Who here has gone through the stem cell transplant?

bobsbarricades
bobsbarricades Member Posts: 7
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
So I went to my first rescan 3 months after remission and had already relapsed. I did a treatment of ICE, but it didn't work and I had some crazy reactions to it. Now I'm doing ESHAP and holy cow. I'm curious who has gone through the stem cell transplant. What's it like? I'm terrified it get's even worse than ESHAP =,(

I just saw this too

http://www.lymphomation.org/comparing-sct.htm

mortality rates? dang...I would love to get my brothers stem cells - he's healthy as a horse...but 30%?!?!?!?! I wanna talk to my doc. being 25 might help.

Comments

  • vinny59
    vinny59 Member Posts: 1,036 Member
    #2
    stem cell
    Sorry about the relapse, I have not been thru Stem Cell, I was going to suggest talking to your Onc they know best, I do remember reading a post of someone one who went thru that type of treatment. All the best.......... Vinny
  • bobsbarricades
    bobsbarricades Member Posts: 7
    #3
    vinny59 said:

    stem cell
    Sorry about the relapse, I have not been thru Stem Cell, I was going to suggest talking to your Onc they know best, I do remember reading a post of someone one who went thru that type of treatment. All the best.......... Vinny

    thanks for the reply! Maybe
    thanks for the reply! Maybe that person will stop in, but hopefully he's cured and living life so he won't! haha. I have talked with my onc, and there is a separate doctor that I will get passed off to who will be in charge of me during the whole transplant process, I was just... curious what other people have felt about it going through.

    Thanks again!
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
    bobsbarricades said:

    thanks for the reply! Maybe
    thanks for the reply! Maybe that person will stop in, but hopefully he's cured and living life so he won't! haha. I have talked with my onc, and there is a separate doctor that I will get passed off to who will be in charge of me during the whole transplant process, I was just... curious what other people have felt about it going through.

    Thanks again!

    BM Transplant
    Bob,
    What type of lymphoma were you diagnosed with in the beginning and what type have you you been rediagnosed with. Sometimes the diagnosis can change with lymphoma? John
  • bobsbarricades
    bobsbarricades Member Posts: 7
    #5
    it was Nodular Sclerosing
    it was Nodular Sclerosing Hodgkin's the first time and I just know Hodgkin's the second. My doctor said it mutated and we needed to do the stem cell transplant.
  • yesyes2
    yesyes2 Member Posts: 591
    #6
    bobsbarricades said:

    it was Nodular Sclerosing
    it was Nodular Sclerosing Hodgkin's the first time and I just know Hodgkin's the second. My doctor said it mutated and we needed to do the stem cell transplant.

    stem cell transplant
    Hi Bob,

    It's nice to meet you. I am so sorry that you have had a recurrance of you Hodgkin's and are now facing a SCT. I have been told that if my aggressive NHL recurs again I will need a SCT too. We have some one who posts every so often who has recently undergone a SCT. Her name is Natalie14 and the last post on her SCT was 7/20 under newly out of sc. I know she is a young mother and was very scared going in. Have you posted with the LLS as they have a stem cell site which is pretty active.

    Remember you have youth on your side. We have had people on this board who had esharp also, I've heared it is very harsh.

    Has your brother already been tested? Have you been told you will need an Allo transplant, donor transplant, or can you have an Auto transplant, you donate your own stem cells? Autos are much easier to recover from but don't always have as good results.

    Sorry for this long post. Please let us know how you are doing. I'll be sending you lots of positive energy.

    Leslie
  • bobsbarricades
    bobsbarricades Member Posts: 7
    #7
    yesyes2 said:

    stem cell transplant
    Hi Bob,

    It's nice to meet you. I am so sorry that you have had a recurrance of you Hodgkin's and are now facing a SCT. I have been told that if my aggressive NHL recurs again I will need a SCT too. We have some one who posts every so often who has recently undergone a SCT. Her name is Natalie14 and the last post on her SCT was 7/20 under newly out of sc. I know she is a young mother and was very scared going in. Have you posted with the LLS as they have a stem cell site which is pretty active.

    Remember you have youth on your side. We have had people on this board who had esharp also, I've heared it is very harsh.

    Has your brother already been tested? Have you been told you will need an Allo transplant, donor transplant, or can you have an Auto transplant, you donate your own stem cells? Autos are much easier to recover from but don't always have as good results.

    Sorry for this long post. Please let us know how you are doing. I'll be sending you lots of positive energy.

    Leslie

    brother hasn't ben tested
    brother hasn't ben tested yet as we're not at the stage of preparing, still doing the pre stem cell chemo to get rid of the stuff that came back.

    Can anybody tell me what primary refractory disease is and how it is different than just an early relapse? From my understanding, since I came back so soon, I'm refractory. Am I wrong? Please tell me I'm wrong 0.0 lol
  • merrywinner
    merrywinner Member Posts: 626 Member
    #8
    bobsbarricades said:

    brother hasn't ben tested
    brother hasn't ben tested yet as we're not at the stage of preparing, still doing the pre stem cell chemo to get rid of the stuff that came back.

    Can anybody tell me what primary refractory disease is and how it is different than just an early relapse? From my understanding, since I came back so soon, I'm refractory. Am I wrong? Please tell me I'm wrong 0.0 lol

    It is my understanding that you would be considered refractory to the first type of treatment you had. That does not mean you are refractory to them all. But because of your age they want to do the stem cell transplant as they are highly successful in the very young. They will save all the other treatments for your future if you should need them. Best of luck. Mary
  • iml
    iml Member Posts: 5
    #9
    Allogenic Transplant
    My daughter, 35, has just been given the all clear and heading home from the University of Nebraska Med. Center in Omaha. She had Hepatosplenic T-cell lymphoma and underwent IVAC chemo. The cancer went into remission and she had stem cell transplant from her brother. She was in Omaha for 100 days after transplant. Dr. Julie Voss is amazing. The after effects of the chemo were bad but she is doing well now. Prognosis is good so the Lord willing, she will have many years to continue His work here.

    Good luck to you and your journey. At times the cure seems worse than the cancer. Be strong and trust in God. Jeremiah 29:11 sustained our daughter through the bad times.
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #10
    iml said:

    Allogenic Transplant
    My daughter, 35, has just been given the all clear and heading home from the University of Nebraska Med. Center in Omaha. She had Hepatosplenic T-cell lymphoma and underwent IVAC chemo. The cancer went into remission and she had stem cell transplant from her brother. She was in Omaha for 100 days after transplant. Dr. Julie Voss is amazing. The after effects of the chemo were bad but she is doing well now. Prognosis is good so the Lord willing, she will have many years to continue His work here.

    Good luck to you and your journey. At times the cure seems worse than the cancer. Be strong and trust in God. Jeremiah 29:11 sustained our daughter through the bad times.

    Congrats
    Glad to hear she's doing better and on her way to a happy healthy life!

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