I did tandem transplants in 2012. Like you, I achieved stringent complete response (sCR), but was told a deeper response would be possible with the tandem. I was able to be completely off all myeloma treatment for 2 1/2 years before going back on Revlimid.
With my transplants, my body " reset" itself, so my chromosome problems were no longer there. When I relapsed, I did have a new chromosome problem. I will be back at the transplant center in two weeks for a checkup and to discuss if my treatment plan should be changed or continued.
I wish you well and peace with making the decision for another transplant. I can tell you my second and first were the same experience, same side effects.
Forums
Re: Hopeful1's tandem stem cell transplants
Thank you Maggie. I will take a few tests next week, and will be admitted on November 20 for my second auto transplant. Praying to be home for holiday. God bless.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Hopeful1's tandem stem cell transplants
Happy new year. It's been sometime since I have posted an update.
I am on Day +10 of my second (tandem) autologous stem cell transplant. So far so good, and a bit easier than the last transplant. Fewer loose stools, plenty of nausea. An odd rash pretty much all over, which is new; no rash the first time around.
I am ready to be released, hopefully this week, to begin clinic. I am 2 hours from home. I have been here since December 26. Hope the holidays and new year are off to a good start for all.
I am at stringent complete response and pray this second round will hold off the high-risk-for-relapse multiple myeloma. God bless.
P.S. - Just to clarify, the original date of November 20, 2017 for my second transplant was changed to December 26, 2017 due to an infection in my PICC line.
I am on Day +10 of my second (tandem) autologous stem cell transplant. So far so good, and a bit easier than the last transplant. Fewer loose stools, plenty of nausea. An odd rash pretty much all over, which is new; no rash the first time around.
I am ready to be released, hopefully this week, to begin clinic. I am 2 hours from home. I have been here since December 26. Hope the holidays and new year are off to a good start for all.
I am at stringent complete response and pray this second round will hold off the high-risk-for-relapse multiple myeloma. God bless.
P.S. - Just to clarify, the original date of November 20, 2017 for my second transplant was changed to December 26, 2017 due to an infection in my PICC line.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Hopeful1's tandem stem cell transplants
Hi Hopeful1,
As a recent member of this club, and with a transplant not in my near future, I carefully read each transplant message to get a sense of what I might experience.
I get your hopeful wish for complete success, mixed with an unspoken anxiety. Everything in our multiple myeloma world seems to involve wishing, hoping, and anxiety. And prayers for many of us.
Your sharing helps us all to feel connected to a large and supportive network of souls who know what we are going through, understand our fears and hopes, and give us emotional strength.
I look forward to your upcoming successes!
As a recent member of this club, and with a transplant not in my near future, I carefully read each transplant message to get a sense of what I might experience.
I get your hopeful wish for complete success, mixed with an unspoken anxiety. Everything in our multiple myeloma world seems to involve wishing, hoping, and anxiety. And prayers for many of us.
Your sharing helps us all to feel connected to a large and supportive network of souls who know what we are going through, understand our fears and hopes, and give us emotional strength.
I look forward to your upcoming successes!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Hopeful1's tandem stem cell transplants
Hopeful1, wishing you the very best with this second transplant. My husband is smoldering with a similar genetic profile to yours. Hope you are doing very well and on the upswing!
Re: Hopeful1's tandem stem cell transplants update
Hello!
Happy summer. I have not posted since January 8, at which time I seemed well enough to be released completing my second auto transplant. I was released on January 10 and readmitted on the 11th! I had lost 2.5 liters over the night. This body fluid loss continued through mid February. In addition, I have an elevated heart rate and low blood pressure. Admission was December 26, 2017, and I was released February 23, 2018.
In the beginning of this second transplant, all was smooth, but when the storm started, everyone was stumped on why we could not stop the diarrhea and vomiting. I lost nearly 30 pounds! Although I did do the exercise bike almost daily, I was very weak when released. Stairs were a big issue! Forget getting a bottle of water open without assistance.
I've been wondering how common heart damage and blood pressure issues are following transplant. This was my second autologous transplant. The first was August 2016 and this one, the second, December 2017. My body took a beating the second game around.
Good news is, I am in stringent remission, taking Revlimid daily straight through for 2 years, no monthly 7-day break and no dexamethasone (thank goodness). It concerns me slightly not having the 7-day recovery periods monthly with the Revlimid (that's how I was prescribed it after the first transplant). I'll give it time to see how I feel. I was drug free from my release to May 31. That was awesome!
My weight is back up, hair is coming in, and my strength has been regained! Fatigue continues to be my issue. I did experience itching all over for about a week with the Revlimid.
I am pleased with the outcome and I pray for a good long remission.
The best to you each. Stay strong.
Happy summer. I have not posted since January 8, at which time I seemed well enough to be released completing my second auto transplant. I was released on January 10 and readmitted on the 11th! I had lost 2.5 liters over the night. This body fluid loss continued through mid February. In addition, I have an elevated heart rate and low blood pressure. Admission was December 26, 2017, and I was released February 23, 2018.
In the beginning of this second transplant, all was smooth, but when the storm started, everyone was stumped on why we could not stop the diarrhea and vomiting. I lost nearly 30 pounds! Although I did do the exercise bike almost daily, I was very weak when released. Stairs were a big issue! Forget getting a bottle of water open without assistance.
I've been wondering how common heart damage and blood pressure issues are following transplant. This was my second autologous transplant. The first was August 2016 and this one, the second, December 2017. My body took a beating the second game around.
Good news is, I am in stringent remission, taking Revlimid daily straight through for 2 years, no monthly 7-day break and no dexamethasone (thank goodness). It concerns me slightly not having the 7-day recovery periods monthly with the Revlimid (that's how I was prescribed it after the first transplant). I'll give it time to see how I feel. I was drug free from my release to May 31. That was awesome!
My weight is back up, hair is coming in, and my strength has been regained! Fatigue continues to be my issue. I did experience itching all over for about a week with the Revlimid.
I am pleased with the outcome and I pray for a good long remission.
The best to you each. Stay strong.
-
Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Hopeful1's tandem stem cell transplants
That is awesome news! I was just diagnosed with what appears to be high risk and your story gives me a lot of hope! You’ve been through a lot and you have come out of it and that shows that you are very strong person! 
Re: Hopeful1's tandem stem cell transplants
Hi! Happy New Year.
I haven't posted in a while, time flies whether we are having fun or not! Today I return to the cancer center for results from my tandem anniversary biopsy. First autologous transplant was August 2017 and the second December 2017. I have been on 10 mg of Revlimid. Much has changed for me, hair is back, weight is holding, few stomach issues and mentally much stronger! Prayering I receive good news today.
I will circle back for those of you that follow our recoveries. Stay strong!
I haven't posted in a while, time flies whether we are having fun or not! Today I return to the cancer center for results from my tandem anniversary biopsy. First autologous transplant was August 2017 and the second December 2017. I have been on 10 mg of Revlimid. Much has changed for me, hair is back, weight is holding, few stomach issues and mentally much stronger! Prayering I receive good news today.
I will circle back for those of you that follow our recoveries. Stay strong!
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
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