Hi there,
I decided to start a thread with personal stem cell transplant experience for a couple of reasons. One is because this website has been so incredibly useful; it's so informative to read about others and their journey. While there are a lot of similarities in effects from treatments, everyone’s journey is their own. The other reason is I truly believe this will be therapeutic.
So far, I have completed my Velcade and dexamethasone treatment (started in the beginning of July and ended in late December) and there is zero detection of myeloma. I have gone through all the pretests (I had no idea there were so many of those lol).
Last week, I had my port put in. I was anxious about it and it turned out to be very non-eventful, thankfully. For the next five days I had the Zarxio (filgrastim-sndz) shot. That wasn’t exactly fun, but for the most part I just felt achy. I took extra strength Tylenol on schedule, which really helped.
Yesterday we showed up to begin the apheresis (stem cell collection). We took it as a good omen when they had told me my number had to be at a minimum of 10 in order to start the collection, and I was at a 67. Obviously my stem cells had been working hard to get into my blood stream. After a very long day of sitting there, they said we could go home and they would call us with the number of stem cells collected. They wanted to collect between 6 and 8 million (enough for two transplants). Turns out they collected 7.47 million stem cells in one sitting from me, and I therefore did not have to go back for anymore collection. Great news for us, and I’m scheduled to be admitted into the hospital on February 5th.
Forums
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DeeBaker45 - Name: D'Anne
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 45
Re: Dee’s stem cell transplant process
Thank you, Dee, for volunteering to share your stem cell transplant experience with members of the Beacon community. We hope the process is a smooth one for you and those close to you.
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: Dee’s stem cell transplant process
Thank you for sharing your experiences with us. I agree that it is great for those facing treatment to learn from others, but I also found it very useful to share my experience.
Good luck. We will be interested to hear your story and we will be with you.
Good luck. We will be interested to hear your story and we will be with you.
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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: Dee’s stem cell transplant process
Hi D'Anne,
Thanks for sharing your transplant experience, and congratulations on your successful stem cell collection. I hope the rest of the transplant process goes just as smoothly as the mobilization and collection have gone so far.
Good luck!
Thanks for sharing your transplant experience, and congratulations on your successful stem cell collection. I hope the rest of the transplant process goes just as smoothly as the mobilization and collection have gone so far.
Good luck!
Re: Dee’s stem cell transplant process
Hi Dee,
It looks like you are off to a good start! I wanted to reply to your post because we are on very similar treatment paths and are close in age (I am 47). I was diagnosed and started my induction treatment in August 2017. My induction regimen was Revlimid, Velcade, and dexamethasone (RVD). I had my melphalan treatment and an autologous stem cell transplant at the beginning of January 2018. I am now 25 days post transplant (yay!) and am feeling significantly better every day. My treatment has all been outpatient.
I wanted to reach out to you because I am recently on the "other side" and, fortunately, for me, everything went as planned, with no major issues. The keys for me in recovery were to keep eating small amounts frequently throughout the day (even if its the last thing you want to do), going for walks (however short) every day, and having excellent caregivers who kept my living space extra clean.
Wishing you the best of response and recovery and excited to hear how things go for you!
~Kari
It looks like you are off to a good start! I wanted to reply to your post because we are on very similar treatment paths and are close in age (I am 47). I was diagnosed and started my induction treatment in August 2017. My induction regimen was Revlimid, Velcade, and dexamethasone (RVD). I had my melphalan treatment and an autologous stem cell transplant at the beginning of January 2018. I am now 25 days post transplant (yay!) and am feeling significantly better every day. My treatment has all been outpatient.
I wanted to reach out to you because I am recently on the "other side" and, fortunately, for me, everything went as planned, with no major issues. The keys for me in recovery were to keep eating small amounts frequently throughout the day (even if its the last thing you want to do), going for walks (however short) every day, and having excellent caregivers who kept my living space extra clean.
Wishing you the best of response and recovery and excited to hear how things go for you!
~Kari
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Kari_g_w
Re: Dee’s stem cell transplant process
That is a great start! I had to sit around for three full days before they got enough of the stem cells to do the transplant. By the third day, I was really, really bored!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Dee’s stem cell transplant process
Well today is Day -1. I have been given the premeds, sucked on ice chips and slushees for the last 3 hours, and have gotten the chemo. All pretty low key so far. Tomorrow is transplant day 
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DeeBaker45 - Name: D'Anne
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 45
Re: Dee’s stem cell transplant process
Day 0
Today I got my stem cells put back into my body. So far still uneventful. My goal is to be the most boring patient they’ve had in terms of side effects. I did get the garlic / creamed corn smell taste and slight smell, but so far that’s been it.
I asked and they brought in an exercise peddler to keep in my room. Much easier than riding one gowned, gloved, and masked in the little exercise room they have. Between that and so far no side effects, it’s been a great “birthday”
Dee
Today I got my stem cells put back into my body. So far still uneventful. My goal is to be the most boring patient they’ve had in terms of side effects. I did get the garlic / creamed corn smell taste and slight smell, but so far that’s been it.
I asked and they brought in an exercise peddler to keep in my room. Much easier than riding one gowned, gloved, and masked in the little exercise room they have. Between that and so far no side effects, it’s been a great “birthday”
Dee
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DeeBaker45 - Name: D'Anne
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 45
Re: Dee’s stem cell transplant process
Glad to hear things went well and your day was "boring". Let's hope they all are fairly dull. I am about three weeks behind you with Day 0 scheduled for March 1. Your story is interesting and calming. Thanks for sharing.
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Pat H - Name: Pat
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept 2017
- Age at diagnosis: 54
Re: Dee’s stem cell transplant process
Glad to hear that things have gone smoothly for you so far, Dee.
Have your doctors given you an idea of what days you're to expect the worst of the side effects from the high-dose melphalan?
Also, can you walk around at the transplant center where you are? From what I understand, and I'm certainly not an expert, walking during the transplant process is good not just for the exercise that you get, but also for the movement and impact on the bones that occurs during walking.
Good luck!
Have your doctors given you an idea of what days you're to expect the worst of the side effects from the high-dose melphalan?
Also, can you walk around at the transplant center where you are? From what I understand, and I'm certainly not an expert, walking during the transplant process is good not just for the exercise that you get, but also for the movement and impact on the bones that occurs during walking.
Good luck!
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