[pookey12]

Any Stony Brook Univ. stem cell transplant experiences?

by pookey12 on Sat Nov 07, 2015 4:11 pm

Hi everyone,

My brother-in-law lives in upstate New York. He was diagnosed in September with multiple myeloma. He had one round of radiation and is on his second round of chemo. He is receiving this in Potsdam, New York. He has 2 more rounds of chemo scheduled. Anticipating a stem cell transplant following this.

We are trying to figure out how to do this as it is a long distance to Roswell in Buffalo (5 hours away from their home).

I live near Stony Brook University on Long Island and they do have a transplant program.

Also, another option is Sloan.

Anyone know anything about having the stem cell transplant at Stony Brook?

It may be easier for us to all be helpful to my brother-in-law and sister if the care is good . We want what is best for him.

Thank You,
Jeanette

[JPC]

Re: Any Stony Brook Univ. stem cell transplant experiences?

by JPC on Sat Nov 07, 2015 5:34 pm

Hello Pookey:

I have not heard about SB's program. However, one quick question you could ask is: how many stem cell transplants does the center do in a year. If they do more, they have more of a "critical mass" to deal with issues that might come out of the woodwork. If they have less, then they may be fine with basic issues, but may be challenged with the more complicated issues. For reference, in the NYC area, these are numbers that I have heard recently. MSKCC does the most at about 450+ a year, and NYP does about half that. I do not know how many Roswell Park does, but they are a major center, for sure. I do not know how many Stony Brook does, I have not heard, but you should ask. I am guessing that they have a lower number. Hope this helps.

[pookey12]

Re: Any Stony Brook Univ. stem cell transplant experiences?

by pookey12 on Sun Nov 08, 2015 9:22 am

Thank you for the great information. I am thinking that the best option will be Sloan but will look into this further. Trying to have a plan that allows us to work together. I would like to be available to help in the process. There is so much to learn and I feel overwhelmed with knowing what is best?

[Cheryl G]

Re: Any Stony Brook Univ. stem cell transplant experiences?

by Cheryl G on Sun Nov 08, 2015 6:50 pm

Hi Jeannette,

Sorry to hear about your brother-in-law's myeloma diagnosis.

A member of the forum did an amazing job documenting her mother's stem cell transplant at Roswell Park about a year ago. She posted here in the forum just about every day of the transplant. You can read the postings here:

"My Mom's Inpatient Stem Cell Transplant at Roswell Park" (started Dec 11, 2014)

Her mother's transplant was inpatient and dragged out longer, I think, than most. But there's a lot of useful information in her postings, including information about where Allison (Leealli) stayed in the Buffalo area during the transplant.

There are other transplant "journals" that you can find linked to near the end of this posting, "Useful links to existing forum discussions". Also, forum member RadiantTiger is documenting her currently ongoing transplant here:

"Inpatient autologous stem cell transplant at UC Davis" (started Oct 22, 2015)

Good luck!