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Re: Stem cell transplant - your experiences?
Thanks for all of the great testimonies. I have been sharing them with my husband to build his confidence in the SCT process. We had two consultations in the last week (different transplant groups). Your stories help.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Stem cell transplant - what to expect?
Thanks everyone. I had to go back and re-read these posts as we are at the point of SCT. He will get port installed 12/13 and start from there. My biggest worry is that he is going to start high does chemo on Christmas Eve. I just don't want him to be too sick. They claim that he will be more sick a few days later post Christmas when numbers fall. We will see...
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Stem cell transplant - what to expect?
Hi LadyLib,
Hope everything is still going well for you guys. I'm adding my experience here to keep it with a same themed thread.
Prior to my transplant, I had to provide a dental clearance to the transplant team. I did this with enough time, I thought, but then it turned out that the dentists just sat on the report and never sent it in. It was my normal dentist's partner (her husband) and I guess he wasn't that organized. Luckily I called and was able to get it going, but not without stress. He told me that he wouldn't recommend that my wisdom teeth be extracted, but then wrote the opposite in the report ! Jeez !
The transplant center rejected the idea of extractions. The wisdom teeth were fine and I was on Zometa. But, I did have a tooth that was slightly suspicious. I had to get in with an oral surgeon within 24 hours because I was scheduled to have my harvest chemo the same week and that would take out my immune system. I also decided to have my head shaved prior to being admitted, so I had an appointment for a root canal and a head shave the same day. Woo-hoo! So much fun.
But, with that behind me, I had the Cytoxan and with lots of nausea meds, had very little trouble other than needing to rest for a couple of days. I began the Neupogen shots. I gave them to myself and they didn't hurt much, but it really gave me the heeby-jeebies. I believe it was two a day for ten days, unless my memory fails me. I can't remember when I got my Hickman line put in. I guess it was about four days before my harvest. It wasn't too bad, but I hated having to flush it with the solution. I'm glad it came out before I was released from the hospital.
My myeloma specialist is at Dana Farber in Boston and they are attached, both figuratively and literally (through a walkway) to Brigham and Women's Hospital. So, B and W is where I had it done. They do inpatient and are really good at what they do. It was a private room within a grouping of six (I believe) other private rooms where other patients are getting transplants. The ventilation is separate so that you are not getting recycled air from infected patients. I was very glad to have this done as an inpatient . I didn't have to think about anything other than getting to the bathroom and back to bed.
I was there for 16 days and, strangely, it didn't seem like that long. I don't know if my mind just went into some kind of time warp or what. I started the melphalan the day after I checked in and had it the following day also. The nurses gave me enough Italian ices, popsicles and ice to keep my mouth semi-frozen during the infusion. I never got mouth sores but I never want to see an Italian ice again for as long as I live. When I got home, I threw out all of the ones we had in our freezer.
I got my own stem cells back the next day. They had asked me if I wanted a chaplain there to bless them. At first I thought no (I'm not a churchgoer) but then decided 'what the heck" . My husband was there with me, the nurse and the chaplain. They had a pre-written blessing for the cells that was nice. We all laid our hands on the bag of my cells before they hooked it up. It was comforting.
The only problems I had were diarrhea and some nausea. They tested me twice for C-diff due the diarrhea. Negative both times, thank goodness. I only vomited twice and felt just a bit queasy. I give credit to the nurses for supplying the anti-nausea meds very skillfully and before I needed them That is key. Take them regularly and if you feel bad, ask for more before you really feel bad.
I was there during much of the time by myself because we live so far away, have a lot of dogs that need care, and my husband does not have sick or vacation days. He came up as much as he could and was very supportive, but I was fine when I was on my own. There is someone in your room so often that, even without a visitor, you really are not alone.
I had brought tons of DVDs, books, and my computer. I watched DVDs during the melphalan, but not much after those days. I don't think I read at all and I used my computer a little bit. I mostly just slept and watched the baseball playoffs. (The nurses were happy I had that on because the Red Sox had a shot !) It was like I was in my own time zone or something.
