In about two weeks I will undergo an autologous stem cell transplant at the Mayo Clinic in Rochester, Minnesota. This will be done on an "outpatient" basis. I am looking for your best suggestion or tip to share with me, drawing upon your experience as either a patient or caregiver.
During my transplant procedure, I will be staying at a hotel near the hospital. I am to report to the transplant center each day and return to the hotel each evening. I will have three caregivers who will rotate turns (my husband, my sister, and my best friend.) One of Mayo's requirements is that I need one caregiver with me at all times.
I'm looking for any suggestion you can offer -- whether it is about what type of facial mask is best to wear, to whether you were allowed to floss and brush your teeth, to what pain meds or anti-nausea meds the medical staff gave to you if you were nauseated or in pain, to what foods were you able to tolerate when you were the most ill.
I'm a bit nervous about the whole procedure -- especially trying to maintain a sterile environment going between the hospital and hotel each day.
Thank you, in advance, for any suggestions you can share. It is much appreciated.
Forums
-
CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: What's your best auto stem cell transplant tip?
The hospital provided my mom with the appropriate masks.
You can brush and floss your teeth until your platelets drop. Your doctor will tell you at what point they want you to take bleeding precautions.
The hospital is anything but sterile. Even the special units, like where my mom was. We were in and out of there and did not have to wear gloves or masks. Cafeteria people delivered trays, housekeeping was in and out, sharps containers replaced, etc., etc. But we didn't touch and washed our hands a lot. The staff always used Purell on the way in to the room and on the way out of the room.
You can brush and floss your teeth until your platelets drop. Your doctor will tell you at what point they want you to take bleeding precautions.
The hospital is anything but sterile. Even the special units, like where my mom was. We were in and out of there and did not have to wear gloves or masks. Cafeteria people delivered trays, housekeeping was in and out, sharps containers replaced, etc., etc. But we didn't touch and washed our hands a lot. The staff always used Purell on the way in to the room and on the way out of the room.
-
Leealli - Name: Allison
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 70
Re: What's your best auto stem cell transplant tip?
I had my transplant in Omaha at UNMC. When I got hooked up to the machine, it was a matter of what TV you want to watch or book to read. It was a simple procedure me. I had prior given myself shots for a couple of weeks of, I think, Neupogen to increase my stem cell production, thus making their release easier. They told me that it could take several days and it took only four hours for three complete amounts: one to use, two to store if needed. I stayed at a local motel and the next day I was in the hospital getting my transplant.
That was the easy part. All I can say is that, with my stay at the hospital, it is very, very, very important that you stay active. Get out of bed. They wanted me to walk the halls. I tried. I wish I had done more. I got weak from lack of exercise. Doing more exercise could have shortened my stay.
Remember, some of the worse things that make you sick are in the hospital. The cafeteria there is 24 hours and you can order anything at anytime, which made it nice to eat when I did feel better. I stuck to very soft foods because, at times with nausea and diarrhea, it made it easier for myself, Soft foods first, then moved on to better foods as I felt better.
When I was able to move to the motel part of the hospital and could go outside, I rebounded with the fresh air and the walks in the park and, yes, even careful shopping. About a week later I was sent home. Doing well 3 years later.
That was the easy part. All I can say is that, with my stay at the hospital, it is very, very, very important that you stay active. Get out of bed. They wanted me to walk the halls. I tried. I wish I had done more. I got weak from lack of exercise. Doing more exercise could have shortened my stay.
Remember, some of the worse things that make you sick are in the hospital. The cafeteria there is 24 hours and you can order anything at anytime, which made it nice to eat when I did feel better. I stuck to very soft foods because, at times with nausea and diarrhea, it made it easier for myself, Soft foods first, then moved on to better foods as I felt better.
When I was able to move to the motel part of the hospital and could go outside, I rebounded with the fresh air and the walks in the park and, yes, even careful shopping. About a week later I was sent home. Doing well 3 years later.
-
Big Bill
Re: What's your best auto stem cell transplant tip?
I had an auto stem cell transplant at Boston Medical Center in 2012 for AL (primary) amyloidosis.
A stem cell transplant is a marathon, not a sprint. Patience, which I found in very short supply, is exactly what is needed in droves.
The marathon is really only starting at the hospital - it continues after you've been discharged from the program and gone back home.
So I guess my best tip would be to prepare yourself mentally and emotionally for a long process. Settle in, pace yourself, make yourself as comfy as possible, and keep your eyes on the prize.
A stem cell transplant is a marathon, not a sprint. Patience, which I found in very short supply, is exactly what is needed in droves.
The marathon is really only starting at the hospital - it continues after you've been discharged from the program and gone back home.
So I guess my best tip would be to prepare yourself mentally and emotionally for a long process. Settle in, pace yourself, make yourself as comfy as possible, and keep your eyes on the prize.
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: What's your best auto stem cell transplant tip?
