This week's poll is about stem cell transplantation: how many and what kind you have had.
As usual, there are a few clarifications.
First, this question is for readers who have multiple myeloma (sometimes referred to as symptomatic or active myeloma; it is not intended for those with smoldering myeloma or MGUS).
Second, if you are a caregiver or family member of someone who has myeloma, feel free to answer on their behalf
Third, just as a reminder:
- An "auto" (autologous) transplant is one where a patient's own stem cells -- harvested at an earlier date -- are transplanted back into the patient's body.
- An "allo" (allogeneic) transplant is one where stem cells from a donor are transplanted into the patient's body.
Fourth, "mini allo" transplants should be counted as an "allo" transplant for the purpose of this poll.
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.
We ran this same poll about a year and a half ago, but we are running it again so that Beacon readers have access to the latest information and can compare it to the previous data.
2011 poll:
https://myelomabeacon.org/forum/weekly-poll-have-you-had-a-stem-cell-transplant-t684.html
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3 posts
• Page 1 of 1
Re: Weekly Poll - Have You Had A Stem Cell Transplant? - 201
Friday July 13th was stem cell transplant day. Talk about luck! What an ominous day to undergo something so risky. The nurse came in and weighed me. I had gained a couple of kilos from all the liquid that had been pumped into me in the last twenty-four hours. My left hand was swollen and I was afraid they would have to cut my wedding rings off. I wished I had left them at home.
At 2pm the stem cell transplant was under way. I had six bags of cells to get through at about fifteen minutes a bag. That meant I should be finished in an hour and a half. The bags were hooked up to the IV pole one by one and dripped into my arm exactly like getting a blood transfusion. As each bag nearly finished, the next was defrosted in preparation for hanging. It was all very low key and carried out efficiently and confidently by two nurses. I felt well during the transplant until five minutes before the end when a wave of nausea overtook me. I threw up in a plastic cup kindly provided to me earlier. Apparently it was the preservative the cells were frozen in that caused the nausea. Six bags full was a lot of preservative. When the nurses finished, they hooked me up to another IV to keep me hydrated and left. I sat there feeling a little stunned. I couldn’t believe that months of anticipation and trepidation of what the process would be like were over. The leaflets I had pored over on transplants, nutrition, the PICC, the melphalan, the side effects and the dangers could now be shelved. For six months I had been hearing about the autologous transplant. Now after an hour and a half, the transplant was complete.
July 14th was day plus one. I vomited again in the morning followed by diarrhea. The side effects had begun. A bowl of cereal arrived on a tray at the same time. I gave it a miss. I was feeling grungy but my white blood cell counts were good so I was paroled for the night. I just had to promise to return the next morning for a blood test. I agreed to the terms of my release. My mood brightened exponentially. On day plus two I had to return to the hospital for a blood count, but was released again for the night. Psychologically it was the best medicine they could have given me. Logically the nurse told me:
“You are more at risk of catching something in the hospital than at home, so go home while you can.”
On Day plus three, Alex dropped me and Abby off at Auckland hospital. I was hoping for a repeat of the previous day, a blood test and release. But my kidneys were in a bit of a crisis. My creatinine level was 150. My normal level was around 60. The preservative had damaged my kidneys. I needed lots of IV fluid to flush the poison out of them. I was going to be hooked to an IV for the next four hours.
The next day was another blood test and another bad result on my creatinine level. It had come down only slightly to 144. I was going to be given two litres of fluid through an IV again. A hematologist named Jim came to see me and talked about the effects of the freezing preservative on the kidneys.
“We’ve had lots of talks about how to minimize the damage to the kidneys. We are thinking that someone getting as much as six bags of cells should get their transplant over two days instead of one.”
“Uh, huh.” (Now they think of it!)
I wanted to ask if the kidneys were damaged permanently but something stopped me.
“The kidney problem is not a huge thing but its better avoided,” said Jim.
I was relieved to hear that. The nurse negotiated with the doctor to give me the two litres of IV fluid over two hours instead of four. My arm was freezing as it was pumped in and I had to put a jacket over it. But when I was released at 2pm instead of 4pm I figured it was worth it.
The next day I was given a blood test, and my creatinine level was still high. So I was given two more litres of sodium chloride in water over four hours. I was happy to go back to four hours instead of two because it was less cold and uncomfortable going into my vein and my heart didn’t beat so fast. When I finally finished at about five pm, for the fifth night in a row, I was released to spend the night in my own bed.
