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stem cell transplants for non hodgkin lymphoma

D-M-B
Posts: 10
Joined: Oct 2011

Would like to talk to someone who has gone through a stem cell transplant process for lymphoma I am 64 and will be starting right away.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I had an autologous stem cell transplant this summer. I got my new cells June 9th, so it's 4 months out. I am 47. I'd love to help answer any questions I can. I know it's a terrifying idea to contemplate, but it's doable. It was hard and recovery is a long time but take it just a moment at a time.

Hope to talk to you soon!
Beth

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am a 25 year survivor of one of the first batches of stem cell transplants done with bone marrow transplants 22 years ago. I don't know exactly what percentaage was stem cells at that time cause they had just begun to do the bone marrow transplants for lymphomas as previously they only did them for leukemia. I truly think that the stem cell part is why I am having such a long survival time and have long ago been considered cured so take heart. Also you have to understand that all those years ago they used much harsher methods as well and even though it sounds like today's BMT is no walk in the park either it's easier on the bod it seems than decades ago. Cancer can be cured, take heart, I am a living example of that.

Hey Beth? Can you outline how the autologus stem cell transplants are done today? I have always wondered just how much they have changed. I know that today they talk about RCHOP with Rituxin that wasn't around when I had mine. Mine was just a CHOP procedure at first then the transplant on recurrance and a little chemo extra before the transplant then the full shmeel after that with total body rads. Lots of after effects from all of that. But I would be interested in how they do it today if you have a second to type it out for me. Thanks.

Anywho good luck in your upcoming transplant, sorry forget then name of the person who started this topic. Like Beth said, once step at a time. Keep us posted when you can.

Blessings,

Bluerose

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Bluerose,

Mine was all done by blood. I went for apheresis to collect the cells. I had one line where the blood was coming out, then run through a machine to separate the blood, white cells, red cells, platelets, and stem cells. They freeze them. Then one line to put the rest back into me. They ran through all the blood in my body 7 times.

Then I did 5 days of BEAC chemo to kill my immune system. Got a 2 day rest and then they just re-infused the frozen cells. The actual transplant only took at most 10 minutes. I had to go to the clinic everyday for several weeks to check my levels and such. I did have to have 2 blood transfusions and 2 platelet transfusions.

The rest of the time has pretty much been just resting to let my body recover. I think at my 6 month checkup they will start my childhood immunizations again. I guess my body is like an infant at this point.

Well, I need to get back to work.
Take care,
Beth

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I bet they are glad to have you back at work and you are feeling blessed every day to be able to go. Thinking of you Joanie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Wow. They took out my bone marrow in surgery but it wasnt good quality so they had to do it twice. Then it was frozen. Then they hit me with total body radiation and mega chemo which all made me so sick I had to be in isolation in hospital for almost 2 months. That was standard because basically I had zero immune system for a long time. I got all kinds of blood cells and other things and I was on intravenous food for a long time. I got mouth ulcers from the treatments that made any food feel like glass. It was nasty.

I suffered congestive heart failure and nearly bit the dust right there in isolation. Some of the chemo damaged my heart too so I have struggled with that ever since and had an emergency pacemaker implanted for it in 2005. The last two years have been much better, heartwise.

Sounds like a major change in transplants, hard to believe it sounds like an outpatient type of treatment where before it was like 2 months in isolation. I understand that they don't do total body radiation anymore, or at least as often as maybe they do use it for other treatments - don't know, but I have a ton of side effects from it all. They learn as time goes on I suppose.

Longevity is the prize but for some long term survivors of harsher treatments there is a definite price to pay.

All the best and thanks for the explanation Beth.

