shape
carat
color
clarity

Has anyone been a stem cell donor?

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
I am being tested tomorrow to see if I can be a stem cell donor for my brother. A few months ago he was diagnosed with a rare, and very aggressive t cell non Hodgkins lymphoma. After his first rounds of chemo this past Spring, he was actually feeling pretty good. Few side effects, he was still working, and, although he had lost his hair- that was about it. At his Petscan right after he finished- it showed he was clear of cancer. Unfortunately, within a month it had returned. Next chemo was with an experimental drug that had worked in 80% of the patients it had been given, but he got pancreatitis with it, very sick, and the cancer was still progressing. About 10 days ago he started a very aggressive chemo regime. It has devastated him. He can barely move, won't eat (he's dropped 20 pounds in the last 10 days), and looks like he's aged 20 years. AND he has to do it all again next week, and possibly 3 weeks after that. The oncologists think it is working, but will know better after the next round. If it's working, they want to do a stem cell transplant. Even with that , his odds are maybe 50%. Without it he has no chance. If neither my sister or i match, I guess they'll try to find someone through the registry. Hopefully, either she or I will match. I will know in a couple of weeks.

Life is not fair. My brother is a physician who has totally dedicated his life to saving others. He has lived and breathed medicine for as long as I can remember. When other Doctors would complain about long hours or working weekends- he never did- he loved his work. I'm so upset, I just had to vent a little. If you've made it through my long post- thank you for listening and please send lots of dust, prayers, or whatever you can.
 

maccers

Brilliant_Rock
Joined
Sep 19, 2012
Messages
1,167
Hi pinkjewel,

I have not been a stem cell donor but I did want to say I'm sorry you and your family are going through this. My thoughts are with you and your fmaily.
 

chrono

Super_Ideal_Rock
Premium
Joined
Apr 22, 2004
Messages
38,227
PJ,
I am so very sorry for your family. I hope that you are a good match and that the cancer will start showing signs of regression. (((Hugs)))
 

AprilBaby

Super_Ideal_Rock
Premium
Joined
Jul 17, 2008
Messages
12,660
I'm so sorry your brother is sick! I hope you are a match. Because of PS I am now a bone marrow registered donor for several years. I forget who started it but I think several people registered because of their post.
 

SB621

Ideal_Rock
Joined
Aug 25, 2009
Messages
7,863
Hugs PJ! I know we talked about your brother last month and I have kept him in my thoughts and prayers. I hope this experimental drug works and/ or your sister/ you are a match. I"m here for you if you need ANYTHING!
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
Thanks for the well wishes maccers, Chrono, and AprilBaby- it means a lot!

SB- unfortunately the experimental drug did not work. The chemo he's getting now is ICE (don't remember the actual drug names). Horrible stuff. Anyway, thanks for the offer- I'll let you know.
 

katharath

Ideal_Rock
Joined
Mar 5, 2013
Messages
2,848
Pinkjewel,

Your brother sounds like a wonderful person. I'm so sorry that he is going through this, and I hope the best for him and all of your family. I have no personal experience with this type of situation, but I do have a brother that I'm very close with, and it's hard to even imagine how difficult this must be for all of you right now. Fingers crossed, and wishing you all the best.
 

smitcompton

Ideal_Rock
Premium
Joined
Feb 11, 2006
Messages
3,030
Hi Pink Jewel.

I am so sorry for your troubles. My son had Non Hodgkins lymphoma several yrs go but is doing well at the moment. Its is heartbreaking, I know, and yes Life is certainly not fair. I wish him the best of everything and that the new medicine works. Hang-in there.


Annette
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
thank you katharath.

Smitcompton- I am so happy to hear that your son is doing well!! I didn't really know all that much about NHL until my brother was diagnosed. It is mind boggling how many different types there are- to the extent that I wonder why they are all given the same name. The research that has gone into NHL-b cell type is impressive. There are so many people that are now cancer free that a few years ago would not have had such a favorable outcome. T cell NHL research has lagged behind because it is more rare. Even with that said they are coming out with several new drugs to treat that and several of the ones in clinical trials look very promising. It's just sad that the t cell type my brother has is one of the very worse types a person can have. If he can at least get into remission, maybe one of the new drugs coming down the pipe will work for him,too.
 

smitcompton

Ideal_Rock
Premium
Joined
Feb 11, 2006
Messages
3,030
Hey Pink Jewel.

I know that there is so much research going in the bio-tech industry. I learned about this through, of all things, the stock market,
Its mind boggling how much they have progressed, and I have invested in some bio-tech myself. We actually cheer in my house when the news of the trial comes out on anything good or promising to do with cancer. In some ways its exciting what is going on out there. Let us hope your brother will be a beneficiary of that work. He deserves it!