My habit each evening when I got home from the hospital was to have a hot bath. My left arm had to hang out of the tub to keep the PICC line dry but every day I looked forward to the routine. It allowed me to scrub off the smell and feel of the hospital. I filled up the tub, soaked my body, dipped my head under the water and washed my hair and scalp. Recovering from the high dose cyclophosphamide back in May, my head was now lightly covered with tiny strands of hair, like a baby’s scalp, with more hair in some places than others.
Thursday I checked in but didn’t check out of the hospital. I was having diarrhea again and my blood pressure was high at 158 over 102. My creatinine had lowered to 139, but was still more than twice my normal output. My mouth was starting to get inflamed. A red area around my PICC line had to be watched for infection. My neutrophil count was almost zero. On top of this there had been an “outbreak” in the hospital. The nurse wouldn’t tell me what sort of outbreak it was. But we were banned from using the communal kitchen and the cleaning staff would be working overtime to scrub every surface and throw out thousands of dollars’ worth of medical supplies that might be tainted. With no neutrophils, the word “outbreak” had me cowering in my room. I was given a GCSF injection to encourage my neutrophil count up. It was time for me to stay in the hospital 24/7 hiding from germs.
The prospect of the next five days with no immunity was pretty scary. Fever set in on Friday. The highest it registered was 38.4 but it kept above 38 for the next few days. By Monday I was still feverish. My white blood count was under .10 (normal was 4.00-11.00). My hemoglobin was 93 (normal was 115-155). My platelet count was under 10 (normal was 150-400). I had zero neutrophils (normal was 1.9-7.5). I was in bed a lot of the time, and spent my nights in feverish sweats. I hardly ate, slept a lot during the day and felt lousy. My anti-nausea medication and anti-diarrhea medication both did their jobs commendably however and both issues resolved themselves quickly. By the following Thursday my white blood cell count had risen to 1.97 and neutrophils to 1.37. I had bounced back enough that I was released to go home that night.
The next day, Friday July 27th, after a PICC dressing change and a blood transfusion to combat my low hemoglobin, I was officially discharged at 2.30pm. I had been in the hospital just two weeks.
For the next three weeks my blood tests were good enough to keep me out of the hospital. By the end of August I only had to get a blood test every three weeks.
I felt better and better as the weeks progressed. I got a lot of my energy back, my appetite got better and I even started to grow a bit of hair again. I was still alive. I couldn’t help but smile and dance around the room a little bit.
At 2pm the stem cell transplant was under way. I had six bags of cells to get through at about fifteen minutes a bag. That meant I should be finished in an hour and a half. The bags were hooked up to the IV pole one by one and dripped into my arm exactly like getting a blood transfusion. As each bag nearly finished, the next was defrosted in preparation for hanging. It was all very low key and carried out efficiently and confidently by two nurses. I felt well during the transplant until five minutes before the end when a wave of nausea overtook me. I threw up in a plastic cup kindly provided to me earlier. Apparently it was the preservative the cells were frozen in that caused the nausea. Six bags full was a lot of preservative. When the nurses finished, they hooked me up to another IV to keep me hydrated and left. I sat there feeling a little stunned. I couldn’t believe that months of anticipation and trepidation of what the process would be like were over. The leaflets I had pored over on transplants, nutrition, the PICC, the melphalan, the side effects and the dangers could now be shelved. For six months I had been hearing about the autologous transplant. Now after an hour and a half, the transplant was complete.
July 14th was day plus one. I vomited again in the morning followed by diarrhea. The side effects had begun. A bowl of cereal arrived on a tray at the same time. I gave it a miss. I was feeling grungy but my white blood cell counts were good so I was paroled for the night. I just had to promise to return the next morning for a blood test. I agreed to the terms of my release. My mood brightened exponentially. On day plus two I had to return to the hospital for a blood count, but was released again for the night. Psychologically it was the best medicine they could have given me. Logically the nurse told me:
“You are more at risk of catching something in the hospital than at home, so go home while you can.”
On Day plus three, Alex dropped me and Abby off at Auckland hospital. I was hoping for a repeat of the previous day, a blood test and release. But my kidneys were in a bit of a crisis. My creatinine level was 150. My normal level was around 60. The preservative had damaged my kidneys. I needed lots of IV fluid to flush the poison out of them. I was going to be hooked to an IV for the next four hours.
The next day was another blood test and another bad result on my creatinine level. It had come down only slightly to 144. I was going to be given two litres of fluid through an IV again. A hematologist named Jim came to see me and talked about the effects of the freezing preservative on the kidneys.
