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Has anyone been a stem cell donor?

pinkjewel

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Well, I already got the results of my test. they told me it would be 2 weeks, but it's only been 4 days. Unfortunately I am not a match as I only have half. The good news is that my sister did match!!!!! So, my brother undergoes another ICE chemo treatment this weekend and in a couple of weeks after they'll do another petscan. Depending on the results they may do another round of ICE, or may wait a few weeks and do the stem cell transplant. We're just happy one of us match.
 

missy

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pinkjewel|1377724682|3511509 said:
Well, I already got the results of my test. they told me it would be 2 weeks, but it's only been 4 days. Unfortunately I am not a match as I only have half. The good news is that my sister did match!!!!! So, my brother undergoes another ICE chemo treatment this weekend and in a couple of weeks after they'll do another petscan. Depending on the results they may do another round of ICE, or may wait a few weeks and do the stem cell transplant. We're just happy one of us match.

That's wonderful news pinkjewel!!! So happy your sister is a match for your brother!!! Sending you all lots of good luck dust and positive thoughts for a successful outcome. :appl:
 

rainwood

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PJ -

It's good to hear your sister is a match. The doctors will be trying to get your brother's "tumor load" down as a low as possible before the transplant which is why they''ll be doing more chemo. My husband had several different treatments in the three months before transplant trying to accomplish the same thing. It's tough to go through but it increases the transplant's chances of success.

All the best to your family as you all go through this.
 

ame

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pinkjewel|1377724682|3511509 said:
Well, I already got the results of my test. they told me it would be 2 weeks, but it's only been 4 days. Unfortunately I am not a match as I only have half. The good news is that my sister did match!!!!! So, my brother undergoes another ICE chemo treatment this weekend and in a couple of weeks after they'll do another petscan. Depending on the results they may do another round of ICE, or may wait a few weeks and do the stem cell transplant. We're just happy one of us match.
That. is. FANTASTIC! It'll be worth it to be sure that he's as clean as possible before they do the stem cell transplant. You want as much chance of that environment being perfect so that when they're in they're working and helping as much as possible.
 

Snicklefritz

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So glad to hear your sister is a match! I'm keeping your brother and family in my thoughts, pinkjewel. It's clear you've all been through a lot, and I'm hopeful things will continue to look up!
 

pinkjewel

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missy, ame, rainwood, and Snicklefritz- thanks for the well wishes and support!! I guess it's a waiting game now. It will be at least a couple of months before it's done so we'll just have to be patient and keep praying for a good outcome.
 

pinkjewel

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Thought I might update the thread. I have just returned home from a week in St. Louis where my brother has just had his stem cell transplant. My sister was the donor and that was not without a little drama. They needed to put a central line in her as her veins weren't large enough. After the "harvest" they left the central line in overnight to make sure that they had harvested enough. She got a call at 7pm that she had met the "goal" and to come in the next day to have the central line pulled. Unfortunately, she woke me up at 1:30 am that night as the central line had started bleeding. We called EMS who rushed us to the ER. After they determined she wasn't going to "bleed out" we stayed in the ER until an attending ER doc finally came in. Meanwhile they had been packing this thing with 2 inch piles of gauze that it still kept bleeding through!! He said he was just going to pull it out -OMG- the thing was HUGE!!!!!!!!! I can't believe this thing was just sitting in my sister's neck!! Anyway- they finally let us go around 9am when it finally stopped bleeding. I hope the transplant works for my brother. They actually harvested enough of my sister's cells that they froze half in case he needs another one. His prognosis is fair. Unfortunately the chemo significantly damaged his heart and he is in congestive heart failure. Some of the damage may be reversible and we will only know with time. He will always need to be on meds for it. The decreased heart function also makes his ability to fight infections very poor which is always a worry since their immunity has already been compromised with the chemo and transplant. All we can do now is hope and pray.
 

kenny

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Pinkjewel, big hugs to you.
I'm so sorry your family has to go through this.
I'm not religious so I don't pray, but I do send you and your siblings my best wishes for the best outcome.
This is all so important and out of our control.
 

