Chad:
Except for the driving, I think there's no question I would recommend outpatient. Keeping the house clean and preparing meals is a lot of work for your caregiver, but you will be a lot more comfortable at home. I think my ability to get out and be in comfortable and "normal" surroundings helped me tremendously. My most exhausting days are the few times I spent in the clinic bed getting hydration and platelets.
We were staying in an apartment minutes away from the clinic. We could take a shuttle, or I often walked. I can imagine a drive (even 30 minutes) could be a chore, but I on balance it will still be worth it to be home. We were at the apartment 28 days and I couldn't wait to get home. I can't even imagine having to stay in the hospital for an extended stay.
If things go well you'll feel good being up and about. If you hit a rough patch and need hospital care you'll get it. No reason to sit in the hospital if you don't need it.
Forums
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
My husband would have been so much more satisfied at home but we lived too far away, so we were in an extended stay hotel for almost a month. He would have so picked home. Mark is right, if you need to be in the hospital, they will put you there. My husband had to be readmitted from the motel for four days during engraftment due to a fever.
Mark, you look great! Good luck to you Chad.
Mark, you look great! Good luck to you Chad.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Thanks, Mark and Cathy. You've both made my decision a lot easier! On questions of comfort and lifestyle, I like taking advice from people who have gone through it over doctors whose motives I'm trained to question! I wish you both (Cathy's husband) a speedy and prolonged remission!
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Mark's stem cell transplant adventure (SCCA)
Day +56
All is well and progress continues.
I started maintenance therapy last week with my first dose of Kyprolis, Pomalyst, and dexamethasone. I'm currently receiving half the dose that I received prior to my stem cell transplant. I'm going in for Kyprolis 1 day per week (instead of two), 3 weeks in a row with one week off. Today was dose two of this first cycle. The current plan is to follow this regimen for at least a year.
So far so good. I'm handling the treatment as well (or better) than I did before the transplant. That is, I really don't notice any side effects. Dex makes it tough to get to sleep, but it doesn't keep me up all night. I'm feeling a bit tired, but I'm still getting my energy back from the transplant, I've been waking up at 3:00 and staying awake about 30 minutes (my pre-multiple myeloma normal) and my wife started back to work this week so our alarm goes off at 6. It's hard to pin down why I'm tired.
I have a bone marrow biopsy scheduled for October 21. That will probably be the first time we evaluate how well we did against this stinking disease. I'm planning to ease back into work the first week of October. I have the luxury to really play with my schedule and listen to my body. October 22 is my granddaughter's first birthday, and my clearance day to start eating real food again. I think I have a date with a big cold cut sandwich.
All is well and progress continues.
I started maintenance therapy last week with my first dose of Kyprolis, Pomalyst, and dexamethasone. I'm currently receiving half the dose that I received prior to my stem cell transplant. I'm going in for Kyprolis 1 day per week (instead of two), 3 weeks in a row with one week off. Today was dose two of this first cycle. The current plan is to follow this regimen for at least a year.
So far so good. I'm handling the treatment as well (or better) than I did before the transplant. That is, I really don't notice any side effects. Dex makes it tough to get to sleep, but it doesn't keep me up all night. I'm feeling a bit tired, but I'm still getting my energy back from the transplant, I've been waking up at 3:00 and staying awake about 30 minutes (my pre-multiple myeloma normal) and my wife started back to work this week so our alarm goes off at 6. It's hard to pin down why I'm tired.
I have a bone marrow biopsy scheduled for October 21. That will probably be the first time we evaluate how well we did against this stinking disease. I'm planning to ease back into work the first week of October. I have the luxury to really play with my schedule and listen to my body. October 22 is my granddaughter's first birthday, and my clearance day to start eating real food again. I think I have a date with a big cold cut sandwich.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Glad to hear you are coming along. I will hold good thoughts for you and the upcoming bone marrow biopsy.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Mark, hope all goes well.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Mark's stem cell transplant adventure (SCCA)
Day +74
Today I returned to work for the first time since mid-June. It is just lunchtime as I write this. While I've been very productive, I'm feeling very tired. I miss nap time. I have the luxury to ease back in. Everyone at work is very understanding and concerned for my well being. All in all, it feels like a huge accomplishment to be here.
In other news, yesterday The Beacon published the first of what I hope are many columns of mine. I enjoyed interacting with everyone here, and I've gotten so much from this community I decided I wanted to try and give back. The columns are in the "Opinion" section and if you haven't read them I highly recommend them.
Today I returned to work for the first time since mid-June. It is just lunchtime as I write this. While I've been very productive, I'm feeling very tired. I miss nap time. I have the luxury to ease back in. Everyone at work is very understanding and concerned for my well being. All in all, it feels like a huge accomplishment to be here.
In other news, yesterday The Beacon published the first of what I hope are many columns of mine. I enjoyed interacting with everyone here, and I've gotten so much from this community I decided I wanted to try and give back. The columns are in the "Opinion" section and if you haven't read them I highly recommend them.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Dear Mark,
I just wanted to tell you that I just took the time to read through your posts about the stem cell transplant and it has made me feel so much more comfortable about the one that I have coming up on October 11th. Thank you for all of the details and so glad that you are through and feeling better.
Would you say that besides tiredness you feel almost as good as you did pre-diagnosis?
I just wanted to tell you that I just took the time to read through your posts about the stem cell transplant and it has made me feel so much more comfortable about the one that I have coming up on October 11th. Thank you for all of the details and so glad that you are through and feeling better.
Would you say that besides tiredness you feel almost as good as you did pre-diagnosis?
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hollymree - Name: Holly
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 5/10/2016
- Age at diagnosis: 38
Re: Mark's stem cell transplant adventure (SCCA)
Holly: Thank you and good luck with your transplant. Everyone is different, but I was lucky and my experience proves it doesn't have to be scary and terrible.
I would say the two things I noticed and still notice most now, 74 days out, is fatigue and muscle strength. I don't know if I mentioned it in earlier posts (I guess I should review), but my legs in particular are weaker, especially the calves. They get sore and tired easily. I've been walking and exercising and they are improving. Now most of the "pain" I associated with use and building them back up so it is good. I also seem to have lost upper body strength. I noticed this the first time I tried to throw the ball for my dog. That too is slowly coming back,
I would say the two things I noticed and still notice most now, 74 days out, is fatigue and muscle strength. I don't know if I mentioned it in earlier posts (I guess I should review), but my legs in particular are weaker, especially the calves. They get sore and tired easily. I've been walking and exercising and they are improving. Now most of the "pain" I associated with use and building them back up so it is good. I also seem to have lost upper body strength. I noticed this the first time I tried to throw the ball for my dog. That too is slowly coming back,
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Mark's stem cell transplant adventure (SCCA)
Mark, it's so good to hear you're back to work. Going back to work is one of my hubby's main goals. I'm sitting here in the local motel, Day +22 for my hubby's transplant.
I have found so much encouragement following your transplant, along with AC's and Debby's husband. I can't wait to read your new articles.
P.S. - Great photo.
I have found so much encouragement following your transplant, along with AC's and Debby's husband. I can't wait to read your new articles.
P.S. - Great photo.
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
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