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Has anyone been a stem cell donor?

pinkjewel

Ideal_Rock
Joined
Aug 1, 2011
Messages
2,362
ame|1377205119|3508238 said:
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!

Aw, thanks Ame!! I'll let you know when I make plans to be up there.
 

ame

Super_Ideal_Rock
Joined
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Messages
10,868
SB621|1377204916|3508235 said:
AME thanks for the link on your key chain :appl: I just registered and they are sending me my kit!
Awesome! I am glad it helped, hope that you can get registered and squared away!
 

ame

Super_Ideal_Rock
Joined
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Messages
10,868
pinkjewel|1377207089|3508255 said:
ame|1377205119|3508238 said:
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!

Aw, thanks Ame!! I'll let you know when I make plans to be up there.
Excellent. Look forward to meeting you, though understandably crappy circumstances.
 

Jax172

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Joined
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pinkjewel|1377176024|3507949 said:
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!!

No it didn't take long - They contacted several potential matches at once and I think we had about a 75% response rate where they went in for the further testing. I think it was probably about a week or two in all. My husband wasn't in as dire a circumstance as your brother though so it may be pushed to be faster for him.

I am a part of the registry and I think most people that sign up are aware that it could be either method for retrieval. If you sign up you are pretty committed to doing it in most cases. Life does get in the way sometimes though and people who signed up may not be in the best situation at the time they are called for further testing (own health problems, or family issues, etc..) I think if they go for the further testing they will go through with it either way.
 

mjr1

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You and your family will be in my prayers for a good match, rapid healing and good health. My nephew (who is a physician FWIW) was a donor about 2 years ago. He donated via pheresis. He took injections to "build up" his blood for a few days before with minimal side effects. Some mild flu like symptoms, some long bone/muscle tenderness. His mother went with him while he was donating and stayed for a day after, mostly to just hang with him. He missed a day or two of work because it was not done at the hospital he was working at and he had to travel a few hours away. He was a registry donor, meaning he did not know the person-it was a random match. He did get a letter about a year later from the man who received his cells. The man was alive and well and spending glorious time with his children and family. For my nephew it was just the right thing to do. Like brushing your teeth at bed time. He is an amazing young man. Our friends and family supported both him and the recipient with our prayers. Literally hundreds of people were united in prayer for a stranger. I continue to remember this man in my prayers. My nephews friends like to joke that this man got "super man cells" as my nephew is 6 feet plus tall, blond, athletic, smart..... Really, he makes me so proud. Good luck to you and your brother. I wish you all the best.
 

Resonance.Of.Life

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I have not yet donated stem cells, but I am a regular blood and platelet donor as well as being on the bone marrow registry. I perform pheresis on a regular basis (dendreon, platelet, granulocytes, ect) on donors/and or patients. Please let me know if you have any questions :)
 

rainwood

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PJ -

I know A LOT more about this topic than I'd like because my husband had a stem-cell transplant for chronic lymphocytic leukemia/small cell lymphoma just over two years ago. Whoever is the donor is given a GSF shot or shots to stimulate stem cell production and then has a process over the course of two days (about 3 hours or so each day) where they harvest the stem cells. The GSF shots can cause bone pain for some people, and the harvest requires an IV line be inserted, but it's apparently not that painful at least according to his donor. His brother wasn't a match, but my husband was lucky that someone in the registry was a perfect 12/12 match. We owe his life to a woman in Europe who was willing to go through this for a STRANGER. We are forever grateful to her even though we don't know who she is. If it's a bone marrow transplant, it involves harvesting the marrow which is a more invasive process, but it's similar to the procedure (bone marrow biopsy) that my husband has gone through numerous times so it's certainly doable.

This is going to sound strange, but the stem-cell transplant with all its ups and downs like a medical rollercoaster ride was easier than some of the chemo he went through. He's now doing okay. The leukemia/lymphoma isn't gone, but there are other some other drugs that in conjunction with the transplant may still knock it out for good. And don't feel bad if you're not a match, someone else might be. There are a lot of people in the registry.

If you have other questions, fire away. This is a tough, tough thing to have to deal with and I'm so sorry to hear what your brother is going through.
 

Sky56

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My prayers are with your brother and you and your family.
 

pinkjewel

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Messages
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Jax172|1377214915|3508305 said:
pinkjewel|1377176024|3507949 said:
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!!

No it didn't take long - They contacted several potential matches at once and I think we had about a 75% response rate where they went in for the further testing. I think it was probably about a week or two in all. My husband wasn't in as dire a circumstance as your brother though so it may be pushed to be faster for him.

I am a part of the registry and I think most people that sign up are aware that it could be either method for retrieval. If you sign up you are pretty committed to doing it in most cases. Life does get in the way sometimes though and people who signed up may not be in the best situation at the time they are called for further testing (own health problems, or family issues, etc..) I think if they go for the further testing they will go through with it either way.

