My decision to undergo a transplant was helped so much by the posts made by Mark11, dogmom, Mark Pouley, and ACLinkBoca, that I want to pay it forward and document my own transplant experience. I've realized that everyone is very different, so the more experiences someone has to draw from, the better they can be prepared for their own transplant.
I was diagnosed with multiple myeloma back on May 19th when I was walking up some steps at work and my femur split in two! I was told immediately in the Emergency Room that I had multiple myeloma and started induction therapy two weeks later. I did four months of Revlimid, Velcade, and dexamethasone and achieved a complete response (CR) from the induction therapy. I was initially skeptical about pursuing a transplant. I had read so many posts about the difficulties encountered and the hope for new curative medicines. A post from Mark11 changed my mind. He convinced me that multiple myeloma is a "curable disease" for younger patients if attacked aggressively from the beginning, and I believe that. I will be undergoing my transplant at the Mayo Clinic here in Phoenix.
For the last two weeks, I have been undergoing the usual tests to make sure that my heart, lungs, kidneys, and liver can survive a transplant. Last Friday, Saturday, and Sunday I received the Neupogen injections to stimulate the stem cell production in my bone marrow. I did note quite a bit of fatigue from the Neupogen, but none of the bone pain that others had talked about. I took a Claritin (loratadine) the day before, the day of, and the day after each injection, as I had been told that would help.
Yesterday (Monday), I received my central line into my neck. That was the part of the entire transplant that I was most anxious over, but it was a breeze. I was given a twilight sedation for the procedure and felt and remembered nothing. The line itself, once in, is a nuisance, but is not painful or even really uncomfortable. Immediately after placement of the line, I was taken to start stem cell collection, as my CD34 numbers were very positive on the blood tests that morning. I sat for 5 hours in the Apheresis Unit, hooked up to the machine that separates the stem cells. Again, this was a total breeze. I read a book, watched some news on my phone, and took a 2 hour nap.
This morning when I went back for what was supposed to be my first day of collection, I was told that we had already collected 7 million stem cells, which would be enough for two transplants! So I wouldn't need any more collection and my line could be removed. The removal was done right there in the Apheresis Unit by a nurse while I was completely awake. Again, my worst fears were not realized and it was totally uneventful. But that is one long tube they pull out of your neck! I'm a little sore in the neck tonight, but overall this first step in my transplant process has not been bad at all.
I get my PICC line placed on November 10th, with high-dose melphalan on the 14th and reintroductions of stem cells on the 16th. I'll post more after those experiences.
Prayers and good vibes going out to my boy DeanUK, who I believe is starting his transplant this week.
Forums
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Thank you, Chad, for volunteering to share your stem cell transplant experience with members of the Beacon community. We hope the transplant experience is a smooth one for you and your family.
For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:
"Useful links to existing forum discussions"
in the section labeled
"Stem Cell Transplant Experiences of Beacon Forum Members"
Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.
There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".
For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:
"Useful links to existing forum discussions"
in the section labeled
"Stem Cell Transplant Experiences of Beacon Forum Members"
Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.
There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".
Re: Chad's Autologous Stem Cell Transplant Journal
Like you Chad, I found the stories from other patients very useful before going into my transplant. I'm happy you found my experience informative. As you noted, it seems everyone is different and that is really the biggest take-away.
That said, my advice is to listen to your care providers and follow all instructions, even if you don't want to or if it seems unnecessary. Try to stay active, at least a little bit everyday. Listen to your body; don't feel guilty resting when you need to.
Good luck. I will be pulling for you and follow your journey with great interest.
That said, my advice is to listen to your care providers and follow all instructions, even if you don't want to or if it seems unnecessary. Try to stay active, at least a little bit everyday. Listen to your body; don't feel guilty resting when you need to.
Good luck. I will be pulling for you and follow your journey with great interest.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Chad's Autologous Stem Cell Transplant Journal
Good luck.
I'm going in on the 8th of November, but have been warned that I may have to wait a few days for a bed to become available, which makes it more mentally difficult.
All the best. Regards,
Dean
I'm going in on the 8th of November, but have been warned that I may have to wait a few days for a bed to become available, which makes it more mentally difficult.
