Hi,
On behalf of my mother, I have a question about her upcoming high-dose therapy and autologous stem cell transplant.
To our concern, she will not be hospitalized during her planned transplant, but only have short visits to the hospital and spend most of the time at home. Is this common practice in other countries too? I thought this treatment was very tough and that her immune system will be very poor. As a consequence, I thought she should be in a protected environment until the treatment was finished.
In addition to the specific question above, we wish to get tips that could be helpful during autologous stem cell transplantation and high-dose therapy for treatment.
Note: she has responded well to pre-transplant therapy.
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Lacerta - Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Autumn 2015
- Age at diagnosis: 59
Re: Concern about mother's upcoming stem cell transplant
One member of this forum (Matt I think) who lives in Australia had his stem cell transplant done at home, with the nurse coming over to provide care. One teaching hospital here in southern Ontario (Canada) allows recipients to return home every day as long as they live within 75 km (45 miles) of the hospital (and have no other issues).
What country do you live in? Some countries are big at "recover/care at home." When my dad was released from hospital, the neurosurgeon issued orders that a nurse and then a physiotherapist come to my dad's house several days a weeks to care for him, all at the cost of the ministry of health.
What country do you live in? Some countries are big at "recover/care at home." When my dad was released from hospital, the neurosurgeon issued orders that a nurse and then a physiotherapist come to my dad's house several days a weeks to care for him, all at the cost of the ministry of health.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Concern about mother's upcoming stem cell transplant
Hi Lacerta,
My mother had two autologous stem cell transplants (2008 and 2015) at the Mayo Clinic in Rochester, Minnesota. Both were done as outpatient procedures. She was required to be close to Mayo, as she went in multiple times a day for testing and monitoring. The first time around she spent no time in the hospital, and the second time, she spent one night due to a suddenly rapid heart rate (which resolved itself). She was required to have a full time caregiver until they released her to home (in this case, my father).
Your mother's counts will hit bottom and will take a while to come up. In my mother's case, she was allowed to go home when her absolute neutrophil count had reached a certain number.
An important part of recovery is trying to stay as active as you can, and being outpatient, that's a little easier. Even if it's just walking from the car through the parking lot to the hospital twice a day, that's important. And when you're outpatient, you're forced to move around a little bit more.
Your hospital should give you lots of information about restrictions during the neutropenic phase. Your mother will most likely have to wear a mask for a while whenever she is outside her home or lodgings. There might be dietary restrictions too, like no fresh fruits or vegetables for a while. Everywhere is different though. One thing is that you will want to be ultra vigilant on infection control--lots and lots of handwashing, changing towels frequently, etc. We would keep disinfecting wipes around and try to wipe hard surfaces a couple of times a day. Don't forget about things like phones, remote controls and door knobs.
Good luck! The transplant will be behind you before you know it.
My mother had two autologous stem cell transplants (2008 and 2015) at the Mayo Clinic in Rochester, Minnesota. Both were done as outpatient procedures. She was required to be close to Mayo, as she went in multiple times a day for testing and monitoring. The first time around she spent no time in the hospital, and the second time, she spent one night due to a suddenly rapid heart rate (which resolved itself). She was required to have a full time caregiver until they released her to home (in this case, my father).
Your mother's counts will hit bottom and will take a while to come up. In my mother's case, she was allowed to go home when her absolute neutrophil count had reached a certain number.
An important part of recovery is trying to stay as active as you can, and being outpatient, that's a little easier. Even if it's just walking from the car through the parking lot to the hospital twice a day, that's important. And when you're outpatient, you're forced to move around a little bit more.
Your hospital should give you lots of information about restrictions during the neutropenic phase. Your mother will most likely have to wear a mask for a while whenever she is outside her home or lodgings. There might be dietary restrictions too, like no fresh fruits or vegetables for a while. Everywhere is different though. One thing is that you will want to be ultra vigilant on infection control--lots and lots of handwashing, changing towels frequently, etc. We would keep disinfecting wipes around and try to wipe hard surfaces a couple of times a day. Don't forget about things like phones, remote controls and door knobs.
Good luck! The transplant will be behind you before you know it.
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BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Concern about mother's upcoming stem cell transplant
Hi Lacerta,
I am currently in the hospital having my first stem cell transplant in Australia (currently day plus 5). There are lots of Beacon members who have completed their transplants on an outpatient basis and have had very few issues.
I think the main point is for you as the main caregiver to fully understand how demanding it will be, also how important hygiene is once your mother's white cells hit 0.
While I am currently going nuts having been in the same room for the past week, both my wife and I agree that the pressure on her would have been far greater had we done it at home.
I think it would be worth meeting with the doctor to discuss exactly what you would be required to do.
I hope this helps. Good luck!
I am currently in the hospital having my first stem cell transplant in Australia (currently day plus 5). There are lots of Beacon members who have completed their transplants on an outpatient basis and have had very few issues.
I think the main point is for you as the main caregiver to fully understand how demanding it will be, also how important hygiene is once your mother's white cells hit 0.
While I am currently going nuts having been in the same room for the past week, both my wife and I agree that the pressure on her would have been far greater had we done it at home.
I think it would be worth meeting with the doctor to discuss exactly what you would be required to do.
I hope this helps. Good luck!
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stu1975 - Name: Stu1975
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 38
Re: Concern about mother's upcoming stem cell transplant
Stu: Thanks for the update and good luck with your stem cell transplant.
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JPC - Name: JPC
Re: Concern about mother's upcoming stem cell transplant
Thanks for answers and tips. We will have this in mind when talking to the doctors being responsible for the upcoming stem cell transplant.
We live in Norway, but I do not know what is most common practice for stem cell transplant.
We live in Norway, but I do not know what is most common practice for stem cell transplant.
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Lacerta - Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Autumn 2015
- Age at diagnosis: 59
Re: Concern about mother's upcoming stem cell transplant
Hello Lacerta:
Regarding your comment on tips. The majority of patients lose in the range of 10 to 15 pounds (5 - 7 kilos) depending on a lot of factors because of GI issues. Keeping hydrated is a big issue.
If your mother is at or near her ideal weight, or a little bit over, she should eat very well going into the ASCT. I am talking about healthy foods, meats, fish, carbs, cooked and prepared very well, not junk food. If she is a little above weight, still eat well. Actually, "heavier" patients do quite well with ASCT, according to medical studies. So don't be afraid to have a few good meals before your mother has to go through this.
Good luck.
Regarding your comment on tips. The majority of patients lose in the range of 10 to 15 pounds (5 - 7 kilos) depending on a lot of factors because of GI issues. Keeping hydrated is a big issue.
If your mother is at or near her ideal weight, or a little bit over, she should eat very well going into the ASCT. I am talking about healthy foods, meats, fish, carbs, cooked and prepared very well, not junk food. If she is a little above weight, still eat well. Actually, "heavier" patients do quite well with ASCT, according to medical studies. So don't be afraid to have a few good meals before your mother has to go through this.
Good luck.
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JPC - Name: JPC
Re: Concern about mother's upcoming stem cell transplant
Thanks, JPC.
I will forward this to her and encourage her to eat well.
I will forward this to her and encourage her to eat well.
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Lacerta - Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Autumn 2015
- Age at diagnosis: 59
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