I also had my phone and talked and texted a lot with my husband, family and friends. Most of my friends and family are in California.
My recovery was pretty smooth. I was driving myself to my local doctor appointments the first week back (about five miles each way). I couldn't drive longer distances for about a month. I had a strange rash for about two months. It was pretty itchy for two or three weeks, but then began to subside. They gave me antihistamines and took me off everything else except valcyclovir [during that time. I felt kind of crummy for about a week to ten days and then just more tired than normal.
My husband had to be at work but we had a friend come once a day to check on me and take care of the dogs. I could pet the dogs and then wash my hands but couldn't do care for them for awhile.
Every night when my husband got home, he'd cook for me and run to the store for whatever sounded good to me which, for a while, was soup, crackers and pudding with an occasional frozen dinner. He set up a downstairs bedroom for me, but I found that I could go upstairs without a problem. It was great for naps though.
So now I'm 5 and a half months post transplant. My numbers are good, I feel good. I'm back on RVD but will probably be changing soon because I have new plasmacytomas on my skull. Who knows how that will play out.
After months of worrying about the transplant, it feels good to have it done.
Hope everything is still going well for you guys. I'm adding my experience here to keep it with a same themed thread.
Prior to my transplant, I had to provide a dental clearance to the transplant team. I did this with enough time, I thought, but then it turned out that the dentists just sat on the report and never sent it in. It was my normal dentist's partner (her husband) and I guess he wasn't that organized. Luckily I called and was able to get it going, but not without stress. He told me that he wouldn't recommend that my wisdom teeth be extracted, but then wrote the opposite in the report ! Jeez !
The transplant center rejected the idea of extractions. The wisdom teeth were fine and I was on Zometa. But, I did have a tooth that was slightly suspicious. I had to get in with an oral surgeon within 24 hours because I was scheduled to have my harvest chemo the same week and that would take out my immune system. I also decided to have my head shaved prior to being admitted, so I had an appointment for a root canal and a head shave the same day. Woo-hoo! So much fun.
But, with that behind me, I had the Cytoxan and with lots of nausea meds, had very little trouble other than needing to rest for a couple of days. I began the Neupogen shots. I gave them to myself and they didn't hurt much, but it really gave me the heeby-jeebies. I believe it was two a day for ten days, unless my memory fails me. I can't remember when I got my Hickman line put in. I guess it was about four days before my harvest. It wasn't too bad, but I hated having to flush it with the solution. I'm glad it came out before I was released from the hospital.
My myeloma specialist is at Dana Farber in Boston and they are attached, both figuratively and literally (through a walkway) to Brigham and Women's Hospital. So, B and W is where I had it done. They do inpatient and are really good at what they do. It was a private room within a grouping of six (I believe) other private rooms where other patients are getting transplants. The ventilation is separate so that you are not getting recycled air from infected patients. I was very glad to have this done as an inpatient . I didn't have to think about anything other than getting to the bathroom and back to bed.
I was there for 16 days and, strangely, it didn't seem like that long. I don't know if my mind just went into some kind of time warp or what. I started the melphalan the day after I checked in and had it the following day also. The nurses gave me enough Italian ices, popsicles and ice to keep my mouth semi-frozen during the infusion. I never got mouth sores but I never want to see an Italian ice again for as long as I live. When I got home, I threw out all of the ones we had in our freezer.
I got my own stem cells back the next day. They had asked me if I wanted a chaplain there to bless them. At first I thought no (I'm not a churchgoer) but then decided 'what the heck" . My husband was there with me, the nurse and the chaplain. They had a pre-written blessing for the cells that was nice. We all laid our hands on the bag of my cells before they hooked it up. It was comforting.
The only problems I had were diarrhea and some nausea. They tested me twice for C-diff due the diarrhea. Negative both times, thank goodness. I only vomited twice and felt just a bit queasy. I give credit to the nurses for supplying the anti-nausea meds very skillfully and before I needed them That is key. Take them regularly and if you feel bad, ask for more before you really feel bad.
