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Diffuse Large B cell Lymphoma-Non-Hodgkins is diagnosis

Bill1958's picture
Bill1958
Posts: 61
Joined: Feb 2018

Well after a month of head and neck cancer specialists trying to ID the cancer they found, I am told that it is Lymphoma B cell.  I don't know if it's HL or NHL, what  stage it is or much of anything that helps us find solid hope.  I do know that I have an appoitment with a Doctor that specialises in lyphoma at The Roswell Cancer Institute in Buffalo, NY.   this monday.  The symptoms were a large mass in my neck(about 5 - 7 cm) but I really felt good and was eating and excercising alot until the headaches, stomach aches, mid back aches and the left shoulder aches started about 3 weeks ago and from there the doctors really worked with us to find out what is wrong.  The pain pills work but they are constipating.   I'm 58 years old and a man that loves his family, friends and the entire earth(especially wildlife and wetlands and the like and playing music).  My daughter and wife are supporting me in this 100 percent and that makes it so much easier.  Honestly we are all scared and have done some Dr Goggling.  There is so much information on lyphoma that itis just more confusing to try and learn anything at this point.  

PS.  THis CSN network is my favorite way to vent and learn and hopefully help others in some way over all this cancer monster that is attacking us!

gbread's picture
gbread
Posts: 13
Joined: May 2018

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's picture
ShadyGuy
Posts: 392
Joined: Jan 2017

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's picture
ShadyGuy
Posts: 392
Joined: Jan 2017

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!

NatureGirl714
Posts: 5
Joined: Jun 2018

Actually The CAR T-cell Immunotherapy is approved by the FDA and has been since last fall 2017. You must have had two failed modes of treatment or relapses, before being considered for CAR-T cell Immunotherapy, however. There are currently 52 Healthcare Organizations offering it in the USA according to what I have seen on the Kite Pharma website. There is also second Drug Co offering it too I believe.

I am scheduled to get my T-Cells back (Yescarta) from Kite Pharma after June 29th in Indianapolis at the IU Health Med Simon Cancer Center/ University Hospital. I have been diagnosed with High Grade (CD19, 20, 22 and Max 5 affected) Large B Cell Non Hodgkin Lymphoma (Dx Jan 16th 2017). They initially thought it might be Primary Mediastinal Lung since I had it throughout my lungs and upper lymph nodes, but Mayo confirmed it wasn't after one round of R-CHOP, thus we then switched to E-POCH for 6 rounds. Pet scan was clear, but four months later, it was back. I then underwent two rounds of chemo while preparing for a autolgus stem cell transplant in Feb 2018. Pet Scan showed clear again, but by May, 2018, the lymphoma was back again in in my right lung. Now I am going through four weeks of low dose radiation since the cancer in my right lung is so close to my heart. I should be going in to receive my Living Immunotherapy Yescarta T cells back (we collected them via outpatient apheresis on June 11th, 2018), and I will go in - in a couple of weeks to receive them back. I am feeling well and the cancer has stopped growing, but I am running out of options and feel very good about this new treatment that has been very successful with blood cancers such as Leukemia for children. Oncologists are saying it is the biggest CA Thx to come about since chemo. I realize it is still new and it does come with potentially high complication rates, but the hospitals are prepared for them and learning more everyday. I am a very positive person and believe that will carry me through.  I will update when I know more. 

ShadyGuy's picture
ShadyGuy
Posts: 392
Joined: Jan 2017

good luck with that. Sounds very promising. Just curious - will your regimen require a bone marrow transplant?

i wish you the best of all possible outcomes!

NatureGirl714
Posts: 5
Joined: Jun 2018

Yes, I had a bone marrow transplant (I called it a stem cell transplant - same thing I am told). I had it in Feb of this year. It works well for many patients, but I was not so lucky. Thus now that I have had two modes of treatment, I qualify for the CAR-T cell Immunotherapy. I am undergoing low dose radiation for the first time too - to stop my lung mass from growing and it has. I have two more weeks of radiation and will then undergo three days of low dose chemo to prepare my body to receive the CAR-T cells back which involves possibly a couple of weeks in the hospital though that seems to vary per institution. I can explain more fully if anyone wants more info. Thanks for your support and feedback. Has been quite an experience for someone who has rarely ever been sick. Jill

Evarista
Posts: 256
Joined: May 2017

How great that you are near to a center that has gotten approval. Wishing you the best of luck with it and hope you have an easy time.  We will look for you to be back here in the not too distant future with an update.  

NatureGirl714
Posts: 5
Joined: Jun 2018

Actually, I live in Michigan, but work remotely from Indiana where I lived the first 55 years of my life.  I am 59 years now and have been traveling five hours for treatment over the past fifteen months.  Most of that driving was by myself thus not easy but worth it.  I am in a health network in Indiana with my health insurance and I have family in IN, and that has helped. I also suffer like many on this site from nephrooathy and though it slowly improves in my hands, my feet are pretty almost numb. My main issue is dealing with degenerative disc disease in the lumbar sacral spine area....not sure if it is caused by the radiation or lack of movement coming off the stem cell transplant.... though I am trying to do some exercises to help me with ambulation. Reading the content from all you on this site has been very helpful. Jill

NatureGirl714
Posts: 5
Joined: Jun 2018

Actually, I live in Michigan, but work remotely from Indiana where I lived the first 55 years of my life.  I am 59 years now and have been traveling five hours for treatment over the past fifteen months.  Most of that driving was by myself thus not easy but worth it.  I am in a health network in Indiana with my health insurance and I have family in IN, and that has helped. I also suffer like many on this site from nephrooathy and though it slowly improves in my hands, my feet are pretty almost numb. My main issue is dealing with degenerative disc disease in the lumbar sacral spine area....not sure if it is caused by the radiation or lack of movement coming off the stem cell transplant.... though I am trying to do some exercises to help me with ambulation. Reading the content from all you on this site has been very helpful. Jill

yesyes2
Posts: 583
Joined: Jul 2009

I just want to wish you the best of luck on your upcoming procedure.  Years ago that was a women on this site who received Car T-Cell in a trial for her reurrent NHL.  Sorry I can't furnish you with more information.  Please let us know how everything goes.  You have been through a lot and we pray this treatment is the answer for your continued remission.

NatureGirl714
Posts: 5
Joined: Jun 2018

Yes, she may have been involved in a clinical trial. I am so thankful for everyone before us that helped and became part of those trials. I hope I can help others as well. Thank you for reaching out and your well wishes. Jill

ShadyGuy's picture
ShadyGuy
Posts: 392
Joined: Jan 2017

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.

gbread's picture
gbread
Posts: 13
Joined: May 2018

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. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

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

Bill1958's picture
Bill1958
Posts: 61
Joined: Feb 2018

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!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

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's picture
Bill1958
Posts: 61
Joined: Feb 2018

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's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

[ 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
Posts: 256
Joined: May 2017

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's picture
AaronW
Posts: 45
Joined: Aug 2010

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
Posts: 256
Joined: May 2017

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.

Bill1958's picture
Bill1958
Posts: 61
Joined: Feb 2018

Thanks for the info on this neuropathy issue.  And Aaron I hope your treatments bring less side affects;  I know there are many and in varying degrees.

Max, thanks for the encouraging info in that neuropathy from chemo can get better after treatment ends.  My part time life as a musician depends on my hands and right now they are working about just good enough to get by playing an entire gig.  They seem to be getting weaker and cramping more each time I play.  It seems to me that exercize and water have helped some.  Evarista, your realistic view and experience helps show that regardless we are individuals and symptoms sometimes can't be stopped but adapting can and must happen in many cases.  Thanks again folks!

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