Thank you for your update, Debbie. You’re a real trooper! I really hope I can achieve even a fraction of your bright and positive outlook when it’s my turn to go through the process. Wishing you a very smooth and painless recovery from here on in.
Karen
Forums
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54
Re: Debbie's Stem Cell Transplant Journey
Thanks for posting your journey ... so helpful. Good luck to you as you continue your journey ... one day at a time. 
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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
It's so good to hear from you, Debbie. I can't say I'm completely surprised by the experiences you've described, but I'm happily surprised at how much stamina and "get up and go" you're showing. Keep it up!
(Yes, it's the Beacon. Just about nothing is sacred when it comes to describing the effects of multiple myeloma and the treatments for it!)
I really hope you are close to the bottom in terms of side effects and that you start to recover soon. What are you hearing from your doctors and the nurses?
(Yes, it's the Beacon. Just about nothing is sacred when it comes to describing the effects of multiple myeloma and the treatments for it!)
I really hope you are close to the bottom in terms of side effects and that you start to recover soon. What are you hearing from your doctors and the nurses?
Re: Debbie's Stem Cell Transplant Journey
Day +5
I am now neutropenic. White cells, neutrophils all low - below detectable level.
I am very tired – and still have nausea.
Just made it home from the hospital in time to get in to the bathroom – using the bucket and the toilet ...
Then took antinausea drugs and a nap for 3 hours.
Hoping that the nausea goes away soon.
Tonight I'm watching TV and sucking on an antinausea lozenge.
I am now neutropenic. White cells, neutrophils all low - below detectable level.
I am very tired – and still have nausea.
Just made it home from the hospital in time to get in to the bathroom – using the bucket and the toilet ...
Then took antinausea drugs and a nap for 3 hours.
Hoping that the nausea goes away soon.
Tonight I'm watching TV and sucking on an antinausea lozenge.
Re: Debbie's Stem Cell Transplant Journey
Hi Debbie, As well as taking the anti-nauseant medication, you could try drinking ginger ale and taking ginger lozenges or candies. That is a mild remedy to settle one's stomach down. Hope all goes well with you and that the blood counts soon start to recover also.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Debbie's Stem Cell Transplant Journey
Hang in there, Debbie. Hope you are feeling better from the side effects.
Rooting for you,
Margo
Rooting for you,
Margo
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3334 - Name: Margo
- Who do you know with myeloma?: myself, father
- When were you/they diagnosed?: Myself - Feb 2013, Father - Sept 2003
Re: Debbie's Stem Cell Transplant Journey
The BRAT diet helped me (Banana, Rice, Applesauce, Toast) as well as salty foods like crackers and chips and cups of noodles. I had a lot of GI involvement too. You are a doing good, half way there! You will start Neupogen shots and begin to feel better!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Debbie's Stem Cell Transplant Journey
Sounds like you are on your way, Debbie. Slow and thoughtful is the way to go. The journey you are undertaking is as exciting as it gets. You will find out about yourself like you never have before, as well as those around you.
My hope for you is that you will have the most eventful days behind you. I was fortunate to only remember one of uncontrolled food retention, so it is possible.
Rest is the most important thing to do and if you can get out and walk, it does wonders for you well being. Or better yet Zumba till you can't Zumba any more, then Zumba some more. Your body will tell you when it has had enough.
Day +447 and counting.
My hope for you is that you will have the most eventful days behind you. I was fortunate to only remember one of uncontrolled food retention, so it is possible.
Rest is the most important thing to do and if you can get out and walk, it does wonders for you well being. Or better yet Zumba till you can't Zumba any more, then Zumba some more. Your body will tell you when it has had enough.
Day +447 and counting.
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Jfosntampa
Re: Debbie's Stem Cell Transplant Journey
Hi Debbie,
Thank you for sharing your experience! Stem cell transplant is such an unknown path for those of us still in the contemplating place and trying to decide whether or not to proceed with it. Relaying what you are going through is very helpful and inspirational, even the tough parts.
As anyone who follows your posts can see, you are a force to be reckoned with! You will be back to Zumba soon enough, I suspect! In the meantime, try to be patient with your body while it recovers and heals. Feed it well, rest it often and think positive thoughts.
One day at a time, YOU GOT THIS!!
JennyD19
P.S.: Nausea advice (just what has worked for me in the past): mint tea (hopefully you are somewhere cold and not hot like it is here!)
Don't fight it. If you feel it, vomit and get it over with. The less you fight it, the less mental energy you will drain trying to convince yourself that you can tough it out and you will shorten the time you feel awful. Have a loved one keep the bathroom clean with extra rags and cleaning materials at the ready so you can shorten the whole experience from beginning to end.
Thank you for sharing your experience! Stem cell transplant is such an unknown path for those of us still in the contemplating place and trying to decide whether or not to proceed with it. Relaying what you are going through is very helpful and inspirational, even the tough parts.
As anyone who follows your posts can see, you are a force to be reckoned with! You will be back to Zumba soon enough, I suspect! In the meantime, try to be patient with your body while it recovers and heals. Feed it well, rest it often and think positive thoughts.
