PBSC - Bone Marrow [Donor]

Questions on how we spend our money and our time - consumer goods and services, home and vehicle, leisure and recreational activities
Post Reply
Topic Author
Slowmaha
Posts: 138
Joined: Fri Feb 21, 2014 6:00 pm

PBSC - Bone Marrow [Donor]

Post by Slowmaha »

Random question, I'm one of two "selectees" for a particular patient, now they are just figuring out who will be primary and donate. The other guy will be on deck. I've committed to doing it if I'm selected as primary, I'm just curious to hear a first person account of the PBSC blood, not bone drilling) process. Anyone gone through this and care to share your experience?

Thanks.
Last edited by Slowmaha on Wed Sep 24, 2014 7:51 pm, edited 1 time in total.
maple92
Posts: 22
Joined: Mon Oct 08, 2012 8:41 pm

Re: PBSC - Bone Marrow

Post by maple92 »

Hi slowmaha

I got selected as a potential donor, but there must have been a better match as I did not get a call back for more. When I got the call they asked for a blood sample. The initial testing (In the US typically done via the National Marrow Donor Program or NMDP) takes buccal swabs initially to get you into their registry for preliminary info. If the prelim info says you may be a potential match, then you may be called for a blood sample which can be analyzed to see if you are a very good "match".

While I was not selected, I also helped manage a bone marrow transplant program. If you were selected as the candidate and agreed to be the donor, you would likely undergo a physical exam/review first to make sure physically everything was ok to move forward. By your subject line, I take it you are looking at PBSC or blood stem cells which are retrieved via an IV type line (versus in the past where the standard was retrieval of stem cells via the marrow in the pelvic bones i.e. in the OR). PBSC is less invasive. A donor would typically be given a medication to help stimulate the release of the stem cells into the peripheral blood stream. Following this, you would then be connected to what is called an apheresis machine (you can think somewhat similar to a dialysis type machine) whereby your blood is essentially filtered, the stem cells are collected from the blood and the remaining blood is returned to you. Typically this is 1-3 days on the neighborhood of 4-6 hours a day.

"The Marrow in Me" is a book by Kevin Walsh (can find on Amazon) that you may find interesting about bone marrow donation and a very, very touching story.

Best wishes on your decision
User avatar
Jazztonight
Posts: 1339
Joined: Tue Feb 27, 2007 11:21 pm
Location: Lake Merritt

Re: PBSC - Bone Marrow

Post by Jazztonight »

My best friend from HS had a bone marrow transplant about 20 years ago (from his brother) and survived.

He's now 67. His brother died several years ago from complications of, well, bad health.
"What does not destroy me, makes me stronger." Nietzsche
dolphinsaremammals
Posts: 2094
Joined: Tue Jul 22, 2014 4:18 pm

Re: PBSC - Bone Marrow

Post by dolphinsaremammals »

Slowmaha wrote:Random question, I'm currently a coin flip away from being a bone marrow donor. Anyone gone through this and care to share your experience?

Thanks.
I was a blood donor for a long time, until I developed a heart condition and felt that the weakness afterwards would be an issue.

I had looked into being a bone marrow donor (the type where they bore into your pelvic bones), but I was turned off by what I took to be a lack of candor by the person I spoke to on the phone. Someone I knew who had donated said the pain was considerable for some time afterward. I could deal with some pain for a worthwhile cause, but the phone person denied there was anything of the sort, which sounds illogical. I felt that they were so desperate to get donors that the effect on the donor was not important to them.

That said, I would donate in a nanosecond to a family member. I would have signed up then except I was a bit fearful of the effects on me and didn't feel I would be in good hands.
Topic Author
Slowmaha
Posts: 138
Joined: Fri Feb 21, 2014 6:00 pm

Re: PBSC - Bone Marrow [Donor]

Post by Slowmaha »

I can see how my "coin flip" statement may have been misconstrued as 50/50 to DECIDE to donate. I'm one of two "selectees" for a particular patient, now they are just figuring out who will be primary and donate. The other guy will be on deck. I've committed to doing it if I'm selected as primary, I'm just curious to hear a first person account of the PBSC blood, not bone drilling) process. Sounds like PBSC is a more pleasant process but not without side effects.
ctiger
Posts: 2
Joined: Mon Jul 28, 2014 2:15 pm

Re: PBSC - Bone Marrow [Donor]

Post by ctiger »

My brother in law was in the donor system and got called out of the blue as he was a match.