NOYFB

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pinkjewel|1377724682|3511509 said:
Well, I already got the results of my test. they told me it would be 2 weeks, but it's only been 4 days. Unfortunately I am not a match as I only have half. The good news is that my sister did match!!!!! So, my brother undergoes another ICE chemo treatment this weekend and in a couple of weeks after they'll do another petscan. Depending on the results they may do another round of ICE, or may wait a few weeks and do the stem cell transplant. We're just happy one of us match.


This is awesome news! I will keep your family in my thoughts and prayers. DH and I were approached at a festival over the summer by an organization signing up bone marrow donors. Unfortunately, I was over the age limit so I was unable to participate. I will look into stem cell donation, though.

ETA: Just saw your update. I'm sorry there was so much drama with sister's central line. That must have been scary! I am keeping my fingers crossed that your brother continues to recover!
 

pinkjewel

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thanks, Kenny.

Lil Misfit- bone marrow donors and stem cell donors are pretty much the same thing with the same guidelines, so chances are you wouldn't be able to be a stem cell donor either. I'm not sure if platelet donors, though, have the same age restrictions and I know the hospital needed those as well. Interestingly, enough, my sister was told that male stem cell donors are usually preferred unless the female donor has never been pregnant. Something about each pregnancy decreases something in the stem cells that makes them compatible. I don't know if this is true or why it would be, but when she was getting the injections to increase production of the stem cells, that's what the nurse told her. As she has not had children, she was considered a perfect donor.
 

ame

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pinkjewel|1381691288|3537055 said:
Thought I might update the thread. I have just returned home from a week in St. Louis where my brother has just had his stem cell transplant. My sister was the donor and that was not without a little drama. They needed to put a central line in her as her veins weren't large enough. After the "harvest" they left the central line in overnight to make sure that they had harvested enough. She got a call at 7pm that she had met the "goal" and to come in the next day to have the central line pulled. Unfortunately, she woke me up at 1:30 am that night as the central line had started bleeding. We called EMS who rushed us to the ER. After they determined she wasn't going to "bleed out" we stayed in the ER until an attending ER doc finally came in. Meanwhile they had been packing this thing with 2 inch piles of gauze that it still kept bleeding through!! He said he was just going to pull it out -OMG- the thing was HUGE!!!!!!!!! I can't believe this thing was just sitting in my sister's neck!! Anyway- they finally let us go around 9am when it finally stopped bleeding. I hope the transplant works for my brother. They actually harvested enough of my sister's cells that they froze half in case he needs another one. His prognosis is fair. Unfortunately the chemo significantly damaged his heart and he is in congestive heart failure. Some of the damage may be reversible and we will only know with time. He will always need to be on meds for it. The decreased heart function also makes his ability to fight infections very poor which is always a worry since their immunity has already been compromised with the chemo and transplant. All we can do now is hope and pray.
Wow! I am hopeful for a better update, and holy crap that is scary about your sister!!! I will keep thinking about you and your brother for sure. That update is frustrating to read so BIG hugs. I am disappointed I couldn't hug you in person!

My uncle is in radiation because the chemo wasn't working this time. My aunt clarified that this time the lymphoma is in his spinal fluid and there were cells on his optic nerves (your spinal fluid goes into them) but no tumors, and that's kind of a variation/mutation from last time. He showed us his "mask" that they screw down over his face for radiation the other day...holy. hell. no. It is so hard to stay positive, and we can see it's wearing on him at this point too. He's a former baseball player, and is WAY into the sport, so as into watching the Cards play, knowing that right before they won the 2011 Series he was awaiting his first diagnosis, he's a little bittersweet about the playoffs season right now, since yknow, he's still fighting.

Thoughts all around!
 

pinkjewel

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Ame- I am sorry I never replied to your post- this has been a difficult thread for me.

Unfortunately, my brother passed away yesterday. He put up a very brave battle, but there were mistakes made by the hospital which did not help the stem cell graft take hold. Would he have made it without the errors? We will never know... thank you to everyone who sent dust or prayers. We will miss him and I'm sure his patients that he devoted his life to caring for and saving their lives, will miss him, too. It will be a sad Christmas without him.
 