I was there during much of the time by myself because we live so far away, have a lot of dogs that need care, and my husband does not have sick or vacation days. He came up as much as he could and was very supportive, but I was fine when I was on my own. There is someone in your room so often that, even without a visitor, you really are not alone.
I had brought tons of DVDs, books, and my computer. I watched DVDs during the melphalan, but not much after those days. I don't think I read at all and I used my computer a little bit. I mostly just slept and watched the baseball playoffs. (The nurses were happy I had that on because the Red Sox had a shot !) It was like I was in my own time zone or something.
I also had my phone and talked and texted a lot with my husband, family and friends. Most of my friends and family are in California.
My recovery was pretty smooth. I was driving myself to my local doctor appointments the first week back (about five miles each way). I couldn't drive longer distances for about a month. I had a strange rash for about two months. It was pretty itchy for two or three weeks, but then began to subside. They gave me antihistamines and took me off everything else except valcyclovir [during that time. I felt kind of crummy for about a week to ten days and then just more tired than normal.
My husband had to be at work but we had a friend come once a day to check on me and take care of the dogs. I could pet the dogs and then wash my hands but couldn't do care for them for awhile.
Every night when my husband got home, he'd cook for me and run to the store for whatever sounded good to me which, for a while, was soup, crackers and pudding with an occasional frozen dinner. He set up a downstairs bedroom for me, but I found that I could go upstairs without a problem. It was great for naps though.
So now I'm 5 and a half months post transplant. My numbers are good, I feel good. I'm back on RVD but will probably be changing soon because I have new plasmacytomas on my skull. Who knows how that will play out.
After months of worrying about the transplant, it feels good to have it done.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Stem cell transplant - what to expect?
Thanks, Joy, for writing all of that up about your stem cell transplant experience. It is SOOO helpful!
Re: Stem cell transplant - what to expect?
Hi Cheryl!
I'm so glad it was helpful. That makes me feel good. I know this community has helped me so much, too.
I'm so glad it was helpful. That makes me feel good. I know this community has helped me so much, too.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Stem cell transplant - what to expect?
Hi Joy,
Thanks a lot for posting your experience in such detail. It was actually just what I needed to read right now, since I am heading into the transplant process myself a little later this summer (probably end of June/early July.) I keep envisioning all sorts of awful experiences and it is good to know that it wasn't so terrible for you.
At least, I have already had the harvest done and had the stem cells frozen, so that's one less thing I have to deal with. I know this sounds so weird, but one of my main fears is that something will happen to my stem cells, me, or the hospital in between my getting the melphalan and getting my stem cells back! The transplant doctor told me that transplant patients go home overnight after getting the melphalan, and are admitted the next day. I would feel a lot better if I could just stay in the hospital after the chemo! However, I have to figure that they know what they are doing Still, I have a feeling I will probably ask them "Are you sure my frozen cells are still there and are OK?"
That's interesting about the blessing of the stem cells! I'm not religious at all, but I agree, it does sound comforting! I have a nephew who is training to be a Catholic priest - he'll be a deacon by the time I'm going in for the transplant. Maybe I'll see if he'd be available for a blessing! I don't think he would object to blessing nonobservant Jewish stem cells if it were for a family member
I hope you continue to do well!
Karen
Thanks a lot for posting your experience in such detail. It was actually just what I needed to read right now, since I am heading into the transplant process myself a little later this summer (probably end of June/early July.) I keep envisioning all sorts of awful experiences and it is good to know that it wasn't so terrible for you.
