Diffuse Large B cell Lymphoma-Non-Hodgkins is diagnosis

Bill1958

Thanks for the information

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!

May 1

Bill1958 said:

Thanks everybody: Good luck to you, to them and to me!

As I prepare to make the 3 hour drive for treatments, I wish to say good luck to all.  Life is love and love is life. 

PS:  I will be on here again soon as I will be needing to talk to help ease my worried mind!

Bill, in another passage, it's...

"life is the school, love is the lesson" (did you start this thread/blog?)

Bill1958

May 1 said:

Bill, in another passage, it's...

"life is the school, love is the lesson" (did you start this thread/blog?)

no I did not

No I did not start that thread but that is well said.  Love is always the answer in my book!

 

Unknown

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.

 

Hi Bill,

Hi Bill,

Came across this comment this afternoon and wanted to share in your relief with such positive results.  YAY!

My Terry has had two RCHOP treatments and we discovered from viewing his blood tests that his LDH level is now within normal limits.  Our lab sets the maximum at 220.  Terry's, we found out, was "only" at 226 before his first treatment, after they surgically reomved the tumor in his abdomen in April.  That tells me that his lymphoma wasn't necessarily "off the charts" to begin with.  After only one hit, it dropped to 185; so, we're finding a level of assurance that his treatments will also bring him into remission.  Of course, we won't know with any degree of certainty until they do the repeat PET at the end of July; but this news encouraged us a great deal.  Do you happen to know what your beginning LDH level was and where it may be now?

Just curious if you've ever come across this one result or not.

Thanks!

Dawn

NatureGirl714

ShadyGuy said:

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!

CAR T-Cell Immunotherapy is FDA approved!

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

NatureGirl714 said:

CAR T-Cell Immunotherapy is FDA approved!

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. 

Wow!

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!

Evarista

NatureGirl714 said:

CAR T-Cell Immunotherapy is FDA approved!

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. 

Wishing you luck

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.  

yesyes2

NatureGirl714 said:

CAR T-Cell Immunotherapy is FDA approved!

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. 

Upcoming procedure

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

ShadyGuy said:

Wow!

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!

Yes, I had a bone marrow

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

NatureGirl714

Evarista said:

Wishing you luck

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.  

Actually, I live in Michigan,

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

Evarista said:

Wishing you luck

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.  

Actually, I live in Michigan,

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

yesyes2 said:

Upcoming procedure

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.

Thank you!

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