Teresa-
I love the t-shirt that they gave you! The graphic to the side of the message says it all: You are a hero, as is your brother. You are now enveloped in a bubble of healing energy and love for the success of this procedure. I know that there is a lot of positive energy through prayers, thoughts, and love coming your way from the members of this community, your family, and many others.
You go girl!
Nancy in Phila
Forums
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: My mini-allo transplant journey
Hi Teresa - I love that shirt, and I could not agree more with what it says!!!
Hi Cindy - Positive vibes being sent that yesterday was the last time you will ever need any chemo! My Day Zero was very uneventful. I basically slept right through it.
Hi Cindy - Positive vibes being sent that yesterday was the last time you will ever need any chemo! My Day Zero was very uneventful. I basically slept right through it.
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Mark11
Re: My mini-allo transplant journey
DanielR wrote:
Hi Daniel,
I have just been through a stem cell transplant in Cape Town, South Africa, and the use of etoposide here is pretty standard. It seems to work really well in mobilising stem cells and 7 hours on the machine seemed to harvest enough for the transplant.
The only downside of etoposide for me was that, before your stem cells come up, they go down ... and I ended up in hospital with a temp and very low WBC for a while. But, once they kicked in, the counts rose really quickly!
I went and looked up etoposide and found that [stem cell mobilization] is indeed one of its uses. On the other hand, I don't recall having heard of anyone else having used it.
Clearly, at least in your case, it works. I can't help but wonder why it's not used more often, especially for those of us who were not able to collect enough healthy cells for a second transplant
Hi Daniel,
I have just been through a stem cell transplant in Cape Town, South Africa, and the use of etoposide here is pretty standard. It seems to work really well in mobilising stem cells and 7 hours on the machine seemed to harvest enough for the transplant.
The only downside of etoposide for me was that, before your stem cells come up, they go down ... and I ended up in hospital with a temp and very low WBC for a while. But, once they kicked in, the counts rose really quickly!
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
Re: My mini-allo transplant journey
Today is Day 1 of my allo journey.
Yesterday started with a lab draw which included levels of cyclosporine and sirolimus. That was followed by a two-hour fluid infusion in preparation for the total body irradiation (TBI). At TBI, they re-measured my width at various locations and then set me up. I laid on my back along the wall and diodes were attached to measure the dose. During the radiation, I felt nothing and it took about 20 minutes. Then they spun the gurney around and did the same thing to my other side. It felt like a non-event. I had a quick meeting with the doctor and was done.
I then walked upstairs to the apheresis clinic to check on my brother donor. Within 5 minutes of arriving, I began vomiting. My dad and I decided to walk down to the hotel where my brother was staying so I could nap for a little while. I continued to be ill, so the doctors decided to bring me back to triage for fluids and IV Ativan and Zofran.
Once 2 p.m. arrived, they wheeled me to infusion to start my stem cell infusion. I slept through most of the first bag and my brother and the second bag of cells arrived about 2 hours later. His donation was 24.6 million cells. The goal was for 10-20 million. He experienced a lot of bone pain and was given higher doses of Neupogen than I ever got. I don't know if that is standard or was tied to his size (he is more then double me).
The doctor and PA came to see me while I was getting the infusion and said my levels of cyclosporine and sirolimus were both too high and to take modified doses.
I slept on the way home in the car and immediately went to bed. My mom woke me up to take my 10 p.m. medications, which now also includes the MMF (mycophenolate mofetil, CellCept). So far today I have had a lab draw and I am waiting for my home infusion kits to arrive. I have been sleeping most of the day and that is expected to be the case for at least a week post radiation. I will take it!
Enjoy our donation picture below!
Yesterday started with a lab draw which included levels of cyclosporine and sirolimus. That was followed by a two-hour fluid infusion in preparation for the total body irradiation (TBI). At TBI, they re-measured my width at various locations and then set me up. I laid on my back along the wall and diodes were attached to measure the dose. During the radiation, I felt nothing and it took about 20 minutes. Then they spun the gurney around and did the same thing to my other side. It felt like a non-event. I had a quick meeting with the doctor and was done.
I then walked upstairs to the apheresis clinic to check on my brother donor. Within 5 minutes of arriving, I began vomiting. My dad and I decided to walk down to the hotel where my brother was staying so I could nap for a little while. I continued to be ill, so the doctors decided to bring me back to triage for fluids and IV Ativan and Zofran.
Once 2 p.m. arrived, they wheeled me to infusion to start my stem cell infusion. I slept through most of the first bag and my brother and the second bag of cells arrived about 2 hours later. His donation was 24.6 million cells. The goal was for 10-20 million. He experienced a lot of bone pain and was given higher doses of Neupogen than I ever got. I don't know if that is standard or was tied to his size (he is more then double me).
The doctor and PA came to see me while I was getting the infusion and said my levels of cyclosporine and sirolimus were both too high and to take modified doses.