At least, I have already had the harvest done and had the stem cells frozen, so that's one less thing I have to deal with. I know this sounds so weird, but one of my main fears is that something will happen to my stem cells, me, or the hospital in between my getting the melphalan and getting my stem cells back! The transplant doctor told me that transplant patients go home overnight after getting the melphalan, and are admitted the next day. I would feel a lot better if I could just stay in the hospital after the chemo! However, I have to figure that they know what they are doing
Still, I have a feeling I will probably ask them "Are you sure my frozen cells are still there and are OK?" That's interesting about the blessing of the stem cells! I'm not religious at all, but I agree, it does sound comforting! I have a nephew who is training to be a Catholic priest - he'll be a deacon by the time I'm going in for the transplant. Maybe I'll see if he'd be available for a blessing! I don't think he would object to blessing nonobservant Jewish stem cells if it were for a family member
I hope you continue to do well!
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Stem cell transplant - what to expect?
I have seen many different descriptions of transplant experiences; outpatient, inpatient, half and half. Mine was entirely inpatient. That is, I had to give myself the Neupogen shots, like Joy, and the central line placement was an outpatient surgery on a Thursday (I remember because it was street sweeping day and my sister had parked her car in the street. We thought we would be home before the sweeper came and so avoid the ticket, but we drove up just as the cop was writing her a parking ticket. I hopped out of the car, in all my post surgical glory, with tubes sticking up under my neckline and the bright purple stains from the swabs, and asked him for mercy since she had been my ride to the City of Hope. He changed the ticket to a 'warning' and went on his way with a new excuse story). Anyway ...
The following Monday, Tuesday and Wednesday were spent at a motel in Duarte while we did the stem cell harvest. Not bad at all, Boring, but I was able to knit a couple of hats for other cancer patients while I was in there. I checked into the City of Hope on Friday, began the melphalan on Saturday, had another one of those on Sunday, got my stem cells on Monday, and was stuck in there for three weeks (a C-Diff infection).
Goodness, they treated me like a queen in there! It took me about six weeks after I got home to start feeling 'normal,' and it wasn't a gradual process. One day, about a week before Christmas, a switch flipped and suddenly I went from feeling like I'd been run over by a Humvee (original military version) to feeling pretty good. I count my hair growth from that day, too.
Everybody is different, and every experience with this thing is, too, I suppose.
The following Monday, Tuesday and Wednesday were spent at a motel in Duarte while we did the stem cell harvest. Not bad at all, Boring, but I was able to knit a couple of hats for other cancer patients while I was in there. I checked into the City of Hope on Friday, began the melphalan on Saturday, had another one of those on Sunday, got my stem cells on Monday, and was stuck in there for three weeks (a C-Diff infection).
Goodness, they treated me like a queen in there! It took me about six weeks after I got home to start feeling 'normal,' and it wasn't a gradual process. One day, about a week before Christmas, a switch flipped and suddenly I went from feeling like I'd been run over by a Humvee (original military version) to feeling pretty good. I count my hair growth from that day, too.
Everybody is different, and every experience with this thing is, too, I suppose.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Stem cell transplant - what to expect?
Hello there,I have many of the same concerns as a person diagnosed with multiple myeloma last week and someone who was told to expect a SCT in a few months.My niece told me to watch the below video and I found it to be very comforting. Hope it is for you, too.Best,Edward
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GFNY1966 - Name: Edward
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 48
Re: Stem cell transplant - what to expect?
I already had a SCT, but enjoyed watching the video. Thanks for sharing it.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Stem cell transplant - what to expect?
Hi Edward,
If you haven't seen them already, there are a number of discussion threads here in the forum where forum members have posted regular updates during their stem cell transplants, providing details of the entire process.
You can find these discussion threads listed at this posting, "Useful links to existing forum discussions (about treatments & side effects)," in the section near the bottom with the heading,
"Stem Cell Transplant Experiences of Beacon Forum Members".
If you haven't seen them already, there are a number of discussion threads here in the forum where forum members have posted regular updates during their stem cell transplants, providing details of the entire process.
You can find these discussion threads listed at this posting, "Useful links to existing forum discussions (about treatments & side effects)," in the section near the bottom with the heading,
"Stem Cell Transplant Experiences of Beacon Forum Members".
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