One day at a time, YOU GOT THIS!!
JennyD19
P.S.: Nausea advice (just what has worked for me in the past): mint tea (hopefully you are somewhere cold and not hot like it is here!)
Don't fight it. If you feel it, vomit and get it over with. The less you fight it, the less mental energy you will drain trying to convince yourself that you can tough it out and you will shorten the time you feel awful. Have a loved one keep the bathroom clean with extra rags and cleaning materials at the ready so you can shorten the whole experience from beginning to end.
-
JennyD19
Re: Debbie's Stem Cell Transplant Journey
Day +7
I want to thank everyone for the comments and words of encouragement. We all are really quite a team here on the Beacon, and it helps to know that you are all benefiting in some way from this experience, and I certainly have gotten some good ideas for helping with the nausea, and in general, to feel inspired. Yesterday, we were bucket-free!
Since I am now in the neutropenic phase, they have also started IV antibiotics and I no longer require the 4x a day penicillin pill. That was a tough pill to make time for in a nausea-filled day
There are a LOT of pills that I need to take!! Water is no longer tolerable, so I carry a can of ginger ale all around the house. Just remember to swish my teeth frequently, don't want to start with more teeth issues!!!
My husband has been just wonderful - taken over all of the meal planning and cooking. All of the cleaning, and, in general, has sequestered himself with me in this house to avoid germs. It is HUGE! To have that kind of support and love.
I have taken to eating the minimum and only what is palatable - Campbell's chicken noodle soup and chicken with rice, saltines, applesauce. My husband makes a dinner for us, and I try to eat a small serving of whatever that is - lately chicken chop suey and chicken over mashed potatoes (both were actually yummy). (I have an entire freezer filled with home made soups that I made in anticipation, but I really don't want those right now). I have a few Boost in the fridge and I had one of those yesterday. My doctor told me not to worry about it. He said in all the years of stem cell transplants, no one keeps the weight off. Everyone puts it back on. ... damn ....
So - fatigue is definitely a factor now, but I still am walking up and down the stairs, out to the car, in to the hospital, etc. I take a 3-hour nap every afternoon - but then I am up at 2:30 or 3 am. So my sleep patterns are all over the place.
I've been told the nausea should start to subside soon. That is my main thought. Everything else is no big deal. I take all of my anti-nausea pills (Ativan, Compazine, Zofran) religiously - whether I feel the need or not. And I bought Queasy Drops to have for the drive to and from hospital. Making sure to medicate with the Ativan before those drives. That particular drug seems to work the best for me, but it knocks me out too.
Slowing down a little for now and spending some time on this good ole' couch of mine and watching the season change out my big floor to ceiling windows! Drift in and out of sleep here and there. I can think of much worse things.
Day #7 feels good, so far, this morning (I am up at 2:30 am) sipping on a Coke and writing to you.
I want to thank everyone for the comments and words of encouragement. We all are really quite a team here on the Beacon, and it helps to know that you are all benefiting in some way from this experience, and I certainly have gotten some good ideas for helping with the nausea, and in general, to feel inspired. Yesterday, we were bucket-free!
Since I am now in the neutropenic phase, they have also started IV antibiotics and I no longer require the 4x a day penicillin pill. That was a tough pill to make time for in a nausea-filled day
There are a LOT of pills that I need to take!! Water is no longer tolerable, so I carry a can of ginger ale all around the house. Just remember to swish my teeth frequently, don't want to start with more teeth issues!!!My husband has been just wonderful - taken over all of the meal planning and cooking. All of the cleaning, and, in general, has sequestered himself with me in this house to avoid germs. It is HUGE! To have that kind of support and love.
I have taken to eating the minimum and only what is palatable - Campbell's chicken noodle soup and chicken with rice, saltines, applesauce. My husband makes a dinner for us, and I try to eat a small serving of whatever that is - lately chicken chop suey and chicken over mashed potatoes (both were actually yummy). (I have an entire freezer filled with home made soups that I made in anticipation, but I really don't want those right now). I have a few Boost in the fridge and I had one of those yesterday. My doctor told me not to worry about it. He said in all the years of stem cell transplants, no one keeps the weight off. Everyone puts it back on. ... damn ....
So - fatigue is definitely a factor now, but I still am walking up and down the stairs, out to the car, in to the hospital, etc. I take a 3-hour nap every afternoon - but then I am up at 2:30 or 3 am. So my sleep patterns are all over the place.
I've been told the nausea should start to subside soon. That is my main thought. Everything else is no big deal. I take all of my anti-nausea pills (Ativan, Compazine, Zofran) religiously - whether I feel the need or not. And I bought Queasy Drops to have for the drive to and from hospital. Making sure to medicate with the Ativan before those drives. That particular drug seems to work the best for me, but it knocks me out too.
Slowing down a little for now and spending some time on this good ole' couch of mine and watching the season change out my big floor to ceiling windows! Drift in and out of sleep here and there. I can think of much worse things.
Day #7 feels good, so far, this morning (I am up at 2:30 am) sipping on a Coke and writing to you.
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