Debbie,
I am most likely having a stem cell transplant in early June. Your postings are giving me courage to do this thing. Thank you for sharing your journey with all of us and know that you have a lot of people cheering you on! Thank you!
Forums
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BLK - Name: Brenda
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: January 22, 2016
- Age at diagnosis: 55
Re: Debbie's Stem Cell Transplant Journey
Day 32!
Hi! Well +32 days! I am still working to taper off of the prednisone to help get rid of this rash. But, I'm starting to see some progress! Last time I had to bounce back up to 20 mg (I tried to taper from 10 mg to 0, that didn't work), then down to 10, but when I tried to go to 0 this second time, the rash returned on my cheeks. So, I stayed at 10 for another day. Now, yesterday, and today, I went down to 5 mg, and I don't think the rash is spreading (knock on wood for me right now!!)
So, I will hold her for a couple of days and then try 2.5 mg, then 2 days to 0. That is my plan. In doing some reading about engraftment syndrome, I was a bit nervous. So I'm glad to see a response to the prednisone and an ability to taper down to a lower dose!
I am feeling great! Yesterday I went for a walk (with a mask - I'm just not sure if I need one yet or not, but I will go the cautious route). I walked 4 miles and felt great! Now, today I did 1 hour of Zumba in the house (it's a bit windy outside, so I'll stay inside today). Last Sunday (Day 30) my husband and I went to visit my daughter. It was wonderful to see her in person and to get out of the house!
Hi! Well +32 days! I am still working to taper off of the prednisone to help get rid of this rash. But, I'm starting to see some progress! Last time I had to bounce back up to 20 mg (I tried to taper from 10 mg to 0, that didn't work), then down to 10, but when I tried to go to 0 this second time, the rash returned on my cheeks. So, I stayed at 10 for another day. Now, yesterday, and today, I went down to 5 mg, and I don't think the rash is spreading (knock on wood for me right now!!)
So, I will hold her for a couple of days and then try 2.5 mg, then 2 days to 0. That is my plan. In doing some reading about engraftment syndrome, I was a bit nervous. So I'm glad to see a response to the prednisone and an ability to taper down to a lower dose!
I am feeling great! Yesterday I went for a walk (with a mask - I'm just not sure if I need one yet or not, but I will go the cautious route). I walked 4 miles and felt great! Now, today I did 1 hour of Zumba in the house (it's a bit windy outside, so I'll stay inside today). Last Sunday (Day 30) my husband and I went to visit my daughter. It was wonderful to see her in person and to get out of the house!
Re: Debbie's Stem Cell Transplant Journey
Terrific update Debbie. Keep it up. I'm looking at mid-June for my transplant and reading your daily progress with great interest. Your spirit is very encouraging.
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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: Debbie's Stem Cell Transplant Journey
Love hearing the "I'm feeling great"!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Debbie's Stem Cell Transplant Journey
Day +46
Just got back in to the house from an 8 mile bike ride with a few small hills. I feel like my energy is getting back, almost to normal. I was still huffing and puffing up those few small inclines. So not quite there yet.
My appetite is good and my taste buds are returning to normal. Water tastes okay again - I was needing to put Gatorade packets into all of my glasses of water! So, now I can drink it plain!
I saw my doctor yesterday and he has given me the green light to go out in public. He said that my white cell count is good and that my immune system is in pretty good shape. So, not to worry and get back to living life! Sounds great to me! I am still erring on the side of caution - I didn't go to the Brewers game last night (even with a mask, I'm still not quite sure ...) But I WILL see my grandchildren this weekend if they are symptom-free of colds! And I went to my daughter's house last week for lunch!
SO - light at the end of the tunnel. And, I'm feeling great!
If your transplant is in your future, I hope that you have a similar experience and that there are no bumps in the road. So far, for me, it is all good!
P.S. - I've also posted a second update from today. It's down a few postings in this thread, and it includes photos of me and my horse.
Just got back in to the house from an 8 mile bike ride with a few small hills. I feel like my energy is getting back, almost to normal. I was still huffing and puffing up those few small inclines. So not quite there yet.
My appetite is good and my taste buds are returning to normal. Water tastes okay again - I was needing to put Gatorade packets into all of my glasses of water! So, now I can drink it plain!
I saw my doctor yesterday and he has given me the green light to go out in public. He said that my white cell count is good and that my immune system is in pretty good shape. So, not to worry and get back to living life! Sounds great to me! I am still erring on the side of caution - I didn't go to the Brewers game last night (even with a mask, I'm still not quite sure ...) But I WILL see my grandchildren this weekend if they are symptom-free of colds! And I went to my daughter's house last week for lunch!
SO - light at the end of the tunnel. And, I'm feeling great!
If your transplant is in your future, I hope that you have a similar experience and that there are no bumps in the road. So far, for me, it is all good!
P.S. - I've also posted a second update from today. It's down a few postings in this thread, and it includes photos of me and my horse.
Re: Debbie's Stem Cell Transplant Journey
Great news Debbie. Keep it up.
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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: Debbie's Stem Cell Transplant Journey
Such good news! 
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Debbie's Stem Cell Transplant Journey
Day +46 (Part 2)
Also got to see my beautiful horse, Mona today. Mask and gloves and carrots! I haven't been able to pet her and feed her in a few months, so it was SO nice to reconnect!
Also got to see my beautiful horse, Mona today. Mask and gloves and carrots! I haven't been able to pet her and feed her in a few months, so it was SO nice to reconnect!
- IMG_5404v2.jpg (75.98 KiB) Viewed 543 times
- IMG_5406v2.jpg (67.93 KiB) Viewed 543 times
Re: Debbie's Stem Cell Transplant Journey
Your posts have become my inspiration! I am just a few years older than you and heading for a stem cell transplant in June. Thanks so much for the encouragement and I hope all continues to go well for you.
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Marg274
Re: Debbie's Stem Cell Transplant Journey
Wow ... great!
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
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