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Have you had an outpatient stem cell transplant?
Has anyone had an outpatient stem cell transplant? What was your experience? Did you have a caregiver? Did you use a relative or hire?
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Rick++ - Name: Rick
- Who do you know with myeloma?: me
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 69
Re: Have you had an outpatient stem cell transplant?
In one Australian member of this forum did, I forget his name, and did forum thread about it.
It was possible to do it at home, as in parts of Australia, the nurse comes to you to inject the Mephalan etc. I believe.
It was possible to do it at home, as in parts of Australia, the nurse comes to you to inject the Mephalan etc. I believe.
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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: Have you had an outpatient stem cell transplant?
Lots of folks have done outpatient ASCT's on this forum. The advanced search function at the top of the forum page is your buddy. Just go to advanced search, type in "outpatient" and click on "message text only" and do the search.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Have you had an outpatient stem cell transplant?
Rick -- go to the first topic in this forum called "Useful Links ..." and scroll down to the stem cell transplant stories. The guy named "Matt Schtick" is Andy from Australia who did it as an outpatient living at home. "Mister Dana", well, that is me, and I did it by living in a hotel room near the Mayo Clinic in Rochester Minnesota. Mayo does hundreds of SCTs each year for various cancers and many of them are outpatient. There is even a transplant house where people live with minimal rent.
Some outpatients have to be hospitalized for a few days or more during their recovery, but I made through without ever being admitted to the hospital. The only negative to being an outpatient was that the hotel room cost was not covered by Medicare, though it was (up to a point) a tax deductible expense. The advantages are enormous if you can do it.
Dana
Some outpatients have to be hospitalized for a few days or more during their recovery, but I made through without ever being admitted to the hospital. The only negative to being an outpatient was that the hotel room cost was not covered by Medicare, though it was (up to a point) a tax deductible expense. The advantages are enormous if you can do it.
Dana
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Mister Dana - Name: Mister Dana
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 66
Re: Have you had an outpatient stem cell transplant?
I had an outpatient transplant on August 6th. I spent days -1and-2 in the hospital but was released to Family House, in Pittsburgh, after receiving my transplanted cells. I stayed at Family House near the hospital because I live about an hour and a half away and that was outside the allowed range. My sister and sister-in-law stayed with me as caregivers. I went back to the hospital every morning for lab work and to see the doctors. I was well enough to go home on day 15.
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KitKat225 - Name: KitKat225
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Nov 2014
- Age at diagnosis: 62
Re: Have you had an outpatient stem cell transplant?
Thanks all - as a newbie, I'm not to good at finding my way around the forums.
Looks like I am going in to UCLA's new outpatient facility in Jan 2016. The last time I asked [11-13-2015], they had their first myeloma patient on his second day at this facility, perhaps the first few are a test .
Looks like I am going in to UCLA's new outpatient facility in Jan 2016. The last time I asked [11-13-2015], they had their first myeloma patient on his second day at this facility, perhaps the first few are a test .
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Rick++ - Name: Rick
- Who do you know with myeloma?: me
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 69
Re: Have you had an outpatient stem cell transplant?
Hello Rick:
My wife had her inpatient ASCT Feb of this year at MSKCC in NY. We were slated for outpatient, but one bad # came back on one of the screenings (turned out to be a false alarm), and they changed it to inpatient. Here is some basic info that we were told at our Center (its still fresh in my mind). Outpatient was still relatively new, at this center we were told it was being done for a little less than three years (now 4). 50% of patients are actually started off as outpatients. At the first sign of anything going astray, they would bring you in to the hospital. About 50% of the group starting out as outpatients, do need to be admitted during the process at some point along the way. Although still new, the feeling was that there was no compromise of medical care going outpatient. You do need a 24x7 caregiver (or team), you cannot be left alone as an outpatient (getting a coffee for a half hour or so probably OK).
They idea behind it is that hospitals, ironically, are a major source of various, bacteria, viruses, etc. They have sick people in them, after all. Being out of the hospital for a period each day is actually better. If the outpatient local is a nice walk in the fresh air, so much the better. In this respect, cancer centers, like for example MSKCC and others, are set up to treat only immuno-suppressed patients. They do not treat broken bones, or bad flus. Thus, if you are in a general hospital, although they have procedures to protect against infection, it is probably a better thing to go outpatient, as compared to a cancer dedicated center, which probably has stronger protections against infections, hospital wide. Good luck with your procedure.
