[goldmine848]

Stem cell storage if no ASCT planned immediately

by goldmine848 on Tue Oct 29, 2013 12:36 pm

As some may know from my earlier posts, I am now in the process of deciding whether to move ahead with an ASCT immediately. Today I learned about some issues that may have an impact on the decision.

The hospital where I am being treated will not, because of limited capacity, store stem cells unless a transplant is planned in the near future. I also learned that my insurance will not pay for storage except as part of the transplant process.

Finally, I have read that transplant centers will not transplant stem cells stored at another facility.

It is unclear to me how risky it would be to put off stem cell collection if I plan to wait on a transplant since there is at least some suggestion that whatever treatment I would be undergoing in months or years before I may later decide to proceed with a transplant will affect the number or viability of stem cells collected at that later date.

I will be asking questions at my Hopkins visit next week and of my treating docttor to try to flesh out some answers.

[Eric Hofacket]

Re: Stem cell storage if no ASCT planned immediately

by Eric Hofacket on Tue Oct 29, 2013 3:17 pm

This is something I really did not have to think much about. I am with Kaiser HMO and for their southern California patients they have them transplanted at City of Hope in Durante as part of a partnership they formed many years ago. There are about a half dozen Kaiser doctors who work part time at City of Hope and all the stem cell harvesting and storage is done at City of Hope. It appears they have a pretty sizable facility for this sort of thing. I have about 18 million cells stored there for future transplants which I have been told they will do up to two more if it makes sense. I have never had to think about storage issues. My stem cell transplant doctor told me they will store them indefinitely as long as he signs off on the annual paper work they send him to continue storage. If I ever lose my Kaiser insurance or switch providers I am sure the stem cells stored there would become an issue and I have no idea if or where they could be transferred to. It is interesting that hospitals will not use stem cells harvested at another facility. I wonder if this is because they do not want to use stem cells that they cannot assure were stored properly. Maybe they do not want to be liable for a transplant that goes bad because of improperly stored cells they had no control over. Seems once cells are harvested at a facility we may be locked into using that facility for any future transplants so I guess we need to choose carefully but at the time I had mine done I did not think about this at all. I have no concerns though about where my stem cells are stored.

[Christa's Mom]

Re: Stem cell storage if no ASCT planned immediately

by Christa's Mom on Tue Oct 29, 2013 6:05 pm

I had similar questions when EJ underwent his SCT two years ago. At the time, what I was able to figure out was that there was not much consistency between hospitals. Some would collect only if you were planning on doing a SCT transplant in the near term, some would collect and store, some would try to collect for two or more, some only collected for one, etc. Like most things myeloma, it made my head spin! The policy at the hospital EJ went to only collected for one transplant. If you harvested enough for two or more they would store them, but it was not their policy to try and collect and store additional stem cells. EJ only collected enough for the one transplant

Lyn

[gmarv54]

Re: Stem cell storage if no ASCT planned immediately

by gmarv54 on Wed Oct 30, 2013 9:07 am

I am headed down the same road you are on kind of, after I was diagnosed at UAMS with multiple myeloma.

When I was through with my first round of chemo and was on the road back, it was decided to collect my stem cells. I was in very bad shape and the collection went poorly. I collected only 5 million. Now a little over a year later I am near complete remission, so needless to say, I'm doing much better.

Anyway, now the doctors are talking about trying the collection again, which I want to do, but as well as I am doing on the VRD program, I don't see the need to rush into a transplant. UAMS seems to have no problem with storage of my stem cells so I guess we will see.

Funny how we are different but similar in ways.

Marv

[NStewart]

Re: Stem cell storage if no ASCT planned immediately

by NStewart on Wed Oct 30, 2013 5:31 pm

My understanding is that there are varying policies about collecting, saving and transferring stem cells at the various centers. Some will only collect if you are using them immediately. Some will store indefinitely. Some charge for storage while others don't charge. Some will transfer stored stem cells to other centers, but of course there is always the possibility that something can happen during the transfer.

Since you are being treated at Hopkins, I know that there policy is to collect and use the stem cells right away. I think that University of Maryland will collect and store cells. If you want to collect, but not use them right away, you may have to change where you are being treated.

Call all of the centers that do transplants in the Baltimore/DC area to find out what the policies are at the different centers.

Nancy in Phila

[goldmine848]

Re: Stem cell storage if no ASCT planned immediately

by goldmine848 on Wed Oct 30, 2013 9:29 pm

Actually I am being treated at Hershey Med Center in Pa; going to Hopkins for a second opinion. Hershey's policy is to collect only if doing a transplant but will store the leftover stem cells indefinitely in case needed for a second transplant. Do you know if Penn or any other Philly area centers will store without plans for an early transplant. Of course given the insurance situation I would have to pay the storage costs.

[coachhoke]

Re: Stem cell storage if no ASCT planned immediately

by coachhoke on Thu Oct 31, 2013 8:40 pm

My understanding about Hershey is that they will store the stem cells , initially, but most insurances, including Medicare won't pay for it unless you use them.