Bluerose

D-M-B
Posts: 10
Joined: Oct 2011

Beth thenk you so much for answering me. I am going through D-Hap chemo now to shrink a tumor before the transplant. I have not been feeling so well in the first week. Am now dealing with flu like symptoms which is a side effect. After this I think that I have some idea of what to face....takes a deep breath working it out, knowing it is a small part of my life but intense. For all of your best wishes and input I thank you from the bottom of my heart

Donna

D-M-B
Posts: 10
Joined: Oct 2011

Beth thenk you so much for answering me. I am going through D-Hap chemo now to shrink a tumor before the transplant. I have not been feeling so well in the first week. Am now dealing with flu like symptoms which is a side effect. After this I think that I have some idea of what to face....takes a deep breath working it out, knowing it is a small part of my life but intense. For all of your best wishes and input I thank you from the bottom of my heart

Donna

D-M-B
Posts: 10
Joined: Oct 2011

Beth thenk you so much for answering me. I am going through D-Hap chemo now to shrink a tumor before the transplant. I have not been feeling so well in the first week. Am now dealing with flu like symptoms which is a side effect. After this I think that I have some idea of what to face....takes a deep breath working it out, knowing it is a small part of my life but intense. For all of your best wishes and input I thank you from the bottom of my heart

Donna

D-M-B
Posts: 10
Joined: Oct 2011

Beth thenk you so much for answering me. I am going through D-Hap chemo now to shrink a tumor before the transplant. I have not been feeling so well in the first week. Am now dealing with flu like symptoms which is a side effect. After this I think that I have some idea of what to face....takes a deep breath working it out, knowing it is a small part of my life but intense. For all of your best wishes and input I thank you from the bottom of my heart

Donna

D-M-B
Posts: 10
Joined: Oct 2011

Beth thenk you so much for answering me. I am going through D-Hap chemo now to shrink a tumor before the transplant. I have not been feeling so well in the first week. Am now dealing with flu like symptoms which is a side effect. After this I think that I have some idea of what to face....takes a deep breath working it out, knowing it is a small part of my life but intense. For all of your best wishes and input I thank you from the bottom of my heart

Donna

D-M-B
Posts: 10
Joined: Oct 2011

Beth thenk you so much for answering me. I am going through D-Hap chemo now to shrink a tumor before the transplant. I have not been feeling so well in the first week. Am now dealing with flu like symptoms which is a side effect. After this I think that I have some idea of what to face....takes a deep breath working it out, knowing it is a small part of my life but intense. For all of your best wishes and input I thank you from the bottom of my heart

Donna

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Take heart lady, it will get better! I know the beginning parts of the transplant with pre-chemo treatments really were the pitts. I did a couple rounds of RICE first and I almost think some of that was worse.

Every day you start feeling a little better makes you feel so much better. It's going to take time to get your strength back, just know it gets more and more tolerable.

Rest every chance you get.

Take care,
Beth

coachmike
Posts: 147
Joined: Oct 2011

I am getting an auto stem cell transplant in a few weeks, i would really appreciate any feedback you can offer about what to expect for the recovery time

gmusgrove
Posts: 15
Joined: Mar 2009

coachmike

I had a auto stem cell transplant back in 09/2008 for Mantle Cell Lymphoma. I had 6 rounds of R CHOP; then went to Baylor University Medical Center in Dallas for the transplant. First thing was I received a port, then had 5 days of Neupogen shots to make my bone marror to produce stem cells. Then I went through Aphaeresis (cell collecting). They needed a certain amount of stem cells collected for the transplant. So people have to have one, or two or three days of collection. I was bless that I only had one. There is side effects to the Neupogen shots that make your joints hurt. After the collection I was given BEAM chemo for 6 days. Then I had a day of rest and then they infused the stem cells back into me. After the stem cells was infused I stayed in Dallas for 2 1/2 weeks to
recover from the chemo and the stem cells to recover. I lost all my hair and was very week and tired for many days after the transplant.

I was in remission from the cancer until October 2011. I will now have to go through a Allo transplant this summer.

Pray that all goes well with your transplant.

gmusgrove

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I hope your transplant is totally successful and you are feeling better soon God bless you on this journey Joanie

nsouliere
Posts: 2
Joined: Oct 2011

my 61 year old husband had an allogenic stem cell transplant on sept. 3, 2011. He has had one minor brush with graft vs host disease but otherwise is doing well. i will help you if i can.

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