“We’ve had lots of talks about how to minimize the damage to the kidneys. We are thinking that someone getting as much as six bags of cells should get their transplant over two days instead of one.”
“Uh, huh.” (Now they think of it!)
I wanted to ask if the kidneys were damaged permanently but something stopped me.
“The kidney problem is not a huge thing but its better avoided,” said Jim.
I was relieved to hear that. The nurse negotiated with the doctor to give me the two litres of IV fluid over two hours instead of four. My arm was freezing as it was pumped in and I had to put a jacket over it. But when I was released at 2pm instead of 4pm I figured it was worth it.
The next day I was given a blood test, and my creatinine level was still high. So I was given two more litres of sodium chloride in water over four hours. I was happy to go back to four hours instead of two because it was less cold and uncomfortable going into my vein and my heart didn’t beat so fast. When I finally finished at about five pm, for the fifth night in a row, I was released to spend the night in my own bed.
My habit each evening when I got home from the hospital was to have a hot bath. My left arm had to hang out of the tub to keep the PICC line dry but every day I looked forward to the routine. It allowed me to scrub off the smell and feel of the hospital. I filled up the tub, soaked my body, dipped my head under the water and washed my hair and scalp. Recovering from the high dose cyclophosphamide back in May, my head was now lightly covered with tiny strands of hair, like a baby’s scalp, with more hair in some places than others.
Thursday I checked in but didn’t check out of the hospital. I was having diarrhea again and my blood pressure was high at 158 over 102. My creatinine had lowered to 139, but was still more than twice my normal output. My mouth was starting to get inflamed. A red area around my PICC line had to be watched for infection. My neutrophil count was almost zero. On top of this there had been an “outbreak” in the hospital. The nurse wouldn’t tell me what sort of outbreak it was. But we were banned from using the communal kitchen and the cleaning staff would be working overtime to scrub every surface and throw out thousands of dollars’ worth of medical supplies that might be tainted. With no neutrophils, the word “outbreak” had me cowering in my room. I was given a GCSF injection to encourage my neutrophil count up. It was time for me to stay in the hospital 24/7 hiding from germs.
The prospect of the next five days with no immunity was pretty scary. Fever set in on Friday. The highest it registered was 38.4 but it kept above 38 for the next few days. By Monday I was still feverish. My white blood count was under .10 (normal was 4.00-11.00). My hemoglobin was 93 (normal was 115-155). My platelet count was under 10 (normal was 150-400). I had zero neutrophils (normal was 1.9-7.5). I was in bed a lot of the time, and spent my nights in feverish sweats. I hardly ate, slept a lot during the day and felt lousy. My anti-nausea medication and anti-diarrhea medication both did their jobs commendably however and both issues resolved themselves quickly. By the following Thursday my white blood cell count had risen to 1.97 and neutrophils to 1.37. I had bounced back enough that I was released to go home that night.
The next day, Friday July 27th, after a PICC dressing change and a blood transfusion to combat my low hemoglobin, I was officially discharged at 2.30pm. I had been in the hospital just two weeks.
For the next three weeks my blood tests were good enough to keep me out of the hospital. By the end of August I only had to get a blood test every three weeks.
I felt better and better as the weeks progressed. I got a lot of my energy back, my appetite got better and I even started to grow a bit of hair again. I was still alive. I couldn’t help but smile and dance around the room a little bit.
-
Marie Black
Feb 2003
I was diagnosed in July 2000 at Brisbane's Mater Hospital by Dr Stephen Fanning. A chemo pump was tried in 2000/2001 but a desired 'plateau' wasn't achieved. Apheresis was begun late in 2001 and my cells were frozen and kept in storage at Brisbane's Wesley Hospital. In February 2003 I entered the Wesley on my 65th birthday Feb 16. Three weeks later and 19 kilograms lighter I emerged and went home. Bacterial infections caused my return to the Mater Hospital but gradually I got the benefit of the transplant. It gave me five years of low and steady multiple myeloma figures. But in 2008 the multiple myeloma began rising again. Dr Fanning was able to have me admitted to a status of 'Compassionate' by Celgene and I've been on 25 ml 28 day programs since then. I've just begun my fourth year! When I was diagnosed my multiple myeloma figure was 53...it is now 4. I lead an active life at 75 including being on two local committees, on one I'm President/Secretary. I regard myself as extremely lucky!
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KenGuy23
3 posts
• Page 1 of 1