Annette
 

Autumnovember

Ideal_Rock
Joined
Apr 28, 2010
Messages
4,384
Pinkjewel - I am an Oncology nurse so I administer chemotherapy to patients every day and know exactly what your brother is going through right now. I actually have had several patients with the same diagnosis who ended up getting a stem cell transplant with very successful results. Stay positive. I know its difficult more than ever to do so but its a really important part of all of this. I always tells my patients and their family members that regardless of what the doctors are saying number wise, you have to remain faithful and hopeful. I have seen so many of my patients get a bad prognosis and then turn around and do very well with treatment. Praying for you all and a successful outcome :halo:

Just saw he is on ICE therapy....very taxing, I have a few patients on it now minus the ifex but carboplatin and VP-16 are pretty potent when it comes to side effects. Lots of rest and lots of relaxation for him.
 

minousbijoux

Super_Ideal_Rock
Premium
Joined
Aug 5, 2010
Messages
12,688
Pinkjewel, I am so sorry to hear this. I am sending you both powerful healing prayers, positive thoughts, and magic dust. I hear that carboplatin is worse than awful - I hope your brother can get through it without any self judgement. It sounds like you are lucky to have him and he, you.
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
thank you for the perspective of an oncology nurse, AutumnNovember. I don't think he can do anything but relax and rest right now-lol. He's too weak to do much else. But he actually was feeling a tad better today and was able to eat a bit. He had been to the oncology clinic and they had given him platelets and a saline solution which maybe flushed some of the toxins. Anyway, some days are much better than others. I just hope that my sister or I are a match!
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
minousbijoux|1377123931|3507552 said:
Pinkjewel, I am so sorry to hear this. I am sending you both powerful healing prayers, positive thoughts, and magic dust. I hear that carboplatin is worse than awful - I hope your brother can get through it without any self judgement. It sounds like you are lucky to have him and he, you.

thanks minous- I appreciate all the prayers, good thoughts and dust. =)
 

packrat

Super_Ideal_Rock
Joined
Dec 12, 2008
Messages
10,614
I didn't realize you could do that-is there a way to sign up, like a registry, such as the bone marrow registry Be The Match? I'm signed up w/BTM last year and sent in my swabs.

Will keep my fingers crossed for you both and send some super good thoughts!
 

Jax172

Brilliant_Rock
Joined
Mar 11, 2002
Messages
1,257
My husband was the recipient of a stem cell transplant. His brother was not a match so we had to use the registry. Luckily they found a 10 out of 10 match for him. The transplant was a huge success (almost 4 years now!). A year after the transplant we foudn out who his donor was - a young lady who is a nurse. She said she had a fairly easy experience with it. Lots of shots leading up to spending a long time hooked up to a machine that filtered out her stem cells and put the rest of the blood back in. It wasn't a picnic but considering the potential life saving outcome it was not too difficult to bear. She offered to do it again if he ever needed it. (hope not!).

I hope you are a match. It never seems that life is fair does it? The good ones always seem to have the worst problems to bear. Sending good thoughts your way..
 

missy

Super_Ideal_Rock
Premium
Joined
Jun 8, 2008
Messages
50,583
pinkjewel, I have no experience to share but just wanted to add my good wishes for you and your brother. I will be keeping you both in my thoughts and prayers and hoping for a full recovery for him. (((Hugs))) to you both.
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
packrat|1377128806|3507630 said:
I didn't realize you could do that-is there a way to sign up, like a registry, such as the bone marrow registry Be The Match? I'm signed up w/BTM last year and sent in my swabs.

Will keep my fingers crossed for you both and send some super good thoughts!

Packrat- I think it may be the same Registry. I'm not sure, but I'll see what I can find out. That's awesome that you signed up!!..Thanks for the good wishes.
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
thanks missy and babs23r!!

Jax172- that is absolutely wonderful news about your husband and certainly gives me hope!!!! Did it take long to find a donor? I really hope my sister or I are a match, but have read that we only have a 20% chance of matching. :((

The peripheral stem cell harvest is the most common and the easiest on the donor, but I guess they still do the bone marrow harvest in some cases. The oncologists have not said which of these methods would be used. I guess it depend on the patient, but I'm not sure what the determining factors are. I would obviously do either for my brother, but I'm not sure if people on the registry would do the bone marrow harvest as easily as it is much more invasive. I won't worry about that right now. I'll just keep fingers crossed that I match!!
 