My transplant was at Mayo Rochester in March, 2011, and we rented a condo attached to the hospital by skyways and tunnels.
My first tip: You can walk comfortably for miles in those skyways and tunnels with a mask, no matter how slow you go.
Second tip: Have a supply of ice cream handy for milkshakes to keep your calorie count in the acceptable range. I never felt like eating, yet I had to show food intake and calorie counts to the nutritionist every day. Strawberry milkshakes saved me!
In the condo, my husband / caretaker was able to heat soup and make other easy-to-eat healthy foods, like scrambled eggs. (I grew to hate even the smell of Ensure.)
My first tip: You can walk comfortably for miles in those skyways and tunnels with a mask, no matter how slow you go.
Second tip: Have a supply of ice cream handy for milkshakes to keep your calorie count in the acceptable range. I never felt like eating, yet I had to show food intake and calorie counts to the nutritionist every day. Strawberry milkshakes saved me!
In the condo, my husband / caretaker was able to heat soup and make other easy-to-eat healthy foods, like scrambled eggs. (I grew to hate even the smell of Ensure.)
-
Barbarah - Name: Barbarah
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11-2008
- Age at diagnosis: 66
Re: What's your best auto stem cell transplant tip?
Hi CabinGirl,
It's natural to be nervous about an upcoming stem cell transplant!
But you'll make it through it just fine. You're in good hands at Mayo, for sure.
My main tip or advice is something Big Bill said: exercise, exercise, exercise. Get out of bed and get dressed in street clothes everyday. Walk as much as you can. Be active.
And I also second Tracy's point that a transplant is a marathon. The hospital stay is only about the first 5 miles or so. It takes between 6 months and 1 year to fully return to normal after it.
Best wishes. Keep us posted on how it goes.
Mike
It's natural to be nervous about an upcoming stem cell transplant!
But you'll make it through it just fine. You're in good hands at Mayo, for sure.
My main tip or advice is something Big Bill said: exercise, exercise, exercise. Get out of bed and get dressed in street clothes everyday. Walk as much as you can. Be active.
And I also second Tracy's point that a transplant is a marathon. The hospital stay is only about the first 5 miles or so. It takes between 6 months and 1 year to fully return to normal after it.
Best wishes. Keep us posted on how it goes.
Mike
-
mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: What's your best auto stem cell transplant tip?
Tracy nailed it - patience! I had my ASCT at The James at Ohio State. Patience is key in my view. Everyone deals with it differently.
As for nausea, try different things until you find what works. For me, it was a combo of Zofran (ondansetron) and Ativan (lorazepam).
Stay as positive as you can. I was back home in about 2 1/2 weeks.
As for nausea, try different things until you find what works. For me, it was a combo of Zofran (ondansetron) and Ativan (lorazepam).
Stay as positive as you can. I was back home in about 2 1/2 weeks.
-
Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: What's your best auto stem cell transplant tip?
I was also treated as an outpatient, but it was because I was well enough to go home and return daily to the outpatient unit for blood tests, IV hydration when needed, checkups on heart rate and blood pressure. There is quite a lot to going through a transplant. I was only in hospital for two nights at first, and then for another night later when I spiked a fever. Testing had to be done then to see how serious the fever was, which fortunately was not too serious. It was thought to be a reaction to Neupogen shots I was taking to boost my blood counts! It was all quite technical from a medical point of view!
But being away from the hospital was nice, in that I could get a good rest. I got up and started walking outdoors as soon as I could, with caregivers with me. Also, the trips back and forth to the hospital for my daily weekday checkups made me get up and move around. (We live only a 20 minute drive from the cancer centre). I was super tired, but that was good for me. I will be forever grateful to my family for caring for me through this time, when I really was quite sick.
Just take one day at a time, you will get through it! For me that was five years ago this month.
But being away from the hospital was nice, in that I could get a good rest. I got up and started walking outdoors as soon as I could, with caregivers with me. Also, the trips back and forth to the hospital for my daily weekday checkups made me get up and move around. (We live only a 20 minute drive from the cancer centre). I was super tired, but that was good for me. I will be forever grateful to my family for caring for me through this time, when I really was quite sick.
Just take one day at a time, you will get through it! For me that was five years ago this month.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: What's your best auto stem cell transplant tip?
I am currently debating whether or not to do an auto transplant versus continue with RVD and possibly go on maintenance. CabinGirl, what led you to decide to transplant? For others, thank you for your comments. How have you done since transplant? Are you on maintenance or just regular check-ups?
-
dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
Re: What's your best auto stem cell transplant tip?
Answer to Anton's question is: I decided to go ahead with the stem cell transplant because I have the "high-risk" chromosome mutation, del(17p). Both my oncologist and the specialist at Mayo were in agreement that going through with a transplant earlier, rather than delaying it, would give me the best chance against the 17p deletion mutation.
-
CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
25 posts
• Page 1 of 3 • 1, 2, 3
Return to Treatments & Side Effects