR-T therapy attacks any cells having CD19 on its surface, healthy or not. CAR-T has limited approval for DLBCL for people for whom all else has failed and cases where follicular has transformed to DLBCL. It is primarily being used for ALL (leukemia) in children. Approximately 20% of patients experience severe reactions, primarily neurological, and several have died after the treatments. If I am wrong about this please tell me. I am barreling toward my second relapse and it may be an option. if I am wrong, please let me know!

  • ShadyGuy
    ShadyGuy Member Posts: 756 Member
    ShadyGuy said:

    Wrong

    simply not correct for current versions. The current versions (cd19 and cd20) work on the same way as Rituxan except they direct a t-cell to the antigen on the surface of a cell. Rituxan attacks cells with CD20on their surface. The goal of Rituxan is to kill all b-cell lymphocytes, healthy and diseased, and replace them with new healthy ones produced by the bone marrow. CD 19 is found on almost all b-cell Lymphocytes. CAR-T therapy attacks any cells having CD19 on its surface, healthy or not. CAR-T has limited approval for DLBCL for people for whom all else has failed and cases where follicular has transformed to DLBCL. It is primarily being used for ALL (leukemia) in children. Approximately 20% of patients experience severe reactions, primarily neurological, and several have died after the treatments. If I am wrong about this please tell me. I am barreling toward my second relapse and it may be an option. if I am wrong, please let me know!

    Talked to a clinic

    i asked and was told that currently approved CAR-T technology for lymphoma is generally preceded by strong chemo to knock the b lymphocyte levels as low as possible.  The CAR- T is then administered to “finish them off”. Then healthy new b lymphocytes are produced in the bone marrow. Currently approved CAR-T therapies use CD19 and CD20 as targets. Both of these antigens are primarily found in b lymphocytes. I think that the confusion comes in that T-cells are general purpose. The CAR-T cells are trained to attack only b-lymphocytes which are the cancer cells in lymphoma. So attacking the cancer cells in this case means attacking b lymphocytes only some of which are cancerous clones, some are healthy. The CAR- T does not distinguish between healthy b cells and cancerous ones. Work is going on to target only the cancerous b cells only but that technology is fraught with side effects and currently not approved outside of clinical trials. Hope this is accurate info. There are dozens of studies going on all over the world. The technology is evolving rapidly!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    gbread said:

    CART-T

    Hi all,

    CART-T is not chemo, it is immunotherapy and its beyond the clinical trial phase. It was approved just last year by the FDA for B cell lymphoma  I asked my oncologist about it when it was approved. Unfortunately it isn’t for T-cell which is what I have now. But he seems very impressed with it. Might be worth asking about since it’s the newest treatment for B cell. 

    FDA/ CAR-T

    https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm581216.htm

    "Everybody's corrrect."

    Yescarta (a CAR-T form) was FDA approved for DLBCL by the FDA on October 18, 2017.  Prescribing information says two prior relapses with other modalities required first, as Shady noted.

     

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Bill1958 said:

    Question about psychological time

    Before my diagnosis, time was going fast and it seemed as if a year was gone in a flash.  Now, after diagnosis, it is like time has stood still.  It is more like a week is a year.  Anyone else felt this way. Just curious!

    Time

    As I recall it, my chemo time did drag by slowly. I was unable to work or do much of anything, and the days were slow.

    I just turned 62, and now the years fly by so fast it's hard to keep up.

    Psychologists theorize that for kids, a year is a huge part of their total life expeerience, and that therefore a year seems to them much longer than for older individuals.

  • Bill1958
    Bill1958 Member Posts: 67
    Neuropathy: Help for weak and tingling hands and feet.

    Hi everybaody.  Round 5 of a 6 round regiment of RCHOP is this Monday.  Doing well on most side affects accept neuropathy.  Any information would be deeply appreciated.  BTW, I wondered how Aaron from this thread made out as I haven't heard from him in a while.  Life is love and love is life.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Bill1958 said:

    Neuropathy: Help for weak and tingling hands and feet.

    Hi everybaody.  Round 5 of a 6 round regiment of RCHOP is this Monday.  Doing well on most side affects accept neuropathy.  Any information would be deeply appreciated.  BTW, I wondered how Aaron from this thread made out as I haven't heard from him in a while.  Life is love and love is life.

    Nueropathy

    [ Note for critics: I am AWARE that I have written the following account, or accounts very similiar to it, before to other readers.  I repeat it here because the information was REQUESTED.  The same for anything else I repeat:  There is no archival function here at CSN, and the only way for a new patient to know what was shared months or years prior is to rewrite it, or find the old post, and then cut-and-paste. I address each newcomer as a tabula rasa, or blank slate, a new beginning, because it IS new for THEM. ]

    Bill, your neuropathy is caused by the Vincristine you are on. Vincristine and almost identical Vimblastine are in CHOP, ABVD, EPOCH, and numerous other combos. These drugs are vesicants, or blister agents, and usually administered with a push-pull cylinder, not via a drip bag.

    Neuropathy intensity is usually linear, or increases in intensity with total dose. The good news is it usually goes away also, after treatment ends. It may intensify just a tad, since you have one remaining cycle.  In this pattern neuropathy symptoms are similiar to many other classic chemo symptoms, like "chemo fog."  That is, some get it, most do not. Getting any given symptom is unpredictable. And the symptoms usually start gradually, intensifies with number of cycles, and then gradually clear.  USUALLY.