He donated to a total stranger and it was painful. He saved her life and every year she sends him a card that says happy "birth" day on the anniversary of his donation. She also made them bracelets that match that he never takes off. Every time he tells it Iget choked up. His Dad died of cokon cancer at a young age and he felt helpless. He wanted a way to help someone else.

I am registering to be a donor now after hearing his story. I cant imagine giving the gift of life. How awesome.
RobInCT
Posts: 396
Joined: Sun Dec 09, 2012 1:58 pm

Re: PBSC - Bone Marrow [Donor]

Post by RobInCT »

My girlfriend and I have been registered for approximately 5 years. I've never been called, she's been called 3 times. Each time she's been called they've ultimately ended up using a different donor, but the first time she was called, she got put in touch through mutual friends with someone who had donated before through the PBSC procedure so that she could talk through the experience.

The guy she talked to told her that the worst part of the experience for him was sitting in the chair all day hooked up to the needles--said it was really boring. He got injections for 5 days before the the donation and said around the 4th or 5th day of the injections, he started feeling a little stiff and achy, sort of like he'd feel after a hard workout at the gym. Then the day after the donation, he was a little tired, but not so tired that he couldn't go to work. He said he felt back to 100% within a few days, only missed work the day of the actual donation.

I don't know if age/sex has any effect on things, but she says she'd guess the guy spoke to was in his late 20s, looked to be in pretty good shape. He also said he'd been called a few times and not selected prior to the time he actually donated. So if you don't get selected this time, you may get called again. Apparently some people's gene combinations are more popular than others'.
Topic Author
Slowmaha
Posts: 138
Joined: Fri Feb 21, 2014 6:00 pm

Re: PBSC - Bone Marrow [Donor]

Post by Slowmaha »

RobInCT wrote:My girlfriend and I have been registered for approximately 5 years. I've never been called, she's been called 3 times. Each time she's been called they've ultimately ended up using a different donor, but the first time she was called, she got put in touch through mutual friends with someone who had donated before through the PBSC procedure so that she could talk through the experience.

The guy she talked to told her that the worst part of the experience for him was sitting in the chair all day hooked up to the needles--said it was really boring. He got injections for 5 days before the the donation and said around the 4th or 5th day of the injections, he started feeling a little stiff and achy, sort of like he'd feel after a hard workout at the gym. Then the day after the donation, he was a little tired, but not so tired that he couldn't go to work. He said he felt back to 100% within a few days, only missed work the day of the actual donation.

I don't know if age/sex has any effect on things, but she says she'd guess the guy spoke to was in his late 20s, looked to be in pretty good shape. He also said he'd been called a few times and not selected prior to the time he actually donated. So if you don't get selected this time, you may get called again. Apparently some people's gene combinations are more popular than others'.

Thank you, that's very helpful. I had totally forgot I registered when I first joined the Navy in the late 90s. Talk about an out of the blue phone call! I can handle achy and bored!

Thanks again.
gogleheads.orb
Posts: 194
Joined: Fri Oct 18, 2013 12:34 pm

Re: PBSC - Bone Marrow [Donor]

Post by gogleheads.orb »

I was selected once, but they didn't end up going through with it. In the end they said the patient didn't need it at this time. There was some delay in my process due to the fact that the people who were taking my blood didn't store the kits they were given correctly and it all had to be redone. Later one someone mentioned that it is possible that the patient died in the time that they were preparing to take my marrow. I hope this isn't true , but I'll never know.

None of this is very relevant to you, but in my memory the woman who called to ask me to do it was very good. By far the best telemarketer I have ever talked to. She knew everything about the procedure and took as much time as I needed. In my memory it was possible that you wouldn't be feeling well for a few weeks around the donation. I was at the tail end of a grad program at the time and I could probably have stayed in bed for two weeks and no one would have noticed. It was an ideal time for me.

