R-ICE and Autologous Stem Cell Transplant experiences?

Schembrak

Hi, my name is Kaitlyn, I just found out that my cancer has returned. My Oncologist is scheduling another biopsy to make sure of the type of cancer, which less than a year ago I was going through R-CHOP for stage 4b NLPHL. He has already told me what the treatment plan will be no matter what it comes back as. He wants to do R-ICE for 3cycles with 3 days in the hospital each round. Then, do a stem cell transplant using my own cells. I am a ball of nerves, because I have no idea what to expect. What was your experiences with these? And, how did you cover it all financially? Is the RICE much worse than the RCHOP? And what/how did/were the steps for the transplan? Thank you for any feed back. I'm so nervous. During the transplant, was your family able to come see you while in the hospital?

Thank you, 

Kaitlyn

Sal0101

SCT

hello Kaitlyn, 

I had DLBCL that relapsed after 5 months.  The next line of treatment was R- ICE and an Autologous stem cell transplant.  R-ICE is doable.  I also was in the hospital for a few days with each treatment.  I Had a few blood transfusions and was very tired, but all was manageable.  I walked the halls and had visitors as long as they weren’t sick.

They didn’t have any trouble getting enough of my my stem cells. It was actually a piece of cake. 

 I’m  one year out on my stem cell transplant. I was in the hospital for about 3 weeks and had a few visitors.  Each hospital and team has their own protocol with visitors.  My husband and daughter took turns because my hospital was not in my home town. My son visited and my sister, but quite frankly there were times I just wanted to rest with no one around. I did lose my appetite and was very tired, but always had enough energy to walk the halls, visit the outside gardens, shower, read and learn new games on my I-Pad.  I’m sure if you look back on a lot of the old feeds you’ll find a lot of information that I can’t even remember now!  You look young and strong! You can do it!  

I was lucky and had insurance through my employer that covered my treatments. 

This forum was a huge help for me.  There are a lot of very smart people on here!  Stay in touch with us! 

Sharon

Schembrak

Sal0101 said:

SCT

hello Kaitlyn, 

I had DLBCL that relapsed after 5 months.  The next line of treatment was R- ICE and an Autologous stem cell transplant.  R-ICE is doable.  I also was in the hospital for a few days with each treatment.  I Had a few blood transfusions and was very tired, but all was manageable.  I walked the halls and had visitors as long as they weren’t sick.

They didn’t have any trouble getting enough of my my stem cells. It was actually a piece of cake. 

 I’m  one year out on my stem cell transplant. I was in the hospital for about 3 weeks and had a few visitors.  Each hospital and team has their own protocol with visitors.  My husband and daughter took turns because my hospital was not in my home town. My son visited and my sister, but quite frankly there were times I just wanted to rest with no one around. I did lose my appetite and was very tired, but always had enough energy to walk the halls, visit the outside gardens, shower, read and learn new games on my I-Pad.  I’m sure if you look back on a lot of the old feeds you’ll find a lot of information that I can’t even remember now!  You look young and strong! You can do it!  

I was lucky and had insurance through my employer that covered my treatments. 

This forum was a huge help for me.  There are a lot of very smart people on here!  Stay in touch with us! 

Sharon

Thank you Sharon for

Thank you Sharon for respondin, were you able to physically work during the R-ICE or did it make you too tired and weak to be able to work?

Sal0101

Working

I did work through R-ICE. I worked for an Ophthalmology group that allowed me to work from home Most of the time, and I actually did some work while in the hospital. I was very concerned about picking up any infections from other people, which is why I didn’t want to go into the office.  If it would have been a job that I was on my feet all day and around other people on a regular basis I don’t think I would have been able to do it.  

Sandy Ray

Kaitlyn,

I was diagnosed in February with Nlphl and had 6 rounds of RCHOP. My last PET scan showed some activity and I have an appointment at MD Anderson this Thursday.  I will be praying for you. I am hoping mine is a false positive but may be headed down the same road as you. Please post as much as you feel at liberty about your journey. 