    Neuropathy ending happens slowly for most writers.  I am guessing a time frame of a few months after chemo until the symptoms are mostly gone.  I am among a small minority for whom the symptoms never left.  And I never had what I would call "pain." My symptoms were mostly numbness and the inability to feel a sense of touch. For instance, I still cannot turn newspaper or book pages very well.  Pressing buttons on a cell phone is hell for me, and keyboarding is also a challange. Even scrolling with a mouse can be tough.

    My oncology center (around 30 doctors) gives new chemo patients handouts on a variety of possible conditions. It recommends chemo patients not walk barefooted, because some with severe neuropathy have stepped on glass or sharp objects, and not known it, until blood was spotted later.  Few people get neuropathy THAT bad, but it happens. When I was in a clinical trial for neuropathy cream, the RN running the study said that some cases of neuropathy caused individuals' entire body to go numb, also extremely rare.  My feet do stay numb all the way to the knee however, and my hands are usually numb to about the elbow.

    Last I checked, there were no drugs to treat chemo-induced neuropathy, which is different from diabetes-induced.  This may be wrong today, your onc will know.  Anti-depressant treatments have mostly failed in clinical trails against chemo neuropathy, or been only very marginal in effectiveness.  (Diabetic neuropathy medications are mostly based on SSRIs, like Zoloft and Prozac.)

    I take very hot showers, which seems to help a little.  I hope the problem fades rapidly for you after you "ring the bell" following your last cycle.  (Most larger infusion centers have a ship's bell, which is rung by the patient after their last chemo infusion.) 

    Since neuropaty is essentially just 'frayed electrical wires' (nerve endings), foods or supplements that support nerve health might help, but I have not researched this.  Coffee and some other antioxidants are reportedly good in warding off Parkinson's, but I drink at least 5 cups a day and have done so for life, and it has not seemed to help with neuropathy. I also drank huge amounts of black and green teas before getting Lymphoma, so I am just unaware personally of a food remedy for this condition,

    max

     

  • Evarista
    Evarista Member Posts: 325 Member
    Bill1958 said:

    Neuropathy: Help for weak and tingling hands and feet.

    Hi everybaody.  Round 5 of a 6 round regiment of RCHOP is this Monday.  Doing well on most side affects accept neuropathy.  Any information would be deeply appreciated.  BTW, I wondered how Aaron from this thread made out as I haven't heard from him in a while.  Life is love and love is life.

    Personal experience

    Hi Bill, good to see you back and hopefully doing well. Max, as usual, has covered the medical aspect well...I'l go a little more personal.  I finished my chemo (R-EPOCH) one year ago and still have some degree of neuropathy.  Mostly feet, occasionally hands, and for a long while, scalp.  Like Max, it is more numbness than pain, although it was painful early on and gave a continual sensation of cold (socks and hats all the time!).  It has gradually subsided to it's current level and is now just something I live with without much difficulty.  I actually find it a bit useful in that it serves as a kind of "early warning system" for fatigue.  If my feet are showing pronounced neuropathy, I know I have been overdoing it and need to take a rest day. One issue that persists is that of "proprioception":  I don't always know where my feet are. Not a problem unless I'm in a large open space with an undemarcated floor, like an office building lobby.  Then I need to walk more carefully.

    So, expect to see improvement over time.  While I can't eat with chopsticks anymore (hand cramps), this not a huge deal.  I did find it helpful to exercise my hands and feet:  I settled on crocheting (easy to learn and hands don't cramp much), but playing piano would probably be great.  I would find guitar difficult for the chording hand (cramping), but strumming and picking would probably be OK.  Hang in there.

  • AaronW
    AaronW Member Posts: 45
    Bill1958 said:

    Neuropathy: Help for weak and tingling hands and feet.

    Hi everybaody.  Round 5 of a 6 round regiment of RCHOP is this Monday.  Doing well on most side affects accept neuropathy.  Any information would be deeply appreciated.  BTW, I wondered how Aaron from this thread made out as I haven't heard from him in a while.  Life is love and love is life.

    Update

    Hi everyone I hope you all are well!

    My 4th tx was delayed four days until this past Friday. Basically, I have been breaking out with huge abcesses in the worst places, so been on two different antibiotics. Bactrim is the one I currently am on. They had to lower my Prednisone dosage again so now down to 50mg for the five days - which I just finished yesterday. Other than that, I have been fighting major tongue issues and have been trying everything to quell the cuts on my tongue that just are not healing. This time I am eating very bland food and hoping the next few weeks are better than the previous recovery periods. The "chemo-brain" has reared it's ugly head for me, but it seems the strongest during the first week after treatment.

    All in all cannot complain even though there are other minor side-effects all of you have mentioned or discuss. I say this because at least having treatments are an option. Two more to go - Round 5 June 26th if all goes well between now and then. 

    Staying in the fight...that's all we can do!

    Stay safe and well.

    Aaron

  • Evarista
    Evarista Member Posts: 325 Member
    Tongue & mouth

    Hi Aaron, welcome back.  I don't remember if we've discussed this (forgive me if we have), but have your doctors mentioned "Magic Mouthwash"?  It is a prescription formulation of Maalox (or similar), Lidocaine (or similar), and Benadryl.  Worked well for me in soothing my mouth when I was in a lot of pain. You cannot be allergic to lidocaine or other "caines", though.  Now I maintain with over-the-counter Biotine Dry Mouth mouthwash and continue to stay alway from salted nuts, chips, etc. Hope the next round goes well.