Harvest began Monday, with first transplant set for August 15, followed by restaging and then a second transplant.
Complete remission at this time. Did the Velcade, Revlimid, and dexamethasone regimen. Great response, few side effects (although dex is awful).
High risk for relapse, stage 3, kappa light chain IgG myeloma. Del p53 and 13 17.
Will be 2 hours away from home for almost 4 months. I will be an inpatient for each transplant, 2-3 weeks. After that, must remain in the area for 3-4 weeks to be 7-10 miles from the hospital. Will be on Revlimid 10 mg, no dex (thank goodness), after transplants.
Details to follow. Thank you all for sharing your experiences. I will try to post my progress
Blessing and good health to all.
Forums
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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
I, too, have 17p deletion, so I will be very interested in following how you do,with your tandem transplant. It sounds like a long journey.
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Janet1520
Re: Hopeful1's tandem stem cell transplants
Good luck to you on your upcoming tandem autologous stem cell transplants (ASCTs). I hope you come through it all strong and really give the multiple myeloma a knockout punch. Look forward to hearing of your progress.
I am at Day +55 after my single ASCT and I have to say I feel really good and have been actively riding my bicycle for the past month.
Just take it a day at a time, drink lots of fluids, go for walks when you can, and above all stay positive.
I am at Day +55 after my single ASCT and I have to say I feel really good and have been actively riding my bicycle for the past month.
Just take it a day at a time, drink lots of fluids, go for walks when you can, and above all stay positive.
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Colin - Name: Colin Rice
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2016
- Age at diagnosis: 60
Re: Hopeful1's tandem stem cell transplants
Colin,
Glad to hear you are riding again. Seems that your transplant went pretty smoothly. Hope there are no bumps in the road to recovery.
Glad to hear you are riding again. Seems that your transplant went pretty smoothly. Hope there are no bumps in the road to recovery.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Hopeful1's tandem stem cell transplants
Hopeful,
Good luck to you. We will all be following you with interest. You have a great attitude!
Good luck to you. We will all be following you with interest. You have a great attitude!
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Hopeful1's tandem stem cell transplants
Hello Hopeful.
I hope your stem cell harvesting earlier this week went well, and I wish you nothing but the best for the upcoming transplant. Good luck!
I hope your stem cell harvesting earlier this week went well, and I wish you nothing but the best for the upcoming transplant. Good luck!
Re: Hopeful1's tandem stem cell transplants
Hello!
Thanks to each of you for your kind words and support.
My harvest is complete. 7+ million collected. My doctors wanted 10 million, but my platelets dropped very low and they decided against giving me any platelets. I arrived last Friday morning, had blood work and the port placed. This Tuesday began the first of 2 (7:30 am) shots (fertilizer, my doctor calls these). Followed by an additional shot at 4:30. This contains a medication to push the cells out of the marrow
There was little discomfort in getting the port, but I was quite sore for several days. Enough pain to interrupt sleep.
I also find the port a bit of a challenge and worry about keeping the area dry while bathing.
After the morning shots, I was sent straight to harvest, Tuesday thru Thursday, 8 a.m until 2 p.m. You connect to the machine and there it goes. I found it hard to be still that long! I did feel quite tired for about an hour after the harvest visits. A new week of not so fun experience of medical terms, Nurses and long days. It's a bit of a whirlwind. Eat a good breakfast and bring your lunch and entertainment. I'm not much of a TV person but did binge on "That 70s Show."
Late afternoon on Friday I was released. Hit the road like OJ to get home! Adjusting to being a couple hours from home and the 7 outpatient days were exhausting. Hospital life is much different than home life
Happy to say I'm back home, enjoying early morning beach time decompressing. I walked each evening in the big cement city. downtown where the hospital is. It offers nice historical statues and buildings, amazing architecture. I walked each evening. But there's no place like home.
I will be returning and be admitted Monday, high-dose chemo on Tuesday, rest Wednesday, and reinfusion of stem cells (autologous transplant) Thursday, August 17.
I feel anxious but positive and ready to get on with it. I'll give all my absolute best! Not looking forward to being away from home, hoping the time will go fast. I'm a very outdoors person, gardener, beach walker, boater, and lover of outdoor cafes. To get back to home and homelife as soon as possible, I will follow the advice, do everything the doctor says: exercise, eat whatever you, can but eat! That's the plan.
Packing for the long haul: novels, iPad, puzzle mags, and now clothes. Ugh. It's a busy time.
I'll circle back. Only good juju.
Thanks to each of you for your kind words and support.
My harvest is complete. 7+ million collected. My doctors wanted 10 million, but my platelets dropped very low and they decided against giving me any platelets. I arrived last Friday morning, had blood work and the port placed. This Tuesday began the first of 2 (7:30 am) shots (fertilizer, my doctor calls these). Followed by an additional shot at 4:30. This contains a medication to push the cells out of the marrow
There was little discomfort in getting the port, but I was quite sore for several days. Enough pain to interrupt sleep.
