Getting an auto stem cell transplant in few weeks and would really appreciate some feedback

Hi

Im mike (34 years old) and have been battling diffuse large b cell lymphoma for about 8 months. Did four rounds of R EPOCH and 5 rounds of Hyper C VAD. Great outcome, 98.5% of the cancer is gone. One lymphnode is still showing signs of cancer. After speaking to my doctors we have agreed to a Auto Stem Cell transplant. I have become very familiar with the actul process of the procdure and that doesnt seem to really bother me to much.

I am more interested in hearing about the recovery experiences and time frame afterwards from others who have experienced this type of procedure. Would welcome any and all feedback from others. Im very optimistic but would like to hear some personal stories and not statistics from doctors who sound like they are reading out of a book.

Thanks again

Comments

  • jimwins
    jimwins Member Posts: 2,107
    Hey Mike
    I also had Diffuse Large B Cell Lymphoma and received R-EPOCH (6 rounds).
    Thankfully, I'm in remission so far so I don't have experience with stem cell
    transplant. There are several on this board who do and I'm sure they will
    chime in here soon.

    Just read your post and wanted you to know we're listening :).
    Good luck to you!

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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  • coachmike
    coachmike Member Posts: 155
    jimwins said:

    Hey Mike
    I also had Diffuse Large B Cell Lymphoma and received R-EPOCH (6 rounds).
    Thankfully, I'm in remission so far so I don't have experience with stem cell
    transplant. There are several on this board who do and I'm sure they will
    chime in here soon.

    Just read your post and wanted you to know we're listening :).
    Good luck to you!

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
    Members are sharing recipes!:
    Recipe Sharing Project

    thank you Jim...i am
    thank you Jim...i am fortunate to have a great support group here at home. However its great to form new groups of suppport
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    transplant
    I had an autologous transplant last summer. Recovery is slow and energy is still not consistent. I had the hardest time at home for 2 months. It about drove me nuts not to be able to do gardening....wasn't allowed around dirt for 6 months.

    Just rest as much as you can. Watch out for germs and be very careful while your cell count is low.

    If you have questions, I'll be happy to help. Thanks

    Beth
  • allmost60
    allmost60 Member Posts: 3,178
    Best wishes
    Hi Mike,
    Just want you to know that you will be in my prayers for a successful transplant. Haven't had any experience with the procedure, so can't help there. Best wishes and good luck. Let us know how it goes for you. Sue (FNHL-2-3A-6/10)
  • diazr1
    diazr1 Member Posts: 101
    allmost60 said:

    Best wishes
    Hi Mike,
    Just want you to know that you will be in my prayers for a successful transplant. Haven't had any experience with the procedure, so can't help there. Best wishes and good luck. Let us know how it goes for you. Sue (FNHL-2-3A-6/10)

    Suggestions
    While in there they say your expected stay is 21-35 days. From my experience take in as many "Ensure" or "boost" meal replacements if you are unable to eat, if you are then have at it complete your meals.

    That is the only advice I can give so you can be home with your family faster
  • coachmike
    coachmike Member Posts: 155
    diazr1 said:

    Suggestions
    While in there they say your expected stay is 21-35 days. From my experience take in as many "Ensure" or "boost" meal replacements if you are unable to eat, if you are then have at it complete your meals.

    That is the only advice I can give so you can be home with your family faster

    Well I am bout two half
    Well I am bout two half weeks out before the auto transplant and im having the typical emotional rollercoasters. Some days im raging with optimism and others not so much. Come to know that this comes with a battle like this. I know that mental positivity is key to recovery and I try very hard to remember that. I have to beleive that this procedure will work and I can get back to enjoying the life I was brought here to live. Thank you everyone for your prayers and well wishes.
  • jimwins
    jimwins Member Posts: 2,107
    coachmike said:

    Well I am bout two half
    Well I am bout two half weeks out before the auto transplant and im having the typical emotional rollercoasters. Some days im raging with optimism and others not so much. Come to know that this comes with a battle like this. I know that mental positivity is key to recovery and I try very hard to remember that. I have to beleive that this procedure will work and I can get back to enjoying the life I was brought here to live. Thank you everyone for your prayers and well wishes.

    Rollercoasters
    Hey Mike,

    I know this is anxiety producing - to say the least.

    Know we're here for you and if possible, please keep in touch with
    us while you're at "Camp Stem Cell" :) or anytime for that matter.

    The rollercoaster sucks and you don't even get cotton candy ;).


    Ginormous hugs,

    Jim
  • coachmike
    coachmike Member Posts: 155
    jimwins said:

    Rollercoasters
    Hey Mike,

    I know this is anxiety producing - to say the least.

    Know we're here for you and if possible, please keep in touch with
    us while you're at "Camp Stem Cell" :) or anytime for that matter.

    The rollercoaster sucks and you don't even get cotton candy ;).


    Ginormous hugs,

    Jim

    Thanks Jim...its so nice to
    Thanks Jim...its so nice to have support out there. I have a huge support group here at home but thats something that you cant have enough of. Im in the hospital now doing a round of RICE and then in a week ill be doing my harvesting of stem cells. I go in for the transplant on May 28th.

    Im not too worried bout the transplant its that 100 days of life changing time frame that really seems to weigh heavily. I am such an active person and this something that I am adjusting too, but I know I can get through it...just may not be a happy camper at times lol.
  • trustinJesus
    trustinJesus Member Posts: 59
    coachmike said:

    Thanks Jim...its so nice to
    Thanks Jim...its so nice to have support out there. I have a huge support group here at home but thats something that you cant have enough of. Im in the hospital now doing a round of RICE and then in a week ill be doing my harvesting of stem cells. I go in for the transplant on May 28th.

    Im not too worried bout the transplant its that 100 days of life changing time frame that really seems to weigh heavily. I am such an active person and this something that I am adjusting too, but I know I can get through it...just may not be a happy camper at times lol.

    My dad just had a stem cell transplant
    My dad went in on April 11 (his Birthday) for his transplant and was in the hospital for 22 days. He gets tired easily. His numbers are still low. He has a realy bad rash right now. I'm nervous its the cancer causing the rash. My dad also has diffuse large b cell. He had r chop and rice before the transplant. Don't listen to the Doctors statistics. My dad's doctor was already talking about doing the next transplant on the day he went in with this one. Very frustrating. It will be a month before my dad has a scan to see if it worked. Ill be praying for you.