Stem Cell Transplant

dixiegirl
dixiegirl Member Posts: 1,043 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1
This is in my future, will have to do Treanda first to get back to remission though. I would love to get some input from anyone who has done both the treanda and the SCT.

I am scared, and just trying to get some information from those warriors who've been through it.

My armpit is still killing me, but I know it's going to take time to heal. I just wish it would hurry up lol.

Take care
Beth

Comments

  • evanslyke
    evanslyke Member Posts: 2
    #2
    My SCT Experience
    Beth,

    I recently finished BEAM with a autologous SCT. Although it sounds like my chemo regime was different than yours, I can tell you my stem cell trans went really well. I am 29, recurrent Hodgkin's, and finished active treatment a month ago. I feel great, no complications so far (fingers crossed). I just get really tired when I exert myself.

    I was also very scared when I heard I was going to get a SCT. Although it is a serious procedure I was re-assured that it had been successfully done for many years. For me the worst part of the ordeal was being away from friends/family/pets for so long - and around the holiday time! I live four hours away from where I went to get treatment (UC SanFrancisco Medical Center) so it was difficult for my family or friends to visit me. I was only allowed on the transplant floor for my stay (two different three week stints), so the isolation was something that got me down. The upsides are there were great family rooms for when people got to visit, the nurses were awesome!, you are encouraged to exercise (I got a stationary bike in my room), free movies, internet, good cell phone service, and I got to order off the pediatric menu which meant pizza, chicken nuggets, etc. Which were much better tasting than dry chicken breast or stringy meat. There was a chaplain who was great to talk to, even though I am NOT religious. The nurses would spend a little extra time and talk with me also. When I finished my transplant I got a cake and they sang a song to celebrate my new start on life.

    I did have some complications during my hospital stay, but my medical team was right on top of it. You will have days where you feel awful, but I never threw up from treatment. I was able to sleep well most nights, and they have a pull out bed for a family member to use so they can stay in your room with you. I was embarrassed to have the nurses helping me shower and use the toilet at first. But they work in oncology because they have great personalities and compassion. Plus they get paid really well and love their jobs. Remember everybody poops! Since you are in the hospital for such an extended period of time you will often have the same nurses and they get very attached!

    Overall I would let you know that getting a SCT is scary, but so was your first set of chemo treatments (assuming you had them). So my best suggestion would be to educate yourself and get a good therapist/social worker. UCSF has a good website explaining what your transplant stay will be like. I assume the procedure will be similar where ever you have your treatment done. Having an objective person to hash out your fears with is really valuable. Bring lots of things to keep you busy: laptop/iPad it a MUST, FB will be your best friend, movies, magazines, knitting, scrap booking. It also helped me to make goals of what I wanted to do when I was done. Right now I am planning a trip to New Zealand. Give yourself something to look forward too.

    Best of luck!
    Eleanor
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #3
    evanslyke said:

    My SCT Experience
    Beth,

    I recently finished BEAM with a autologous SCT. Although it sounds like my chemo regime was different than yours, I can tell you my stem cell trans went really well. I am 29, recurrent Hodgkin's, and finished active treatment a month ago. I feel great, no complications so far (fingers crossed). I just get really tired when I exert myself.

    I was also very scared when I heard I was going to get a SCT. Although it is a serious procedure I was re-assured that it had been successfully done for many years. For me the worst part of the ordeal was being away from friends/family/pets for so long - and around the holiday time! I live four hours away from where I went to get treatment (UC SanFrancisco Medical Center) so it was difficult for my family or friends to visit me. I was only allowed on the transplant floor for my stay (two different three week stints), so the isolation was something that got me down. The upsides are there were great family rooms for when people got to visit, the nurses were awesome!, you are encouraged to exercise (I got a stationary bike in my room), free movies, internet, good cell phone service, and I got to order off the pediatric menu which meant pizza, chicken nuggets, etc. Which were much better tasting than dry chicken breast or stringy meat. There was a chaplain who was great to talk to, even though I am NOT religious. The nurses would spend a little extra time and talk with me also. When I finished my transplant I got a cake and they sang a song to celebrate my new start on life.

    I did have some complications during my hospital stay, but my medical team was right on top of it. You will have days where you feel awful, but I never threw up from treatment. I was able to sleep well most nights, and they have a pull out bed for a family member to use so they can stay in your room with you. I was embarrassed to have the nurses helping me shower and use the toilet at first. But they work in oncology because they have great personalities and compassion. Plus they get paid really well and love their jobs. Remember everybody poops! Since you are in the hospital for such an extended period of time you will often have the same nurses and they get very attached!

    Overall I would let you know that getting a SCT is scary, but so was your first set of chemo treatments (assuming you had them). So my best suggestion would be to educate yourself and get a good therapist/social worker. UCSF has a good website explaining what your transplant stay will be like. I assume the procedure will be similar where ever you have your treatment done. Having an objective person to hash out your fears with is really valuable. Bring lots of things to keep you busy: laptop/iPad it a MUST, FB will be your best friend, movies, magazines, knitting, scrap booking. It also helped me to make goals of what I wanted to do when I was done. Right now I am planning a trip to New Zealand. Give yourself something to look forward too.

