Hang in there, Hopeful1. The next few days are likely to get a bit tougher, but within a week or so things should improve dramatically. Stay careful to avoid infections. You have got this.
As for the months ahead, it is over 2 months since my autologous stem cell transplant, and I am out riding my bicycle and even running.
Forums
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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
Hello.
Thank you Colin for the support. It's amazing how we lift each other up through experiences. Exactly one week since the chemo, my journey as far as side effects, is on full swing.
GREAT to hear you are riding and cycling. I must bump myself and get these walks in! Not fond of he hallways, darn I need the outdoor air.
I am frustrated by my change in taste and loss of appetite, and I hope it won't last long. I am nearly forcing myself to eat anything that will stay down. The thick saliva challenges me.
With all that said, I'm doing this and getting rid if this monster.
Thank you Colin for the support. It's amazing how we lift each other up through experiences. Exactly one week since the chemo, my journey as far as side effects, is on full swing.
GREAT to hear you are riding and cycling. I must bump myself and get these walks in! Not fond of he hallways, darn I need the outdoor air.
I am frustrated by my change in taste and loss of appetite, and I hope it won't last long. I am nearly forcing myself to eat anything that will stay down. The thick saliva challenges me.
With all that said, I'm doing this and getting rid if this monster.
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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
Dear Hopeful1,
Your transplant will have many highs and lows. You are probably in the low spot right now, as about a week to two after transplant things don't always go too well. I too have gone through an autologous transplant and I also have the 17p deletion, which makes me high risk. Hang in there, we know it's tough, but it sounds like you can overcome the challenge.
At the transplant center where you are, will the nurses allow you to venture outside if you wear a mask over your nose and mouth to ward off any germs?
Please keep us all posted. We are all cheering for you.
Your transplant will have many highs and lows. You are probably in the low spot right now, as about a week to two after transplant things don't always go too well. I too have gone through an autologous transplant and I also have the 17p deletion, which makes me high risk. Hang in there, we know it's tough, but it sounds like you can overcome the challenge.
At the transplant center where you are, will the nurses allow you to venture outside if you wear a mask over your nose and mouth to ward off any germs?
Please keep us all posted. We are all cheering for you.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Hopeful1's tandem stem cell transplants
Hopeful1,
You're basically one month ahead of me in this process, so I was reading your posts with interest (start my transplant next Tuesday). Hang in there and I'll be keeping a lookout for updates.
Thanks and good luck,
Rick
You're basically one month ahead of me in this process, so I was reading your posts with interest (start my transplant next Tuesday). Hang in there and I'll be keeping a lookout for updates.
Thanks and good luck,
Rick
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Rick From Virginia
Re: Hopeful1's tandem stem cell transplants
Hello.
Thank you all for the great info and support. Challenges continue to be taste and GI issue. I cannot seem to find a beverage that tastes like anything but metal. I also have mild case of thrush in my mouth (I did consume popsicles through my chemo infusion). Have had a bit of insomnia these couple nights.
Platelets given yesterday have given me some bone pain. All still very manageable.
White cells have dropped. Waiting now for engraftment.
Cereal has been my food of choice. I think the small amount of milk hides the metal taste.
I am going to ask today if there's any chance I could take a field trip outside.
Rick, good luck to you. I am in Virginia too (Virginia Commonwealth University).
.
Cabin Girl, thank you for your advice and support.
Thank you all for the great info and support. Challenges continue to be taste and GI issue. I cannot seem to find a beverage that tastes like anything but metal. I also have mild case of thrush in my mouth (I did consume popsicles through my chemo infusion). Have had a bit of insomnia these couple nights.
Platelets given yesterday have given me some bone pain. All still very manageable.
White cells have dropped. Waiting now for engraftment.
Cereal has been my food of choice. I think the small amount of milk hides the metal taste.
I am going to ask today if there's any chance I could take a field trip outside.
Rick, good luck to you. I am in Virginia too (Virginia Commonwealth University).
.
Cabin Girl, thank you for your advice and support.
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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,
I did my transplants at VCU in 2012. My taste got off and I got hooked on grape Kool Aid. Yes, of all things, that's what had taste for me. Guess it was strong flavor to cut the metal taste. Also, the tomato-based soup. I lost 34 pounds. I had a lot of stomach issues, so try to find something. They used to order down to Chick-fil-a for a meal while I was there. At least it was something different.
I hope your journey continues well. I still make a yearly visit to VCU and the rest of my care is in Lynchburg,Virginia.