I slept on the way home in the car and immediately went to bed. My mom woke me up to take my 10 p.m. medications, which now also includes the MMF (mycophenolate mofetil, CellCept). So far today I have had a lab draw and I am waiting for my home infusion kits to arrive. I have been sleeping most of the day and that is expected to be the case for at least a week post radiation. I will take it!
Enjoy our donation picture below!
- CindyAndBrother.jpg (149.33 KiB) Viewed 650 times
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: My mini-allo transplant journey
I like your t-shirts better than mine! You look great!
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Teresa C. - Name: Teresa C.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 51
Re: My mini-allo transplant journey
Day 5 - 95 to go!
I have been feeling reasonably well although fatigued. For some reason, I can't sleep much despite being tired. I am now on my third dose of cyclosporine, trying to get the levels right. My magnesium home infusion amount has been raised as well. Yesterday I found out the C. diff I developed during my ASCT has returned, so I started Flagyl (metronidazole) for that. I am also officially neutropenic, so Levaquin (levofloxacin) was started. I counted that I now have 32 pills a day to swallow, which definitely makes it hard to eat.
Today I have had swollen red feet and ankles with pitting edema, which could be a drug side effect or early GVHD. I will find out tomorrow in clinic.
Yesterday my college senior daughter came over to my parents home where I am staying and we spent 5 hours doing a 1000-piece jigsaw puzzle. That almost felt like a summer vacation memory.
Thanks for riding along with me!
Cindy
I have been feeling reasonably well although fatigued. For some reason, I can't sleep much despite being tired. I am now on my third dose of cyclosporine, trying to get the levels right. My magnesium home infusion amount has been raised as well. Yesterday I found out the C. diff I developed during my ASCT has returned, so I started Flagyl (metronidazole) for that. I am also officially neutropenic, so Levaquin (levofloxacin) was started. I counted that I now have 32 pills a day to swallow, which definitely makes it hard to eat.
Today I have had swollen red feet and ankles with pitting edema, which could be a drug side effect or early GVHD. I will find out tomorrow in clinic.
Yesterday my college senior daughter came over to my parents home where I am staying and we spent 5 hours doing a 1000-piece jigsaw puzzle. That almost felt like a summer vacation memory.
Thanks for riding along with me!
Cindy
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: My mini-allo transplant journey
Hi Cindy,
I did not sleep so well either. I used tacrolimus as opposed to cyclosporin. They are in the same class of drugs. For me, the tacrolimus was like a non-steroidal version of dex. I had trouble sleeping and it made me irritable.
Hopefully you are feeling better this morning.
Mark
I did not sleep so well either. I used tacrolimus as opposed to cyclosporin. They are in the same class of drugs. For me, the tacrolimus was like a non-steroidal version of dex. I had trouble sleeping and it made me irritable.
Hopefully you are feeling better this morning.
Mark
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Mark11
Re: My mini-allo transplant journey
Day 9
Since I have last written. I have had another increase in my cyclosporine dose and more swelling and burning, primarily in my feet (also some in my hands). The doctor believes this is cyclosporine related and has asked me to wait it out. It is certainly not intolerable, but I'm getting close to having to wear my slippers to clinic
My counts remain low but just above the transfusion threshold. My brother and I are the same blood type, so I did not take on a new blood type like I would have if his were different.
I am still pretty fatigued but I am outpatient, so I'm happy. The other interesting side effect is I am cold all the time. I used to run hot, so this is a strange sensation for me.
Thank you to those who have complimented the shirts. I made mine before my first transplant and I made my brother's for this transplant.
Since I have last written. I have had another increase in my cyclosporine dose and more swelling and burning, primarily in my feet (also some in my hands). The doctor believes this is cyclosporine related and has asked me to wait it out. It is certainly not intolerable, but I'm getting close to having to wear my slippers to clinic
My counts remain low but just above the transfusion threshold. My brother and I are the same blood type, so I did not take on a new blood type like I would have if his were different.
I am still pretty fatigued but I am outpatient, so I'm happy. The other interesting side effect is I am cold all the time. I used to run hot, so this is a strange sensation for me.
Thank you to those who have complimented the shirts. I made mine before my first transplant and I made my brother's for this transplant.
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: My mini-allo transplant journey
Hi Cindy,
Same with me. Everyone complained when they came into my room because of how high I kept the temperature. I was told some patients have that from the tacrolimus, so it could be another side effect from the cyclosporine. I could not wait to get off the tacrolimus!
I hope all is well today.
Mark
"The other interesting side effect is I am cold all the time."
Same with me. Everyone complained when they came into my room because of how high I kept the temperature. I was told some patients have that from the tacrolimus, so it could be another side effect from the cyclosporine. I could not wait to get off the tacrolimus!
I hope all is well today.
Mark
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Mark11
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