I also find the port a bit of a challenge and worry about keeping the area dry while bathing. After the morning shots, I was sent straight to harvest, Tuesday thru Thursday, 8 a.m until 2 p.m. You connect to the machine and there it goes. I found it hard to be still that long! I did feel quite tired for about an hour after the harvest visits. A new week of not so fun experience of medical terms, Nurses and long days. It's a bit of a whirlwind. Eat a good breakfast and bring your lunch and entertainment. I'm not much of a TV person but did binge on "That 70s Show."
Late afternoon on Friday I was released. Hit the road like OJ to get home! Adjusting to being a couple hours from home and the 7 outpatient days were exhausting. Hospital life is much different than home life
Happy to say I'm back home, enjoying early morning beach time decompressing. I walked each evening in the big cement city. downtown where the hospital is. It offers nice historical statues and buildings, amazing architecture. I walked each evening. But there's no place like home.
I will be returning and be admitted Monday, high-dose chemo on Tuesday, rest Wednesday, and reinfusion of stem cells (autologous transplant) Thursday, August 17.
I feel anxious but positive and ready to get on with it. I'll give all my absolute best! Not looking forward to being away from home, hoping the time will go fast. I'm a very outdoors person, gardener, beach walker, boater, and lover of outdoor cafes. To get back to home and homelife as soon as possible, I will follow the advice, do everything the doctor says: exercise, eat whatever you, can but eat! That's the plan.
Packing for the long haul: novels, iPad, puzzle mags, and now clothes. Ugh. It's a busy time.
I'll circle back. Only good juju.
-
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 Hopeful,
I'm so glad to hear that your stem cell collection is over and that you harvested enough cells for both transplants. It must be great to be able to spend some time at home before heading back for the transplant.
If you need some tips for what to pack, you may want to check out this forum thread from last year:
https://myelomabeacon.org/forum/stem-cell-transplant-away-from-home-what-to-bring-t7047.html
During the transplant process itself, you of course will want to follow the advice of the nurses and doctors. I would particularly emphasize, however, doing the recommended amount of walking and other exercise each day, if you at all can.
It is my understand that walking during transplant recovery is important not only because it is exercise, but also because it speeds up stem cell engraftment, which cuts down on the time you'll be seriously immunocompromised.
(I tried to find a published study that supports the engraftment-related effect of walking, but I came up short. Perhaps someone else will have better luck.)
Good luck! We will be thinking of you and wishing you the best.
I'm so glad to hear that your stem cell collection is over and that you harvested enough cells for both transplants. It must be great to be able to spend some time at home before heading back for the transplant.
If you need some tips for what to pack, you may want to check out this forum thread from last year:
https://myelomabeacon.org/forum/stem-cell-transplant-away-from-home-what-to-bring-t7047.html
During the transplant process itself, you of course will want to follow the advice of the nurses and doctors. I would particularly emphasize, however, doing the recommended amount of walking and other exercise each day, if you at all can.
It is my understand that walking during transplant recovery is important not only because it is exercise, but also because it speeds up stem cell engraftment, which cuts down on the time you'll be seriously immunocompromised.
(I tried to find a published study that supports the engraftment-related effect of walking, but I came up short. Perhaps someone else will have better luck.)
Good luck! We will be thinking of you and wishing you the best.
Re: Hopeful1's tandem stem cell transplants
Hello!
The journey has begun. August 17, 2017. Very uneventful. So far I am feeling pretty good. Definite lack of energy and appetite. Food and beverages have foul taste I cannot handle. Smells make me dry heave. Being indoors for 7 days has been tough for me. Today is the first day of the second week. I'm praying I will be released early next. The walls close in on me here.
My heart beat has been over 100+ since the chemo. EkG late last night normal. I am told and have read here that the worst is yet to come in the recovery process: loose BMs, hair falling out, body pain due to the engraftment?
Slowing down to look out at the wonder of the eclipse. Have a great day.
Thankful for my caregivers, my family and friends for the support, along with the responders here at the Beacon. All we need is love, boop bada baboop.
The journey has begun. August 17, 2017. Very uneventful. So far I am feeling pretty good. Definite lack of energy and appetite. Food and beverages have foul taste I cannot handle. Smells make me dry heave. Being indoors for 7 days has been tough for me. Today is the first day of the second week. I'm praying I will be released early next. The walls close in on me here.
My heart beat has been over 100+ since the chemo. EkG late last night normal. I am told and have read here that the worst is yet to come in the recovery process: loose BMs, hair falling out, body pain due to the engraftment?
Slowing down to look out at the wonder of the eclipse. Have a great day.
Thankful for my caregivers, my family and friends for the support, along with the responders here at the Beacon. All we need is love, boop bada baboop.
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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 Tuesday,
The loose BMs from the high-dose chemo have arrived, without much notice. Smell, taste and appetite are struggling. Still low energy! Hair still intact.
Hope all is well with all of you. I will circle back.
The loose BMs from the high-dose chemo have arrived, without much notice. Smell, taste and appetite are struggling. Still low energy! Hair still intact.
Hope all is well with all of you. I will circle back.
-
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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