I will answer Daniel first. A mini-allo is non-myeloablative, so my bone marrow is not being "killed" like it was before the auto transplant. The chemo I am on is designed to suppress my immune system but not wipe it out entirely. Interestingly, it was explained that by about 4 weeks after I should be 90% my brother's cells and 10% mine (they do a blood test to determine the grafting).
As far as the etoposide use, I cannot answer your question. This is not a common conditioning regimen, but SCCA / University of Washington does have a protocol for it, and it worked beautifully for me as I said in my initial post.
Today I had my first does of fludarabine. It was a quick 30-minute infusion and required no pre-meds other than an oral Zofran (ondansetron). I feel completely normal this afternoon and consider that a good sign. I have two more doses to go!
Cindy
Forums
-
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
Hello Cindy,
Thanks for taking the time to share your experience. I had a mini-allo on May 21, 2014 and I am doing great! My only sibling was not a match. Fortunately, there was a 10/10 marker match on the donor registry.
Just as a point of note, I had tandem auto transplants (a total of 3 transplants in 10 months!)
In February, as I was weaned off the anti rejection meds, I developed chronic GVHD. So far, it's been more of a nuisance than anything else. It has affected my eyes, skin, and liver. All are coming under control with steroids and symptom-focused management. I am currently on a clinical trial that monitors the treatment and response to chronic GVHD.
Please feel free to pm if you have any specific questions! I have found that there just isn't much out there for those of us who are living on the edge of the treatment spectrum.
Thanks for taking the time to share your experience. I had a mini-allo on May 21, 2014 and I am doing great! My only sibling was not a match. Fortunately, there was a 10/10 marker match on the donor registry.
Just as a point of note, I had tandem auto transplants (a total of 3 transplants in 10 months!)
In February, as I was weaned off the anti rejection meds, I developed chronic GVHD. So far, it's been more of a nuisance than anything else. It has affected my eyes, skin, and liver. All are coming under control with steroids and symptom-focused management. I am currently on a clinical trial that monitors the treatment and response to chronic GVHD.
Please feel free to pm if you have any specific questions! I have found that there just isn't much out there for those of us who are living on the edge of the treatment spectrum.
-
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
Thanks, everyone, for giving Cindy so much encouragement as she starts on her transplant journey, and for asking questions and sharing experiences that you've had that also shed light on the allo transplant process.
And special thanks, of course, to Cindy for sharing her transplant experience with all of us.
On the issue of etoposide for stem cell mobilization, there was a study published several years ago on the subject that we reviewed here at The Beacon. Here's a link to the article:
"Etoposide Is Highly Effective For Stem Cell Mobilization In Multiple Myeloma Patients," The Myeloma Beacon, Aug 23, 2010
It would not surprise me if there have been other studies on the subject published more recently, but that was one that I found quickly.
And special thanks, of course, to Cindy for sharing her transplant experience with all of us.
On the issue of etoposide for stem cell mobilization, there was a study published several years ago on the subject that we reviewed here at The Beacon. Here's a link to the article:
"Etoposide Is Highly Effective For Stem Cell Mobilization In Multiple Myeloma Patients," The Myeloma Beacon, Aug 23, 2010
It would not surprise me if there have been other studies on the subject published more recently, but that was one that I found quickly.
-
Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: My mini-allo transplant journey
Hi Cindy,
That bag of meds brings back memories! Hard to believe I do not take any oral meds now.
I used fludarabine for 5 days prior to getting high dose melphalan. I only remember some fatigue as a side effect prior to getting the melphalan.
You are overdue for something to go smooth. All positive vibes being sent your way that it starts now. My family refers to late 2010 to late 2011 as "the year Mark HAD cancer". That is going to be your family in a couple of years as well!
Mark
That bag of meds brings back memories! Hard to believe I do not take any oral meds now.
I used fludarabine for 5 days prior to getting high dose melphalan. I only remember some fatigue as a side effect prior to getting the melphalan.