Sandy Ray

po18guy

Kinda sorta similar experience

I avoided R-ICE by not having a B-Cell Lymphoma. However, I did receive a less toxic, outpatient alternative to ICE. It is called TREC and consists of Treanda (Bendamustine), Rituxan, Etoposide and Carboplatin. It removes the more toxic Ifosfamide from the combination and replaces it with less toxic Bendamustine (Treanda). It is given out-patient rather than in-patient, so a huge cost savings. In my case, the Rituxan was omitted, as it has no effect against T-Cell Lymphomas. I have only my personal anecdote, but it eliminated two dozen heavily pre-treated, refractory tumors and small intestine involvement in just two infusions. I went on to allo transplant, and was cleared for a single, rather than the planned tandem (auto+allo) transplant. 

Speaking of which, autologous transplants are hard going into because one's marrow must be completely ablated (destroyed), but easier coming out of, due to the virtual guarantee of cell engraftment as well as lack of graft-versus-host-disease, a fatal comlplication in 10-20% of allogeneic transplants. Allogeneic transplants are easier going into as the conditioning regimen is easier and leaves some of one's own immune system to carry on while the transplanted cells engraft. However, allogeneic transplants are harder coming out of, since one is not guaranteed that the donor cells will engraft, and once they engraft, graft-versus-host-disease (GvHD) is almost guaranteed. However, it is not completely negative, as it also will probably bring with it the graft-versus-lymphoma effect, in which the donor cells quickly recognize and destroy any remaining lymphoma cells in one's body. That has been my experience now, two years post transplant and no sign of either lymphoma.

Schembrak

Sandy Ray said:

Kaitlyn,

I was diagnosed in February with Nlphl and had 6 rounds of RCHOP. My last PET scan showed some activity and I have an appointment at MD Anderson this Thursday.  I will be praying for you. I am hoping mine is a false positive but may be headed down the same road as you. Please post as much as you feel at liberty about your journey. 

Sandy Ray

I certainly will post as much

I certainly will post as much about it as possible. First, they are going to do a biopsy and then make a plan to start the chemo. I'll post how it goes. I like how some people on here give a day to day experience on here, and I will do the same, as there has not been a lot of experience posted on here about both treatments.

kdunagin

Thank you for this forum

I am new here. Just signed up a few days ago. 

I was diagnoed with Diffuse Large B-Cell Lymphoma in Summer 2015. The doctor did not tell me exactly which stage. But it did not spread anywhere. It was a swollen node at the base of the skull (right side) only. Had gone through 3 rounds of RCHOP and radiation. I was in remission for 2 years until last week when the blood test came back with everything negative except for LDH shot up so high. It was normal, hovered between 140-212, even before the first chemo. After the last chemo, it was the highest (200+) But last week, it was 359. My oncologist scheduled me to have the lab works done again in 3 weeks to make sure. But if it actually comes back, I am well ready for it. 

That is why I am so glad to see this forum. Now, I know what to expect. Thank you, Kaitlyn, for starting it. Thank you, Sal, for sharing your experience. And po, last night I read all you posts and read about your experiences. You are such an inspiration. Sandy, I hope yours is a false positive too. The same as mine, my Oncologist told me that there were several reasons LDH was elevated. I had a urinary tract infection about 3 weeks before the blood works. I don't know if that can be a cause of it or not. I also cut my 2 fingers with a weed eater, by accident, of course. They both bred so badly and took several days to heal. I don't know if that considered cell damage and caused the LDH to elevate or not. You know, when you deal with this big C, all kinds of crazy thoughts came to mind. 

po18guy

kdunagin said:

Thank you for this forum

I am new here. Just signed up a few days ago. 

I was diagnoed with Diffuse Large B-Cell Lymphoma in Summer 2015. The doctor did not tell me exactly which stage. But it did not spread anywhere. It was a swollen node at the base of the skull (right side) only. Had gone through 3 rounds of RCHOP and radiation. I was in remission for 2 years until last week when the blood test came back with everything negative except for LDH shot up so high. It was normal, hovered between 140-212, even before the first chemo. After the last chemo, it was the highest (200+) But last week, it was 359. My oncologist scheduled me to have the lab works done again in 3 weeks to make sure. But if it actually comes back, I am well ready for it. 

That is why I am so glad to see this forum. Now, I know what to expect. Thank you, Kaitlyn, for starting it. Thank you, Sal, for sharing your experience. And po, last night I read all you posts and read about your experiences. You are such an inspiration. Sandy, I hope yours is a false positive too. The same as mine, my Oncologist told me that there were several reasons LDH was elevated. I had a urinary tract infection about 3 weeks before the blood works. I don't know if that can be a cause of it or not. I also cut my 2 fingers with a weed eater, by accident, of course. They both bred so badly and took several days to heal. I don't know if that considered cell damage and caused the LDH to elevate or not. You know, when you deal with this big C, all kinds of crazy thoughts came to mind. 

