This subject is one that has me questioning the amount of cells I collected. JimNY has a lot of information but what has me a little concerned is what JoAnnB posted. She collected a large number, 10,000. That was great. Her concern was that she now does not have any cells in reserve for a second transplant if needed.
My thoughts are that she was very fortunate to have the extra 5000 to take care of the engraft a second time. What happens if you only have 5000 and they are all used for the first engraft. and it doesn't take?
What then?
Forums
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Stem cell collection - how much is enough?
Good day.
Thought I would chime in on this.
JimNY gave some good research references and very interesting input. My observations come from asking a lot of questions during my wife's ASCT at MSKCC in February of this year (note that JimNY's reference article was from Dr. Giralt, who is head of transplant there). At this center, the minimum that they will use is 4 million. So, interestingly, I did not know that this is higher than the "minimum", which, according to other standards, is lower, at 2 million, or less. Secondly, when starting to collect, their target is 10 million. So the idea is to always to have some for the "bank", at least 5 or 6 million.
I asked them dozens of questions with all types of different angles (probably like a 7 year old would do). They were very good about answering all my questions. If you get more than 4 million, but less then 10 million, they will make as diligent an effort as they could to get to 10, going all out to the 4th day. After 4 days they would probably stop. If they got 8, they probably be happy, if they got only 5 or 6, that would not be considered a "success". I was advised that, with there various techniques, they are able to keep on trying and, for the vast majority of patients, they get to 10.
In the case where you had a stellar collection, and had say 14 or 15 million collected, then the doctors will infuse more than 4 (say 6 or 7, for example). Although 4 was deemed adequate, the research has shown that your counts come back faster if a higher stem cell dose was infused. The duration of time at zero or very low white counts would be reduced. One of the main concerns with the procedure that remain and will never go away is getting an infection when the while counts are bottomed out. So, if this period is reduced from 3-5 days to 2-3 days, then that drives down the risk of the procedure to a minimum.
The research where they discuss the minimum you might get away with should be taken with a grain of salt. I would think that one would want to be well above the minimum, if at all possible.
Thought I would chime in on this.
JimNY gave some good research references and very interesting input. My observations come from asking a lot of questions during my wife's ASCT at MSKCC in February of this year (note that JimNY's reference article was from Dr. Giralt, who is head of transplant there). At this center, the minimum that they will use is 4 million. So, interestingly, I did not know that this is higher than the "minimum", which, according to other standards, is lower, at 2 million, or less. Secondly, when starting to collect, their target is 10 million. So the idea is to always to have some for the "bank", at least 5 or 6 million.
I asked them dozens of questions with all types of different angles (probably like a 7 year old would do). They were very good about answering all my questions. If you get more than 4 million, but less then 10 million, they will make as diligent an effort as they could to get to 10, going all out to the 4th day. After 4 days they would probably stop. If they got 8, they probably be happy, if they got only 5 or 6, that would not be considered a "success". I was advised that, with there various techniques, they are able to keep on trying and, for the vast majority of patients, they get to 10.
In the case where you had a stellar collection, and had say 14 or 15 million collected, then the doctors will infuse more than 4 (say 6 or 7, for example). Although 4 was deemed adequate, the research has shown that your counts come back faster if a higher stem cell dose was infused. The duration of time at zero or very low white counts would be reduced. One of the main concerns with the procedure that remain and will never go away is getting an infection when the while counts are bottomed out. So, if this period is reduced from 3-5 days to 2-3 days, then that drives down the risk of the procedure to a minimum.
The research where they discuss the minimum you might get away with should be taken with a grain of salt. I would think that one would want to be well above the minimum, if at all possible.
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JPC - Name: JPC
Re: Stem cell collection - how much is enough?
Good morning,
I want to start by thanking everyone for taking their time to share their experiences, knowledge and research references. I have learned a lot. I wish I would have had this information prior to starting the harvesting process. My transplant is scheduled the week of August 18th! And I only have 4.2 million cells harvested, which is pretty darn close to the minimum required.
I briefly brought up my collection count to my BMT specialist during the harvest process (while I was hooked up to the apheresis machine), and she said it is based on algorithms. My harvest lasted 2 days. We did not really go into further detail. Other than, me saying the other 2 million would be used if I didn't graft and she agreed.
Prior to the harvest, she had told me she doesn't intend on performing a tandem transplant as this is not standard practice any longer. If anything, we would look at CAR T-cell therapy in 2-3 years.
I wasn't aware of the other risk factors. Should I bring this up with her again? If so, any suggestions on questions I should ask her? I mentioned I don't have much time. I am not even sure if there is anything that can be done at this point.