OK- thanks for the information. =)
 

pinkjewel

Ideal_Rock
Joined
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Messages
2,362
mjr1|1377227007|3508440 said:
You and your family will be in my prayers for a good match, rapid healing and good health. My nephew (who is a physician FWIW) was a donor about 2 years ago. He donated via pheresis. He took injections to "build up" his blood for a few days before with minimal side effects. Some mild flu like symptoms, some long bone/muscle tenderness. His mother went with him while he was donating and stayed for a day after, mostly to just hang with him. He missed a day or two of work because it was not done at the hospital he was working at and he had to travel a few hours away. He was a registry donor, meaning he did not know the person-it was a random match. He did get a letter about a year later from the man who received his cells. The man was alive and well and spending glorious time with his children and family. For my nephew it was just the right thing to do. Like brushing your teeth at bed time. He is an amazing young man. Our friends and family supported both him and the recipient with our prayers. Literally hundreds of people were united in prayer for a stranger. I continue to remember this man in my prayers. My nephews friends like to joke that this man got "super man cells" as my nephew is 6 feet plus tall, blond, athletic, smart..... Really, he makes me so proud. Good luck to you and your brother. I wish you all the best.

Wow- your nephew sounds very special. Thank you for relating his experience.
 

pinkjewel

Ideal_Rock
Joined
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Messages
2,362
rainwood|1377241854|3508516 said:
PJ -

I know A LOT more about this topic than I'd like because my husband had a stem-cell transplant for chronic lymphocytic leukemia/small cell lymphoma just over two years ago. Whoever is the donor is given a GSF shot or shots to stimulate stem cell production and then has a process over the course of two days (about 3 hours or so each day) where they harvest the stem cells. The GSF shots can cause bone pain for some people, and the harvest requires an IV line be inserted, but it's apparently not that painful at least according to his donor. His brother wasn't a match, but my husband was lucky that someone in the registry was a perfect 12/12 match. We owe his life to a woman in Europe who was willing to go through this for a STRANGER. We are forever grateful to her even though we don't know who she is. If it's a bone marrow transplant, it involves harvesting the marrow which is a more invasive process, but it's similar to the procedure (bone marrow biopsy) that my husband has gone through numerous times so it's certainly doable.

This is going to sound strange, but the stem-cell transplant with all its ups and downs like a medical rollercoaster ride was easier than some of the chemo he went through. He's now doing okay. The leukemia/lymphoma isn't gone, but there are other some other drugs that in conjunction with the transplant may still knock it out for good. And don't feel bad if you're not a match, someone else might be. There are a lot of people in the registry.

If you have other questions, fire away. This is a tough, tough thing to have to deal with and I'm so sorry to hear what your brother is going through.

Wow- rainwood, it sounds like it's been a scary journey for you and your husband. I'm very happy to hear he's doing OK and with so many drugs in research and newly released I will hope and pray that something will get rid of his cancer for good. You are so right that it is a very tough thing to deal with for both the patient and his/her loved ones. Thank you for sharing your experience. I really had no idea that with such a small community like PS that so many people would have had their lives touched by stem cell transplants.

That's wonderful that a registry donor was such a close match. I hope that my brother can find as good a match. Thank you for your offer to answer questions. I do have one. Did the donor come all the way from Europe to your husband's hospital? I was under the impression that the donor needed to be in the same place at the time of the transplant.
 

pinkjewel

Ideal_Rock
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Sky56|1377247359|3508523 said:
My prayers are with your brother and you and your family.
thank you very much, Sky56.
 

pinkjewel

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Resonance.Of.Life|1377231667|3508481 said:
I have not yet donated stem cells, but I am a regular blood and platelet donor as well as being on the bone marrow registry. I perform pheresis on a regular basis (dendreon, platelet, granulocytes, ect) on donors/and or patients. Please let me know if you have any questions :)

ROL- are you a nurse? I may have some questions for you if I end up being the donor. thank you for your offer.
 

lulu

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I know how you feel. I lost a brother to an aggressive sarcoma two years ago. You'll be in my prayers.
 

pinkjewel

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lulu|1377288156|3508795 said:
I know how you feel. I lost a brother to an aggressive sarcoma two years ago. You'll be in my prayers.

lulu, I'm so sorry for your loss. Lots of hugs to you.

Cancer seems to be getting it's nasty clutches on more and more people that I know. I'm afraid it is all the terrible chemicals we breathe, eat and drink. Our foods are all processed, our livestock given antibiotics and hormones, our fruits and vegetables are sprayed with pesticides,as well as the air above, our drinking water is full of chemicals. I think our ancestors were much healthier without all of these things. People may live longer now than before because medicine has made great strides, but I'm not sure we are healthier.
 

rainwood

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PJ

To answer your question, no the donor did not fly here to donate. They harvested the stem cells then had them sent by plane from Europe. They then get processed at the blood bank (not entirely sure what they do there) and then are infused into the recipient as soon as they arrive at the hospital. They started my husband's transplant at 1:45 a.m. for that reason. We are on the West Coast so it's still doable having a donor in Europe and they've got the logistics down pat.