I did my transplants at VCU in 2012. My taste got off and I got hooked on grape Kool Aid. Yes, of all things, that's what had taste for me. Guess it was strong flavor to cut the metal taste. Also, the tomato-based soup. I lost 34 pounds. I had a lot of stomach issues, so try to find something. They used to order down to Chick-fil-a for a meal while I was there. At least it was something different.
I hope your journey continues well. I still make a yearly visit to VCU and the rest of my care is in Lynchburg,Virginia.
-
Margie C
Re: Hopeful1's tandem stem cell transplants
Hello.
Thank you Margie for your advice and experience.
Still searching for a good beverage. Here at VCU, I received a big NO to an outside visit, and the same with Chick-fil-a.
More platlets to be given today, along with potassium, calcium, and magnesium. BMs are proving to be a big challenge, I am fatigued even with good rest.
White cells have barely moved. Hopefully today we will see an improvement.
The hair is starting to go. I'll address that today
.
Have a great weekend. Blessing and good health to all.
Thank you Margie for your advice and experience.
Still searching for a good beverage. Here at VCU, I received a big NO to an outside visit, and the same with Chick-fil-a.
More platlets to be given today, along with potassium, calcium, and magnesium. BMs are proving to be a big challenge, I am fatigued even with good rest.
White cells have barely moved. Hopefully today we will see an improvement.
The hair is starting to go. I'll address that today
. Have a great weekend. Blessing and good health to all.
-
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
Hello Hopeful,
I see that it's been a week now since your last update. I hope you are doing okay. Best wishes for a quick recovery.
I see that it's been a week now since your last update. I hope you are doing okay. Best wishes for a quick recovery.
Re: Hopeful1's tandem stem cell transplants
Hello. It's September 4. Happy Labor Day.
I am still in the hospital.
Day by day I wait on my release. My doctors are waiting for GI issues to cease. I have a good day (no dry heaves, few loose BMs) to a not so good day, several loose stools. I have been checked for C. diff and any other bacteria. All clear (negative). BMs did show white cells in stool. Doctors want to rule out graft vs. host disease (GVHD). Absorbing foods and medications is an issue (whole pills in each BM). (Just as a reminder: I had an autologous, not an allogeneic, transplant; GVHD is most common with allo transplants.). Today doctors ordered a colonoscopy, will get a few biopsies to rule out any other issues.
Low energy and bit depressed, but continuing the fight. Multiple myeloma will not win.
Going on 20 days inside a hospital; for an outdoors person, this has been very difficult.
Great staff, family, and dear friends continue to fuel me. A long boat ride on the Chesapeake Bay end of this month is what I reach for.
Prayer, good health, and the jewel of a grand support team keep the wind in my sail.
P..S. - Hair extremely thin, but I have not gone bald. I chose not to shave but to cut super short. A good decision for. me.
God bless. COOKOUT, enjoy the day.
Xo
I am still in the hospital.
Day by day I wait on my release. My doctors are waiting for GI issues to cease. I have a good day (no dry heaves, few loose BMs) to a not so good day, several loose stools. I have been checked for C. diff and any other bacteria. All clear (negative). BMs did show white cells in stool. Doctors want to rule out graft vs. host disease (GVHD). Absorbing foods and medications is an issue (whole pills in each BM). (Just as a reminder: I had an autologous, not an allogeneic, transplant; GVHD is most common with allo transplants.). Today doctors ordered a colonoscopy, will get a few biopsies to rule out any other issues.
Low energy and bit depressed, but continuing the fight. Multiple myeloma will not win.
Going on 20 days inside a hospital; for an outdoors person, this has been very difficult.
Great staff, family, and dear friends continue to fuel me. A long boat ride on the Chesapeake Bay end of this month is what I reach for.
Prayer, good health, and the jewel of a grand support team keep the wind in my sail.
P..S. - Hair extremely thin, but I have not gone bald. I chose not to shave but to cut super short. A good decision for. me.
God bless. COOKOUT, enjoy the day.
Xo
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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 Labour Day to you as well, Hopeful1. Good to hear from you. I am hoping you will be out of the hospital soon.
Will take your advice and cook out. Actually one of the first things I did when I returned home was to buy a new BBQ.
Good luck and hope you get better soon.
Will take your advice and cook out. Actually one of the first things I did when I returned home was to buy a new BBQ.
Good luck and hope you get better soon.
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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
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