    Best of luck!
    Eleanor

    Stem cell
    What all is involved with a stem cell transplant? I read about it but don't know what all is involved or what the actual proceedure is. Figured it would be best to ask a person that has gone thru it. John(FNHL-1-4A-5/10)
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #4
    evanslyke said:

    My SCT Experience
    Beth,

    I recently finished BEAM with a autologous SCT. Although it sounds like my chemo regime was different than yours, I can tell you my stem cell trans went really well. I am 29, recurrent Hodgkin's, and finished active treatment a month ago. I feel great, no complications so far (fingers crossed). I just get really tired when I exert myself.

    I was also very scared when I heard I was going to get a SCT. Although it is a serious procedure I was re-assured that it had been successfully done for many years. For me the worst part of the ordeal was being away from friends/family/pets for so long - and around the holiday time! I live four hours away from where I went to get treatment (UC SanFrancisco Medical Center) so it was difficult for my family or friends to visit me. I was only allowed on the transplant floor for my stay (two different three week stints), so the isolation was something that got me down. The upsides are there were great family rooms for when people got to visit, the nurses were awesome!, you are encouraged to exercise (I got a stationary bike in my room), free movies, internet, good cell phone service, and I got to order off the pediatric menu which meant pizza, chicken nuggets, etc. Which were much better tasting than dry chicken breast or stringy meat. There was a chaplain who was great to talk to, even though I am NOT religious. The nurses would spend a little extra time and talk with me also. When I finished my transplant I got a cake and they sang a song to celebrate my new start on life.

    I did have some complications during my hospital stay, but my medical team was right on top of it. You will have days where you feel awful, but I never threw up from treatment. I was able to sleep well most nights, and they have a pull out bed for a family member to use so they can stay in your room with you. I was embarrassed to have the nurses helping me shower and use the toilet at first. But they work in oncology because they have great personalities and compassion. Plus they get paid really well and love their jobs. Remember everybody poops! Since you are in the hospital for such an extended period of time you will often have the same nurses and they get very attached!

    Overall I would let you know that getting a SCT is scary, but so was your first set of chemo treatments (assuming you had them). So my best suggestion would be to educate yourself and get a good therapist/social worker. UCSF has a good website explaining what your transplant stay will be like. I assume the procedure will be similar where ever you have your treatment done. Having an objective person to hash out your fears with is really valuable. Bring lots of things to keep you busy: laptop/iPad it a MUST, FB will be your best friend, movies, magazines, knitting, scrap booking. It also helped me to make goals of what I wanted to do when I was done. Right now I am planning a trip to New Zealand. Give yourself something to look forward too.

    Best of luck!
    Eleanor

    Thank you
    Eleanor,

    I am glad you are doing so well. Ok, have a goofy question here. What do you mean by needing help to go to the bathroom and shower? Were you that weak for a while? Yes I did have chemo in 2006 and radiation in 2007, rituxan & maintenance 2010, and relapsed and progressed with nhl while on maintenance.

    This is 4 times in 5 years so I am ready for a long remission. My onc says I have an 80% chance of 5-6 year remission. Sounds great to me.

    I am scared, but I'll be ok.

    Thanks again,
    Beth
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #5
    evanslyke said:

    My SCT Experience
    Beth,

    I recently finished BEAM with a autologous SCT. Although it sounds like my chemo regime was different than yours, I can tell you my stem cell trans went really well. I am 29, recurrent Hodgkin's, and finished active treatment a month ago. I feel great, no complications so far (fingers crossed). I just get really tired when I exert myself.

    I was also very scared when I heard I was going to get a SCT. Although it is a serious procedure I was re-assured that it had been successfully done for many years. For me the worst part of the ordeal was being away from friends/family/pets for so long - and around the holiday time! I live four hours away from where I went to get treatment (UC SanFrancisco Medical Center) so it was difficult for my family or friends to visit me. I was only allowed on the transplant floor for my stay (two different three week stints), so the isolation was something that got me down. The upsides are there were great family rooms for when people got to visit, the nurses were awesome!, you are encouraged to exercise (I got a stationary bike in my room), free movies, internet, good cell phone service, and I got to order off the pediatric menu which meant pizza, chicken nuggets, etc. Which were much better tasting than dry chicken breast or stringy meat. There was a chaplain who was great to talk to, even though I am NOT religious. The nurses would spend a little extra time and talk with me also. When I finished my transplant I got a cake and they sang a song to celebrate my new start on life.

    I did have some complications during my hospital stay, but my medical team was right on top of it. You will have days where you feel awful, but I never threw up from treatment. I was able to sleep well most nights, and they have a pull out bed for a family member to use so they can stay in your room with you. I was embarrassed to have the nurses helping me shower and use the toilet at first. But they work in oncology because they have great personalities and compassion. Plus they get paid really well and love their jobs. Remember everybody poops! Since you are in the hospital for such an extended period of time you will often have the same nurses and they get very attached!