All the best. Regards,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Chad's Autologous Stem Cell Transplant Journal
Wishing you all the best, Chad.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: Chad's Autologous Stem Cell Transplant Journal
Hi Chad! All the best luck to you in your transplant!
You are having an autologous transplant, where the stem cells come from yourself, right? (The other kind is allogeneic, where the stem cells come from someone else).
Tracy
You are having an autologous transplant, where the stem cells come from yourself, right? (The other kind is allogeneic, where the stem cells come from someone else).
Tracy
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Chad's Autologous Stem Cell Transplant Journal
Mark and dogmom - Thanks! You both have no idea how helpful your experiences were in my making perhaps the biggest decision of my life.
Dean - Best of luck with that. Imagine us - two guys about the same age a world apart, going through the same trial. I'll be pulling for you, brother, and anxious to hear of your progress. Keep us posted.
TracyJ - Yes, I am doing the autologous transplant. I just did the collection of my cells earlier this week.
Dean - Best of luck with that. Imagine us - two guys about the same age a world apart, going through the same trial. I'll be pulling for you, brother, and anxious to hear of your progress. Keep us posted.
TracyJ - Yes, I am doing the autologous transplant. I just did the collection of my cells earlier this week.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Chad's Autologous Stem Cell Transplant Journal
Best wishes. I did an auto and it was the best decision I made! Prayers are with you.
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Tigerboy74 - Name: Mike
- Who do you know with myeloma?: Me and few others
- When were you/they diagnosed?: 2007
- Age at diagnosis: 32
Re: Chad's Autologous Stem Cell Transplant Journal
Hi chad,
Yes, you're right. Nearly the same age and going for our stem cell transplants the same week. This time last year I was Christmas shopping, and today I was shopping for my hospital stay. How life can change.
I'm having my line fitted on the 8th but have been informed I could be sent home with it until a bed is available. Not having an exact date also plays mind games.
Well, fingers crossed we both get through the stem cell transplant without too many problems. Don't mind admitting I'm scared, but it needs to be done.
As long as I'm Ok-ish for Christmas Day, to keep it as normal as I can for my young daughters, is my aim. Hopfully 2017 is a good year for us all.
All the best my American friend. Catch up soon
Regards, Dean
Yes, you're right. Nearly the same age and going for our stem cell transplants the same week. This time last year I was Christmas shopping, and today I was shopping for my hospital stay. How life can change.
I'm having my line fitted on the 8th but have been informed I could be sent home with it until a bed is available. Not having an exact date also plays mind games.
Well, fingers crossed we both get through the stem cell transplant without too many problems. Don't mind admitting I'm scared, but it needs to be done.
As long as I'm Ok-ish for Christmas Day, to keep it as normal as I can for my young daughters, is my aim. Hopfully 2017 is a good year for us all.
All the best my American friend. Catch up soon
Regards, Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Chad's Autologous Stem Cell Transplant Journal
Hello Chad!
Thank you for posting your experience. My husband is the same age as you, but multiple myeloma was found in September of this year after his kidney function tanked. He also is going to Mayo in Phoenix. I was / am still so scared as this has been such a whirlwind and we had a new baby born literally when he was diagnosed.
He has been receiving apheresis weekly and then they will also be doing a stem cell transplant, so if you could please continue to write your experiences with the transplant, I believe that will be helpful to not only myself but others going through the same experience!
I hope you are well and thoughts and prayers to you as you go through the transplant.
Thank you for posting your experience. My husband is the same age as you, but multiple myeloma was found in September of this year after his kidney function tanked. He also is going to Mayo in Phoenix. I was / am still so scared as this has been such a whirlwind and we had a new baby born literally when he was diagnosed.
He has been receiving apheresis weekly and then they will also be doing a stem cell transplant, so if you could please continue to write your experiences with the transplant, I believe that will be helpful to not only myself but others going through the same experience!
I hope you are well and thoughts and prayers to you as you go through the transplant.
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AZ mom - Name: Amy
- Who do you know with myeloma?: spouse
- When were you/they diagnosed?: Oct 2016
- Age at diagnosis: 46
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