You are overdue for something to go smooth. All positive vibes being sent your way that it starts now. My family refers to late 2010 to late 2011 as "the year Mark HAD cancer". That is going to be your family in a couple of years as well!
Mark
-
Mark11
Re: My mini-allo transplant journey
Cindy,
Thanks for sharing your experience as you go through your mini allo! I hope the very best for you during the course of the treatment and recovery and most especially for the outcome!!
Thanks for sharing your experience as you go through your mini allo! I hope the very best for you during the course of the treatment and recovery and most especially for the outcome!!
-
EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: My mini-allo transplant journey
I had my second dose of fludarabine this morning and continue to enjoy no side effects. I took my first dose of cyclosporine (3 huge smelly capsules - I had been warned to air them out) as well. I did get a burning sensation in my hands which lasted for about 2 hours, but that has now passed. This is a potential side effect which I should adjust to, but can also indicate too high of a dosage. My drug levels will be checked twice a week and doses altered when necessary.
My brother started his Neupogen shots yesterday and is already experiencing some bone pain. Apparently, when you don't have depressed blood counts to begin with, the side effects appear sooner and can be stronger. He refuses to complain about it - I am very fortunate he could take two weeks off work and fly to Seattle to do this for me.
Cindy
My brother started his Neupogen shots yesterday and is already experiencing some bone pain. Apparently, when you don't have depressed blood counts to begin with, the side effects appear sooner and can be stronger. He refuses to complain about it - I am very fortunate he could take two weeks off work and fly to Seattle to do this for me.
Cindy
-
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
Cindy-
Sending you love and lots of energy for a successful mini-allo transplant. I found that asking people to do cell dances during my auto transplant seemed to spur my stem cells to engraft quickly. It can't hurt. Sending lots of love to your brother, too, for agreeing to be your donor. What a wonderful, loving sibling gift.
Keep posting your progress. The use of allo transplants with younger people with myeloma seems to be more common these days. And, there aren't many reports about the process before, during, and after the procedure. You are providing all of us with a wonderful education and peak into the process.
Nancy in Phila
Sending you love and lots of energy for a successful mini-allo transplant. I found that asking people to do cell dances during my auto transplant seemed to spur my stem cells to engraft quickly. It can't hurt. Sending lots of love to your brother, too, for agreeing to be your donor. What a wonderful, loving sibling gift.
Keep posting your progress. The use of allo transplants with younger people with myeloma seems to be more common these days. And, there aren't many reports about the process before, during, and after the procedure. You are providing all of us with a wonderful education and peak into the process.
Nancy in Phila
-
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
I had my third dose of fludarabine yesterday and started experiencing some fatigue and mild nausea. The nurse thinks it is more likely due to the cyclosporine, but it is manageable. Today I only had labs and a magnesium infusion. Cyclosporine causes the body to waste magnesium, so this will likely be a very regular treatment.
My brother had his first of two collection days today. He collected 10.6 million cells today. They want a minimum of 10 million and say that up to 20 million shows additional engraftment benefits. I am hopeful that tomorrow will be just as good as today.
Tomorrow is radiation and transplant day, and I appreciate all your well wishes!
Cindy
My brother had his first of two collection days today. He collected 10.6 million cells today. They want a minimum of 10 million and say that up to 20 million shows additional engraftment benefits. I am hopeful that tomorrow will be just as good as today.
Tomorrow is radiation and transplant day, and I appreciate all your well wishes!
Cindy
-
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
Best of luck to you, Cindy, and kudos to your brother ... a real hero!
Re: My mini-allo transplant journey
Cindy,
All the best to you and your brother today!
Teresa
All the best to you and your brother today!
Teresa
- I had a mini-allo and I got much more than this t-shirt!!!
- image.jpg (39.17 KiB) Viewed 378 times
-
Teresa C. - Name: Teresa C.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 51
Return to Treatments & Side Effects