LDH indicates tissue breakdown.

Your words are very kind. LDH is consistent with cancer, but is far from diagnostic. The tissue breakdown which leads to elevated LDH can come from common infection, injury or even exercise. You have recently experienced two or three of these factors, so let us hope for the best. No time to be alarmed just yet - as much as that seems impossible. Still, your atitude is very good. Cancer is the bully who has just walked into the room. When it steps in, even though we may not be born fighters, the fight has been brougt to us. 

Sandy Ray

kdunagin said:

Thank you for this forum

I am new here. Just signed up a few days ago. 

I was diagnoed with Diffuse Large B-Cell Lymphoma in Summer 2015. The doctor did not tell me exactly which stage. But it did not spread anywhere. It was a swollen node at the base of the skull (right side) only. Had gone through 3 rounds of RCHOP and radiation. I was in remission for 2 years until last week when the blood test came back with everything negative except for LDH shot up so high. It was normal, hovered between 140-212, even before the first chemo. After the last chemo, it was the highest (200+) But last week, it was 359. My oncologist scheduled me to have the lab works done again in 3 weeks to make sure. But if it actually comes back, I am well ready for it. 

That is why I am so glad to see this forum. Now, I know what to expect. Thank you, Kaitlyn, for starting it. Thank you, Sal, for sharing your experience. And po, last night I read all you posts and read about your experiences. You are such an inspiration. Sandy, I hope yours is a false positive too. The same as mine, my Oncologist told me that there were several reasons LDH was elevated. I had a urinary tract infection about 3 weeks before the blood works. I don't know if that can be a cause of it or not. I also cut my 2 fingers with a weed eater, by accident, of course. They both bred so badly and took several days to heal. I don't know if that considered cell damage and caused the LDH to elevate or not. You know, when you deal with this big C, all kinds of crazy thoughts came to mind. 

False positive

Well had another PET scan and Ct with contrast at MD Anderson. They said NED ( no evidence of disease) full remission. That was good to hear. Now back home and back to work.

One huge lesson I have learned from cancer is enjoy every day and the people you have in your life. None of us are guaranteed a tomorrow.

Kdunagin I am praying your news is good as well. 

While at MD Anderson I did discuss with the Dr what my next course of action was if and when I relapse. He said as of now would be stem cell transplant. However he said CAR-T cell treatment he felt would have FDA approval by end of the year and they are having some promising results. They are learning more everyday and new treatments are always coming. 

Thanks for all the prayers and well wishes.

Sandy Ray

kdunagin

po18guy said:

LDH indicates tissue breakdown.

Your words are very kind. LDH is consistent with cancer, but is far from diagnostic. The tissue breakdown which leads to elevated LDH can come from common infection, injury or even exercise. You have recently experienced two or three of these factors, so let us hope for the best. No time to be alarmed just yet - as much as that seems impossible. Still, your atitude is very good. Cancer is the bully who has just walked into the room. When it steps in, even though we may not be born fighters, the fight has been brougt to us. 

Thank you po

Thank you, Po, for your support. The worst part for me is not knowing for sure what it is. Once I know, either good or bad, then I am ready for the next step. My husband died of Glioblastoma. So, to me, it has been quite a roller coaster ride.

kdunagin

Sandy Ray said:

False positive

Well had another PET scan and Ct with contrast at MD Anderson. They said NED ( no evidence of disease) full remission. That was good to hear. Now back home and back to work.

One huge lesson I have learned from cancer is enjoy every day and the people you have in your life. None of us are guaranteed a tomorrow.

Kdunagin I am praying your news is good as well. 

While at MD Anderson I did discuss with the Dr what my next course of action was if and when I relapse. He said as of now would be stem cell transplant. However he said CAR-T cell treatment he felt would have FDA approval by end of the year and they are having some promising results. They are learning more everyday and new treatments are always coming. 

Thanks for all the prayers and well wishes.