I don't know if the same is true for a bone marrow transplant though. Any more questions, just let me know. I'm happy to help.
 

packrat

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Is there a website or anything to sign up to be a stem cell donor, like Be The Match is for bone marrow?
 

Resonance.Of.Life

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PinkJewel: Yes, I am an RN. In California, these kind of procedures have to be performed by an RN (I don't know about other states).
 

Rockdiamond

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PJ- I just saw this and I'm so sorry for what your family is going through.
Same to you Ame.

I lost my older sister when she was just 30 years old to lung cancer- back then there were so many less options
Sending prayers and best wishes.....
 

tyty333

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PJ - lots of positive thoughts for your family. I hope they can find a good match and your brother gets back
on the road to good health soon.

Tyty333
 

pinkjewel

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rainwood- it's amazing they could coordinate that across the world. It helps knowing that there is that resource available!

packrat- I'm not quite sure what the difference is between Be the Match and the organization that Ame posted for registry. I'm going to call the cancer transplant team on Monday and find out which registry is the one they use most- or if they use both.

ROL- I'm also an RN, but haven't practiced in many, many years. With the switch to EMR not sure I'll ever practice again :rolleyes:

David, thank you for your kind words. I'm sorry to hear about the loss of your sister to cancer at such a young age. Yes, they've made great strides in reducing mortality for so many cancers. I'm sorry they weren't there when your sister got cancer.

Tyty333- thank you. We will take all the positive thoughts we can get.
 

nyquestioner

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Pinkjewel, I'm sorry to hear your brother is going through this.
I think I can answer a few of the questions regarding the registry.
"Be the Match" is the national marrow donor program here in the United States. That is, they _are_ the registry. DKMS is a non-profit organization that sponsors drives and helps encourage donations; when you register through DKMS in the Unites States, they send on your information to "Be the Match," which relies on DKMS and other similar non-profits to help recruit donors and fund drives. So don't worry--no matter who you sign up through, it will all go to the same place!
When someone needs a match, first they will investigate relatives. If they are not matches, they will investigate the "Be the Match" (national marrow donor program) registry as well as the umbilical cord blood registry. If nothing great is still coming up, they can investigate international registries--as other people have mentioned, it's totally possible for your donor to come from Europe or Asia, or conversely, if you are on the registry, you may be asked to donate to, say, a young woman in France, or a child in Taiwan. It's really wonderful that this cooperation exists.
Hope this helps.
 

packrat

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ohhhhh-thanks for the clarification!
 

monarch64

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Pink Jewel: hugs to you and your brother--and positive thoughts for his treatment/recovery.
 

diamondseeker2006

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I am sorry I am behind checking Hangout, PJ, but I am really sad to hear about your brother. I will pray that there will be a perfect match for him!
 

pregcurious

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I'm sorry Pinkjewel.
 

ame

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packrat|1377297787|3508880 said:
Is there a website or anything to sign up to be a stem cell donor, like Be The Match is for bone marrow?
GetSwabbed.org or bethematch.org, just don't do both though, because they're both national registries and they don't want you coming up twice. Both are marrow AND stem cell. They both do marrow and stem cells into the same registry. The method for testing to get you in the registry is the swabbing. They do the initial match that way. Then you do blood testing for further matching if your initial screening matches you to someone.

If you are a match for marrow, that's surgical. If you're a match for stem cells that's via blood transfusions. Either way, the same registry I believe handles both.

The Be the Match registry is actually the official National Marrow Donors Program of the US. They coordinate all the donations, and interact all the lists in the country with other lists world wide. The DKMS is actually just a system of donation centers operating within the Be the Match Registry. They have different donation centers located through out the country. People can go into these centers to register as a donor, and in some cases even make the actual donation. There is one registry, when a patient needs a donor, their doctor logs into the list and can view all registered donors world wide to find the matches. But in order to increase the number of donors, there's lots of avenues to get on the list.
 

pinkjewel

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thanks NYQ and Ame for clarifying what the different organizations mean. Maybe it will prompt more people to become donors.

Monnie- hugs right back to you,too. It's hard to see any family member dealing with cancer. I'm sending lots of dust for a speedy recovery for your father after his surgery.

thank you DS and Pregcurious. PS is such a great forum
 

packrat

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Thanks for the further clarification, Ame! I'm glad I'm already set up then.
 

ame

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packrat|1377552008|3510147 said:
Thanks for the further clarification, Ame! I'm glad I'm already set up then.
Sure thing! :wavey:
 
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