    Overall I would let you know that getting a SCT is scary, but so was your first set of chemo treatments (assuming you had them). So my best suggestion would be to educate yourself and get a good therapist/social worker. UCSF has a good website explaining what your transplant stay will be like. I assume the procedure will be similar where ever you have your treatment done. Having an objective person to hash out your fears with is really valuable. Bring lots of things to keep you busy: laptop/iPad it a MUST, FB will be your best friend, movies, magazines, knitting, scrap booking. It also helped me to make goals of what I wanted to do when I was done. Right now I am planning a trip to New Zealand. Give yourself something to look forward too.

    Best of luck!
    Eleanor

    Great post Eleanor!
    Hi Eleanor,
    I have to say your post is one of the most informative and supportive posts I've read. I'm sure Beth will really appreciate you sharing your SCT experience. Best wishes for continued success and no complications. Sue..(FNHL-2-3A-6/10)
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #6
    COBRA666 said:

    Stem cell
    What all is involved with a stem cell transplant? I read about it but don't know what all is involved or what the actual proceedure is. Figured it would be best to ask a person that has gone thru it. John(FNHL-1-4A-5/10)

    Fred Hutchinson Cancer Center
    Hi John,
    Here is a web site you can go to and read about SCT. Fred Hutchinson Cancer Center in Seattle Washington is considered "the" best in the world for this procedure.
    Sue..(FNHL-2-3A-6/10)
    SeattleCCA.org/BoneMarrowTransplant
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #7
    allmost60 said:

    Great post Eleanor!
    Hi Eleanor,
    I have to say your post is one of the most informative and supportive posts I've read. I'm sure Beth will really appreciate you sharing your SCT experience. Best wishes for continued success and no complications. Sue..(FNHL-2-3A-6/10)

    You are so right Sue
    I cannot tell you how grateful I was to see Eleanor's post. It helps so much to hear from someone who went through it and answer all the questions that doctors and websites don't.

    I was very weak for a while, but don't really remember needing that much help although I am sure my hubby may say differently.

    Thank you from the bottom of my heart :)

    Beth
  • yesyes2
    yesyes2 Member Posts: 591
    #8
    dixiegirl said:

    You are so right Sue
    I cannot tell you how grateful I was to see Eleanor's post. It helps so much to hear from someone who went through it and answer all the questions that doctors and websites don't.

    I was very weak for a while, but don't really remember needing that much help although I am sure my hubby may say differently.

    Thank you from the bottom of my heart :)

    Beth

    Awesome Post
    I whole heartedly agree, Eleanor's post was awesome. I hope you can get lots of valuable first hand information from her Beth. I'm sure your mind is going nonstop. There is so very much to learn and do for a sct. I'm sure the transplant team will have lots of information and sites for you. When do you meet with them? And Eleanor is a wonderful resource. Welcome Eleanor!!!

    I still highly recommend the leukemia & lymphoma board, lots of activity on the stem cell/bone marrow threads. Just stick with the Auto transplants, not the Allo transplants, totally different stories using donor cells not your own stem cells. And some are very scary, the allo ones.

    www.community.lls.org/community/bloodcancer

    Thinking of you and sending lots of positive wishes and prayers.
    Love you,
    Leslie
  • truckingalong
    truckingalong Member Posts: 445 Member
    #9
    yesyes2 said:

    Awesome Post
    I whole heartedly agree, Eleanor's post was awesome. I hope you can get lots of valuable first hand information from her Beth. I'm sure your mind is going nonstop. There is so very much to learn and do for a sct. I'm sure the transplant team will have lots of information and sites for you. When do you meet with them? And Eleanor is a wonderful resource. Welcome Eleanor!!!

    I still highly recommend the leukemia & lymphoma board, lots of activity on the stem cell/bone marrow threads. Just stick with the Auto transplants, not the Allo transplants, totally different stories using donor cells not your own stem cells. And some are very scary, the allo ones.

    www.community.lls.org/community/bloodcancer

    Thinking of you and sending lots of positive wishes and prayers.
    Love you,
    Leslie

    Same here - Welcome, Eleanor!
    I thank you for the information re: SCT. It is good for me to know about it in case it happens to me or anyone. Also not to be too scary about which this process is doable.

    This reminds me of the meaningful experience I had back in Sept. when I was in the infusion room and I was kinda new to this thing and this man who sat across from me also getting the the chemo reached out for me and calmed me. Next chemo treatment, same thing but this time he sat next to me and we had a good talk. He informed me he is a policeman - wow, he is too sweet to be in this role, I thought. Then he said that the chemo is not working well for him and he will need SCT and this would be his last chemo before going to another facility an hour away to have this procedure. He impressed me deeply because he appeared that he is not afraid and looks forward to go through the fight and win. He then patted my hand for good luck and gave me his email address (on a small piece of paper) and guess what, I lost it! Ever since, I could not find it. I could not reach him and that is frustrating. All I know is his name, Doug. So by reading your post, it is comforting to know that this process is promising and pray that Doug made it through well. I could not forget him so will keep on looking for him...

    With prayers,
    Liz

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