I think the reason why my numbers were so low is because I had been on Revlimid since January 2015. I am currently off treatment and have been since July 14th. I am in good health, other than the multiple myeloma. For mobilization I received 780 mcg injections of Neupogen for 6 days, and began the apheresis process on the 5th day. I did not receive the high-dose chemo for the mobilization process.
To tell you the truth, I am very frightened of this whole process and will readily admit I am not even remotely as knowledgeable as my doctor. I really want to trust she knows what she is doing, but on the other hand this is my life and I need to take a stand when it is necessary.
Thank you again,
Rhonda
I want to start by thanking everyone for taking their time to share their experiences, knowledge and research references. I have learned a lot. I wish I would have had this information prior to starting the harvesting process. My transplant is scheduled the week of August 18th! And I only have 4.2 million cells harvested, which is pretty darn close to the minimum required.
I briefly brought up my collection count to my BMT specialist during the harvest process (while I was hooked up to the apheresis machine), and she said it is based on algorithms. My harvest lasted 2 days. We did not really go into further detail. Other than, me saying the other 2 million would be used if I didn't graft and she agreed.
Prior to the harvest, she had told me she doesn't intend on performing a tandem transplant as this is not standard practice any longer. If anything, we would look at CAR T-cell therapy in 2-3 years.
I wasn't aware of the other risk factors. Should I bring this up with her again? If so, any suggestions on questions I should ask her? I mentioned I don't have much time. I am not even sure if there is anything that can be done at this point.
I think the reason why my numbers were so low is because I had been on Revlimid since January 2015. I am currently off treatment and have been since July 14th. I am in good health, other than the multiple myeloma. For mobilization I received 780 mcg injections of Neupogen for 6 days, and began the apheresis process on the 5th day. I did not receive the high-dose chemo for the mobilization process.
To tell you the truth, I am very frightened of this whole process and will readily admit I am not even remotely as knowledgeable as my doctor. I really want to trust she knows what she is doing, but on the other hand this is my life and I need to take a stand when it is necessary.
Thank you again,
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Stem cell collection - how much is enough?
Rhonda,
Just had a question; You had collected 4.2 million cells in two days. You mentioned that you would have 2 million more if you didn't graft. Are you getting 2.2 million with the first transplant, leaving 2 million?
Just curious, did your doctor or team mention a range for collection like mine did, with 3 being minimum to 5 being basically considered a very good collection?
I am with you on this thinking that a call to your transplant coordinator or doctor would possibly ease your mind. My insurance is contracted with a hospital (USC) that is about 200 miles from my home so any questions have to be over the phone. If you can, it would be best to sit down face to face with your doc.
I also had a two-day collection getting a little over 5 million cells. My specalist and transplant team said they look for 3 to 5 milion cells, with 5 million being very good. There are so many numbers being mentioned at different locations. It has me a little worried also for my upcoming transplant in January. Best of luck and please keep us posted as to what your doctor says.
Castaway
Just had a question; You had collected 4.2 million cells in two days. You mentioned that you would have 2 million more if you didn't graft. Are you getting 2.2 million with the first transplant, leaving 2 million?
Just curious, did your doctor or team mention a range for collection like mine did, with 3 being minimum to 5 being basically considered a very good collection?
I am with you on this thinking that a call to your transplant coordinator or doctor would possibly ease your mind. My insurance is contracted with a hospital (USC) that is about 200 miles from my home so any questions have to be over the phone. If you can, it would be best to sit down face to face with your doc.
I also had a two-day collection getting a little over 5 million cells. My specalist and transplant team said they look for 3 to 5 milion cells, with 5 million being very good. There are so many numbers being mentioned at different locations. It has me a little worried also for my upcoming transplant in January. Best of luck and please keep us posted as to what your doctor says.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Stem cell collection - how much is enough?
Rhonda - thanks for posing your questions and good luck with your transplant.
Thanks JimNY for those references. My husband had his stem cell harvest last October 2014 and they collected 9 million in three hours and told my husband that was sufficient for two stem cell transplants. He is now getting ready for that stem cell transplant at MD Anderson in Houston in two weeks.
Thanks JimNY for those references. My husband had his stem cell harvest last October 2014 and they collected 9 million in three hours and told my husband that was sufficient for two stem cell transplants. He is now getting ready for that stem cell transplant at MD Anderson in Houston in two weeks.
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PattyB - Name: PattyB
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 64
Re: Stem cell collection - how much is enough?
Hi Castaway
I am not sure how the cells will be divided. The doctor wasn't specific about it, probably 50/50. I didn't even know the goal was 4 mil until the day of the procedure. I was so wrapped up in my chromosome abnormalities, I didn't ask. I wish there was a set list of questions we could review prior to making such a huge decision. I did sent the doctor an e-mail yesterday. Hopefully she will respond early next week.