SB621

Ideal_Rock
Joined
Aug 25, 2009
Messages
7,863
PJ I'm taking you to lunch next week. Another wonderful PSer made my day/week last week with sending me a cake when I was having a very blah day. I'm paying it forward and taking you to lunch. I'm emailing you now about dates!

Sending you big hugs because we all have days where we feel defeated. Stay strong and I will continue to pray for your brother and hope you will be a match!
 

yennyfire

Ideal_Rock
Trade
Joined
Jun 6, 2010
Messages
6,823
Aww, PJ, I am so sorry that your brother is going through this! I hope that you are a match! My thoughts and prayers are with you an your family!
 

ame

Super_Ideal_Rock
Joined
Jul 7, 2004
Messages
10,794
This topic is VERY close to me and if I didn't know you weren't in my own family, I'd feel like you were. Big HUGE hugs to you. I really hope you're a match, and that if you are NOT that they find one. I am a donor, as are my siblings and most of my cousins and family members who are allowed. I carry my fob with my donor number on my keyring. My mom is livid she's not allowed to be one, my husband isn't allowed to be one due to medical conditions, but anyone in the family who can be is. Except one person, who is a spineless TOOL. Long story.

My uncle is on his third go around with I believe large cell lymphoma, and when he was "clear" after his 2nd diagnosis, he ended up being his OWN donor the 9/10 match within the family who initially agreed to be the donor sheepishly refused to do it (and didn't even tell my uncle!) and the closest match from the pool ended up not matching closely enough after the second round of testing. He was good for almost a year before he started noticing pain and got another PET scan and they found more.

So, unfortunately his cancer is back again for the 3rd time, so we don't know if he'll get that far again, but we're hoping this time WHEN he beats it, that there's a good match in the pool. He's not in great shape right now, fighting off serious infections during his treatments, but hopefully this is the final go around and he beats it for good this time. It's destroying him, unfortunately, this time, his morale, HE is different this time. I am an atheist, so I don't believe in higher power stuff, but I am sending all of my healing vibes to your brother, your family, as well. We walk in and raise money for the LLS Light the Night. Last year he was with us, though he needed a wheelchair about halfway through. But it was SO powerful the first time to see the sea of balloons, and where it's located is in the shadow of Siteman cancer center, which is where my uncle and a lot of folks here get their treatment.
 

ame

Super_Ideal_Rock
Joined
Jul 7, 2004
Messages
10,794
Here's my card from my keys:



We signed up and got swabbed at the Light the Night walk, btw. There's a lot of guidelines about age limits and health requirements. But we did it all in person.

donorfront.jpg

donorback.jpg
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
SB621|1377177575|3507959 said:
PJ I'm taking you to lunch next week. Another wonderful PSer made my day/week last week with sending me a cake when I was having a very blah day. I'm paying it forward and taking you to lunch. I'm emailing you now about dates!

Sending you big hugs because we all have days where we feel defeated. Stay strong and I will continue to pray for your brother and hope you will be a match!

thanks, SB. Looking forward to lunch and a little bling to take my mind off things!
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
yennyfire|1377184176|3508016 said:
Aww, PJ, I am so sorry that your brother is going through this! I hope that you are a match! My thoughts and prayers are with you an your family!

thank you so much, yennyfire. I'm hoping my sister or I match,too.
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
ame|1377186294|3508034 said:
This topic is VERY close to me and if I didn't know you weren't in my own family, I'd feel like you were. Big HUGE hugs to you. I really hope you're a match, and that if you are NOT that they find one. I am a donor, as are my siblings and most of my cousins and family members who are allowed. I carry my fob with my donor number on my keyring. My mom is livid she's not allowed to be one, my husband isn't allowed to be one due to medical conditions, but anyone in the family who can be is. Except one person, who is a spineless TOOL. Long story.

My uncle is on his third go around with I believe large cell lymphoma, and when he was "clear" after his 2nd diagnosis, he ended up being his OWN donor the 9/10 match within the family who initially agreed to be the donor sheepishly refused to do it (and didn't even tell my uncle!) and the closest match from the pool ended up not matching closely enough after the second round of testing. He was good for almost a year before he started noticing pain and got another PET scan and they found more.

So, unfortunately his cancer is back again for the 3rd time, so we don't know if he'll get that far again, but we're hoping this time WHEN he beats it, that there's a good match in the pool. He's not in great shape right now, fighting off serious infections during his treatments, but hopefully this is the final go around and he beats it for good this time. It's destroying him, unfortunately, this time, his morale, HE is different this time. I am an atheist, so I don't believe in higher power stuff, but I am sending all of my healing vibes to your brother, your family, as well. We walk in and raise money for the LLS Light the Night. Last year he was with us, though he needed a wheelchair about halfway through. But it was SO powerful the first time to see the sea of balloons, and where it's located is in the shadow of Siteman cancer center, which is where my uncle and a lot of folks here get their treatment.