Good luck if they choose you. I remember at the time talking to others about the donation. One woman said that she wouldn't do it because it is too serious of a procedure. In my mind if you are given the opportunity to save to life of another with no risk to your own life it is very hard to say no.
bobinberea
Posts: 137
Joined: Tue Jan 12, 2010 10:16 pm

Re: PBSC - Bone Marrow

Post by bobinberea »

maple92 wrote: While I was not selected, I also helped manage a bone marrow transplant program. If you were selected as the candidate and agreed to be the donor, you would likely undergo a physical exam/review first to make sure physically everything was ok to move forward. By your subject line, I take it you are looking at PBSC or blood stem cells which are retrieved via an IV type line (versus in the past where the standard was retrieval of stem cells via the marrow in the pelvic bones i.e. in the OR). PBSC is less invasive. A donor would typically be given a medication to help stimulate the release of the stem cells into the peripheral blood stream. Following this, you would then be connected to what is called an apheresis machine (you can think somewhat similar to a dialysis type machine) whereby your blood is essentially filtered, the stem cells are collected from the blood and the remaining blood is returned to you. Typically this is 1-3 days on the neighborhood of 4-6 hours a day.
I had an "autologous" stem cell transplant in 2009 in which my own stem cells were harvested and then returned to me after heavy duty chemotherapy. (If one receives stem cells from a donor that's called an "allogeneic" stem cell transplant.) The description above of how the stem cells are harvested matches my experience. No poking the bones of the donor, but rather hooking up to an apheresis machine that magically filters out the particular component of the blood that is desired. I was lucky: we collected enough stem cells for two transplants (one put in storage for possible future use) in two days. I don't think my two sessions took much more than 4 hours each. I relaxed in a bed with warm comfy blankets and watched TV. Nothing to be afraid of.
dolphinsaremammals
Posts: 2094
Joined: Tue Jul 22, 2014 4:18 pm

Re: PBSC - Bone Marrow [Donor]

Post by dolphinsaremammals »

Does this mean that the boring into the pelvic bones is no longer done, and has been replaced by this blood procedure? That would be useful information to know.
bobinberea
Posts: 137
Joined: Tue Jan 12, 2010 10:16 pm

Re: PBSC - Bone Marrow [Donor]

Post by bobinberea »

dolphinsaremammals wrote:Does this mean that the boring into the pelvic bones is no longer done, and has been replaced by this blood procedure? That would be useful information to know.
To my knowledge, stem cells are routinely harvested today through the apheresis process only. That is certainly how it was done for me in 2009. No more poking the bone, so potential donors don't need to fear bone poking anymore!!

However, if you are 'lucky' enough to be a blood cancer patient, you still might be poked in a hip bone to do a bone marrow biopsy. It's not pleasant, but it's tolerable. I've been lucky: in 8 1/2 years with my ailment, I think I've been poked only three times.
Minot
Posts: 454
Joined: Sat Jan 29, 2011 1:35 pm

Re: PBSC - Bone Marrow [Donor]

Post by Minot »

funeshah
Posts: 48
Joined: Thu Aug 28, 2014 11:05 am

Re: PBSC - Bone Marrow [Donor]

Post by funeshah »

Hi all - I've recently been notified that I'm the best match for a patient for a Peripheral Blood Stem Cell donation.

In fact, I'm lining up dates with the donation center in parallel to this thread.

I wanted to understand 2 components:
1. Given the procedure, would I be able to utilize Short Term Disability on an intermittent basis to cover appointments and donation center visits? I ask because I only have very limited vacation time to utilize. I'm 100% committed to donating, but would like to use my limited vacation time as needed to spend time with my family if at all possible. (I also travel quite a bit for work, so my limited vacation time is very valuable).

My employer is supportive of the cause, but has indicated that I should reach out to HR to determine appropriate steps. As a last-resort, they indicated I can use vacation time

2. What are side effects that folks have experienced and what is the "typical" recovery time for folks that have donated via this method?

Looking forward to feedback. I'm nervous (for the process) but excited to be able to help someone else in need (that I have never met).

Thanks,
Post Reply