Sandy Ray

good news

That is a very good news, Sandy. You are so right that none of us are guaranteed a tomorrow. And that they are learning more everyday and new treatments are always coming. 

po18guy

Warren Zevon

After his diagnosis with mesothelioma, said on the David Letterman show, "Enjoy every sandwich." Awfully hard to argue with that.

illead

Hi Sandy Ray

Bill's doctor also said they were hoping for Car-T cell therapy to soon be released by the FDA.  The patient has to be relapsed though and since Bill is back in remission, they are happy with that because it gives more time for perfecting it.  My worry is if medicare will pay for it and will there be limitations on age.  We are so thankful that he is in remission again but it seems like a catch-22, MCL is incurable and he will relapse again but Dr. Wang is very hopeful that Car-t is the cure, but Bill can't have it until all else fails.  At least we are in the best hands and we just go on enjoying sandwiches .

My best to all,

Becky 

Schembrak

Sandy Ray said:

False positive

Well had another PET scan and Ct with contrast at MD Anderson. They said NED ( no evidence of disease) full remission. That was good to hear. Now back home and back to work.

One huge lesson I have learned from cancer is enjoy every day and the people you have in your life. None of us are guaranteed a tomorrow.

Kdunagin I am praying your news is good as well. 

While at MD Anderson I did discuss with the Dr what my next course of action was if and when I relapse. He said as of now would be stem cell transplant. However he said CAR-T cell treatment he felt would have FDA approval by end of the year and they are having some promising results. They are learning more everyday and new treatments are always coming. 

Thanks for all the prayers and well wishes.

Sandy Ray

CAR-T

What is CAR-T?

Max Former Hodgkins Stage 3

Schembrak said:

CAR-T

What is CAR-T?

Overview

Schem,

This is a good overview of CAR-T, and where it is at presently as a potential treatment.  It's value is currently predicted mostly against blood cancers, but who knows. It may later show promise even against organ cancers also. When any new cancer drug is approved, it's eventual value is mostly unknown and yet to be discovered.

Technically, it apparantly works mostly with the CD-19 cell against NHL cells like CD20, CD30, and others. 

max

https://www.cancer.gov/about-cancer/treatment/research/car-t-cells

Max Former Hodgkins Stage 3

po18guy said:

Warren Zevon

After his diagnosis with mesothelioma, said on the David Letterman show, "Enjoy every sandwich." Awfully hard to argue with that.

Sandwich

Po,

Like you (as you know) I'm a Christian, but I've studied Buddhism extensively.  Much of his insights involve what we might dub "total simplicity": focusing on the moment in a radical manner.  On of his greatest Sutras (sermons), for instance, is entitled In and Out breathing...a discussion of how to meditate at length on nothing but breathing.

A professor of mine in college from China told the class one day that a great sage once observed to him regarding Americans: 

"The have such deep lines in their faces at such a young age. They are always rushing everywhere they go, they never relax, they seem to have no peace.   Watch them even eating breakfast: they do not enjoy, they read the paper or are on the phone, even then. They are unable for breakfast to just be breakfast.   They cannot do one thing at once, ever."

When I was in Scotland in the 80s, I was in a bookstore one afternoon, on a Wednesday. The clerk came up and told me they were closing. I asked why they would close at noon on a Wednesday, and she replied,  "Why would we not ?"   A few years later I was in Portsmouth, England, and I was hoping for that relaxed world view again, but discovered they had been Americanized: The poeple grabbed fast food at McDOnald's and rushed everywhere.  I hope Scotland is still isolated enough to remain Scotland.

Enjoy your sandwiches folks.

max

lindary

Sandy Ray said:

False positive

Well had another PET scan and Ct with contrast at MD Anderson. They said NED ( no evidence of disease) full remission. That was good to hear. Now back home and back to work.

One huge lesson I have learned from cancer is enjoy every day and the people you have in your life. None of us are guaranteed a tomorrow.

Kdunagin I am praying your news is good as well. 

While at MD Anderson I did discuss with the Dr what my next course of action was if and when I relapse. He said as of now would be stem cell transplant. However he said CAR-T cell treatment he felt would have FDA approval by end of the year and they are having some promising results. They are learning more everyday and new treatments are always coming. 

Thanks for all the prayers and well wishes.

Sandy Ray

SCT

A little over a year ago I was told that the plans for me having a SCT was being put on a permanent hold. Since we had harvested some stem cells already I asked how long those wold be held. The Dr told me about 8 years but said not to worry. If my cancer came back there wold probably be new treatments with different drugs to fight it. CAR-T is one of those probabilities.