My wife had her inpatient ASCT Feb of this year at MSKCC in NY. We were slated for outpatient, but one bad # came back on one of the screenings (turned out to be a false alarm), and they changed it to inpatient. Here is some basic info that we were told at our Center (its still fresh in my mind). Outpatient was still relatively new, at this center we were told it was being done for a little less than three years (now 4). 50% of patients are actually started off as outpatients. At the first sign of anything going astray, they would bring you in to the hospital. About 50% of the group starting out as outpatients, do need to be admitted during the process at some point along the way. Although still new, the feeling was that there was no compromise of medical care going outpatient. You do need a 24x7 caregiver (or team), you cannot be left alone as an outpatient (getting a coffee for a half hour or so probably OK).
They idea behind it is that hospitals, ironically, are a major source of various, bacteria, viruses, etc. They have sick people in them, after all. Being out of the hospital for a period each day is actually better. If the outpatient local is a nice walk in the fresh air, so much the better. In this respect, cancer centers, like for example MSKCC and others, are set up to treat only immuno-suppressed patients. They do not treat broken bones, or bad flus. Thus, if you are in a general hospital, although they have procedures to protect against infection, it is probably a better thing to go outpatient, as compared to a cancer dedicated center, which probably has stronger protections against infections, hospital wide. Good luck with your procedure.
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JPC - Name: JPC
Re: Have you had an outpatient stem cell transplant?
I did my transplant outpatient. Since I live only 20 minutes from the transplant center I was able to stay at home. I went in every day for a blood draw and an examination. It was great to able to have the comforts of home while recovering.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Have you had an outpatient stem cell transplant?
My husband did his SCT outpatient at the Moffitt Cancer Center in Tampa, FL. They have a core competency of outpatient autos. He is 48 years old. i was the care giver.
Moffitt requires not only a full time caregiver but a back up caregiver should I get sick. We had to attend a class. I had no intention of my backup care giver becoming the care giver. I did have them attend the class to tick the box. Since the caregiver class was given every week, I figured if we needed a backup, they could take the class if they needed to plus I had a binder from my class.
Re: housing - Since we lived more than an hour away, we had to find housing in Tampa. There is probably some Hope Lodge that would be free as there is at Moffitt. The issues with this are a shared kitchen with other residents. May not be able to bring your food back to your room. Etc. Moffitt also had approved housing. We stayed at apartments. Moffitt also had some special programs to get people a much reduced rate. You should be assigned a social worker and that person can help you with housing.
Re: experience - we were in the clinic every day from 7:30am until anywhere from 10am - 12pm. It depended on if my husband's blood work showed he needed potassium or platelets or something. At time of engraftment, my husband did get a fever and had to spend 2 nights in the hospital - probably not necessary but they say most outpatient patients end up a day or 2 in the hospital.
For my husband, the procedure was pretty smooth and easier than he thought. The hardest part was leg pain which can cause from drug they give you to stimulate production of stem cells. He also had peripheral neuropathy from Velcade.
A hard part is being away from home for a month.
Moffitt requires not only a full time caregiver but a back up caregiver should I get sick. We had to attend a class. I had no intention of my backup care giver becoming the care giver. I did have them attend the class to tick the box. Since the caregiver class was given every week, I figured if we needed a backup, they could take the class if they needed to plus I had a binder from my class.
Re: housing - Since we lived more than an hour away, we had to find housing in Tampa. There is probably some Hope Lodge that would be free as there is at Moffitt. The issues with this are a shared kitchen with other residents. May not be able to bring your food back to your room. Etc. Moffitt also had approved housing. We stayed at apartments. Moffitt also had some special programs to get people a much reduced rate. You should be assigned a social worker and that person can help you with housing.
Re: experience - we were in the clinic every day from 7:30am until anywhere from 10am - 12pm. It depended on if my husband's blood work showed he needed potassium or platelets or something. At time of engraftment, my husband did get a fever and had to spend 2 nights in the hospital - probably not necessary but they say most outpatient patients end up a day or 2 in the hospital.
For my husband, the procedure was pretty smooth and easier than he thought. The hardest part was leg pain which can cause from drug they give you to stimulate production of stem cells. He also had peripheral neuropathy from Velcade.
A hard part is being away from home for a month.
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