Diffuse Large B cell Lymphoma-Non-Hodgkins is diagnosis

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.

 

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

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

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.

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.

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.

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 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 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!

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!

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!

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 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.

[ 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

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.

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