I live 350 miles from Stanford (which is where my transplant will take place). I know they wouldn't perform the procedure if it wasn't safe, or at least to my best interest. I do know there are risks, I look forward to hearing from her, to get her reasoning.
PattyB - Thank you. I wish your husband the best too. It is crazy how the numbers fluctuate so much.
I am not sure how the cells will be divided. The doctor wasn't specific about it, probably 50/50. I didn't even know the goal was 4 mil until the day of the procedure. I was so wrapped up in my chromosome abnormalities, I didn't ask. I wish there was a set list of questions we could review prior to making such a huge decision. I did sent the doctor an e-mail yesterday. Hopefully she will respond early next week.
I live 350 miles from Stanford (which is where my transplant will take place). I know they wouldn't perform the procedure if it wasn't safe, or at least to my best interest. I do know there are risks, I look forward to hearing from her, to get her reasoning.
PattyB - Thank you. I wish your husband the best too. It is crazy how the numbers fluctuate so much.
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Stem cell collection - how much is enough?
JPC - Thanks for your posting earlier in this thread. There was a lot of useful information in it.
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JimNY
Re: Stem cell collection - how much is enough?
Hi Rhonda,
Like you, I was on Revlimid before stem cell collection. Because of this, I think, they collected only 4 million cells, which was considered as the minimum in that hospital. In 2013, I had my ASCT and they used 2 million cells. My recovery was quite slow, but it did happen just fine without infections. Most importantly, I am still in remission, and I have another 2 million cells stored for another ASCT if needed.
So it does work with only 2 million cells, and that is why it is considered as the minimum.
Best of luck!
Like you, I was on Revlimid before stem cell collection. Because of this, I think, they collected only 4 million cells, which was considered as the minimum in that hospital. In 2013, I had my ASCT and they used 2 million cells. My recovery was quite slow, but it did happen just fine without infections. Most importantly, I am still in remission, and I have another 2 million cells stored for another ASCT if needed.
So it does work with only 2 million cells, and that is why it is considered as the minimum.
Best of luck!
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finn
Re: Stem cell collection - how much is enough?
Rhonda, thank you for the reply.
I met a complete response back in December 2014 with Velcade and dexamethasone. On a maintenance since collection in March 2015. I figured that, since I was taken off of Revlimid due to a rash issue months before collection, I would have collected more. I shouldn't complain – at least I have the 5 million waiting for my transplant.
I have heard really good things about Stanford. My oncologist gave me a few suggestions for transplant and it was Stanford and USC. Insurance dictates that I go to USC.
350 miles from the hospital. Mine is 200. It does make things a little tough. Just some food for thought: USC gave me the American Cancer society information. I called them, and they can set up housing for you after your transplant due to the distance you have to travel. Depending on the type of accommodations, they could pay 100%. My transplant team wants me to stay close to the hospital, checking my labs before letting me come home after the transplant.
Best of luck,
Castaway
I met a complete response back in December 2014 with Velcade and dexamethasone. On a maintenance since collection in March 2015. I figured that, since I was taken off of Revlimid due to a rash issue months before collection, I would have collected more. I shouldn't complain – at least I have the 5 million waiting for my transplant.
I have heard really good things about Stanford. My oncologist gave me a few suggestions for transplant and it was Stanford and USC. Insurance dictates that I go to USC.
350 miles from the hospital. Mine is 200. It does make things a little tough. Just some food for thought: USC gave me the American Cancer society information. I called them, and they can set up housing for you after your transplant due to the distance you have to travel. Depending on the type of accommodations, they could pay 100%. My transplant team wants me to stay close to the hospital, checking my labs before letting me come home after the transplant.
Best of luck,
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Stem cell collection - how much is enough?
Hi Castaway
Thank you for the information regarding the Cancer Society, if you still have the telephone number and what to share it, I will call them. I too have to stay within a safe zone for at least 3 weeks to a month. We currently have reservations but we are looking at $4,300.00 for a month stay. My insurance dictates where I go to for treatment too, but I am thankful I have insurance.
Hi Finn,thank you for sharing your positive experience. It is always comforting to hear good news. I wish you many more years of remission.
Thank you for the information regarding the Cancer Society, if you still have the telephone number and what to share it, I will call them. I too have to stay within a safe zone for at least 3 weeks to a month. We currently have reservations but we are looking at $4,300.00 for a month stay. My insurance dictates where I go to for treatment too, but I am thankful I have insurance.
Hi Finn,thank you for sharing your positive experience. It is always comforting to hear good news. I wish you many more years of remission.
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
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