Oh, Ame- I'm sorry to hear about your uncle. Knowing what my brother is going through, I feel for your uncle, you and your family. I don't know how a family member could welch out of donating when it might save someone's life (sigh). I'm wondering if your uncle has the same type of lymphoma as my brother. I believe his is t cell anaplastic large cell with the negative modifier. Is that what your uncle has,too? Here's something else that's a weird coincidence. I just sent all my bloodwork to Barnes Jewish in St. Louis- isn't that the same place? If I'm a match I think I need to be up there for about a week for shots,etc-I'd love to get together with you. I'm sure I'll be going to visit anyway at some point.

I'm sending healing thoughts right back at you for your uncle. Although it's hard for them, it's important that we try to keep their morale up.
 

SB621

Ideal_Rock
Joined
Aug 25, 2009
Messages
7,863
AME thanks for the link on your key chain :appl: I just registered and they are sending me my kit!
 

ame

Super_Ideal_Rock
Joined
Jul 7, 2004
Messages
10,794
pinkjewel|1377202064|3508203 said:
ame|1377186294|3508034 said:
This topic is VERY close to me and if I didn't know you weren't in my own family, I'd feel like you were. Big HUGE hugs to you. I really hope you're a match, and that if you are NOT that they find one. I am a donor, as are my siblings and most of my cousins and family members who are allowed. I carry my fob with my donor number on my keyring. My mom is livid she's not allowed to be one, my husband isn't allowed to be one due to medical conditions, but anyone in the family who can be is. Except one person, who is a spineless TOOL. Long story.

My uncle is on his third go around with I believe large cell lymphoma, and when he was "clear" after his 2nd diagnosis, he ended up being his OWN donor the 9/10 match within the family who initially agreed to be the donor sheepishly refused to do it (and didn't even tell my uncle!) and the closest match from the pool ended up not matching closely enough after the second round of testing. He was good for almost a year before he started noticing pain and got another PET scan and they found more.

So, unfortunately his cancer is back again for the 3rd time, so we don't know if he'll get that far again, but we're hoping this time WHEN he beats it, that there's a good match in the pool. He's not in great shape right now, fighting off serious infections during his treatments, but hopefully this is the final go around and he beats it for good this time. It's destroying him, unfortunately, this time, his morale, HE is different this time. I am an atheist, so I don't believe in higher power stuff, but I am sending all of my healing vibes to your brother, your family, as well. We walk in and raise money for the LLS Light the Night. Last year he was with us, though he needed a wheelchair about halfway through. But it was SO powerful the first time to see the sea of balloons, and where it's located is in the shadow of Siteman cancer center, which is where my uncle and a lot of folks here get their treatment.

Oh, Ame- I'm sorry to hear about your uncle. Knowing what my brother is going through, I feel for your uncle, you and your family. I don't know how a family member could welch out of donating when it might save someone's life (sigh). I'm wondering if your uncle has the same type of lymphoma as my brother. I believe his is t cell anaplastic large cell with the negative modifier. Is that what your uncle has,too? Here's something else that's a weird coincidence. I just sent all my bloodwork to Barnes Jewish in St. Louis- isn't that the same place? If I'm a match I think I need to be up there for about a week for shots,etc-I'd love to get together with you. I'm sure I'll be going to visit anyway at some point.

I'm sending healing thoughts right back at you for your uncle. Although it's hard for them, it's important that we try to keep their morale up.
Yep that's Barnes. Siteman is the Cancer Center there, and they're FANTASTIC. I do not know what exactly the specifics are of his condition, my mom hasn't given us ALL of those details, but I know it's some form of large cell lymphoma. Since it's the third time, I don't know if this particular time is somehow different, or if any of the three were the same, to be totally honest, because other than my cousins (his kids), they're trying to not get too carried away with TOO many details because the way stuff spreads through this family is pretty ridiculous. We still do not understand why there was ever a "no", but there's a long drawn out story so frankly and a whole new can of drama.

If you're coming up here, let me know, I work during the day and don't often get much for a lunch break, but I am free most weekend days and can make it happen, or can meet for a happy hour after work or something. We can make it happen! You need a hug!
 

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
SB621|1377204916|3508235 said:
AME thanks for the link on your key chain :appl: I just registered and they are sending me my kit!

Yay!! that's so cool, SB! =)
 
Be a part of the community Get 3 HCA Results
Top