Andelain

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I'm so sorry for your loss. :((


As for your original questoin, I once came within hours of donating. I was a match, but my recipient died the day I went to the hospital for the donation. He was 9. ;(
 

ame

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pinkjewel|1386957442|3573703 said:
Ame- I am sorry I never replied to your post- this has been a difficult thread for me.

Unfortunately, my brother passed away yesterday. He put up a very brave battle, but there were mistakes made by the hospital which did not help the stem cell graft take hold. Would he have made it without the errors? We will never know... thank you to everyone who sent dust or prayers. We will miss him and I'm sure his patients that he devoted his life to caring for and saving their lives, will miss him, too. It will be a sad Christmas without him.
Oh my goodness. I was so hoping to see a different post from you when I clicked this. You have my deepest sympathies and I am sending my tightest hugs to you!!!
 

pinkjewel

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Thank you, Andelain. How very sad that your donor recipient did not make it long enough for you to donate and was so young,too. :(sad
 

pinkjewel

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ame|1386959168|3573716 said:
pinkjewel|1386957442|3573703 said:
Ame- I am sorry I never replied to your post- this has been a difficult thread for me.

Unfortunately, my brother passed away yesterday. He put up a very brave battle, but there were mistakes made by the hospital which did not help the stem cell graft take hold. Would he have made it without the errors? We will never know... thank you to everyone who sent dust or prayers. We will miss him and I'm sure his patients that he devoted his life to caring for and saving their lives, will miss him, too. It will be a sad Christmas without him.
Oh my goodness. I was so hoping to see a different post from you when I clicked this. You have my deepest sympathies and I am sending my tightest hugs to you!!!

Thank you so much Ame. I certainly had hoped I would be posting better news,too. He just kept having one complication after another. In the end he was suffering so much that I hope he has found peace now.
 

smitcompton

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Hi,

So sorry for your loss. I'm sure he will be remembered for all the good he has done.

Annette
 

violet3

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Pinkjewel, my deepest condolences to you and your family. I am so sorry to hear about your brother - it sounds like he was an amazing man who touched and improved the lives of many. I'll be keeping your family in my prayers this Christmas.
 

Smith1942

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smitcompton|1377111714|3507428 said:
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

Annette - I am so sorry that your son has been ill, and so glad that he's doing well right now.
 

Smith1942

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pinkjewel|1386957442|3573703 said:
Ame- I am sorry I never replied to your post- this has been a difficult thread for me.

Unfortunately, my brother passed away yesterday. He put up a very brave battle, but there were mistakes made by the hospital which did not help the stem cell graft take hold. Would he have made it without the errors? We will never know... thank you to everyone who sent dust or prayers. We will miss him and I'm sure his patients that he devoted his life to caring for and saving their lives, will miss him, too. It will be a sad Christmas without him.


Pinkjewel, I am so, so sorry. This is not what I expected to read when I clicked on this thread. Wow....I'm just shocked and don't know what to say. My heart goes out to you. It really does. I am just so, so sorry for your loss. At least he is not suffering any more. I will raise a glass to him tonight. You and your family are in my thoughts.
 

SMC

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pinkjewel, so sorry for your loss. It's horrible when someone we love leaves us too soon. He will live on in your and your family's memories.
 

Rosebloom

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PinkJewel - I am so, so sorry to read about your brother. I will keep him in my prayers this Christmas.

Thank you so much for starting this thread, even though I'm sure it must have been very difficult. I didn't know anything about becoming a stem cell donor. After reading your posts in August, I became one and encouraged all my family to do so too. Several of us signed up. And then last week my sister-in-law was diagnosed with a blood and bone cancer and will likely need a stem cell transplant. We are devastated about the news of course. But I am so grateful that I had an opportunity to educate myself and my family about this in advance. It has eased our minds and hearts this past week knowing that we are on the registry ourselves. Thank you.
 

TooPatient

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I'm so sorry for your loss. My thoughts are with you and your family.
 
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