It has been a long time………

[Vance]

Hi everybody, it has been awhile since I posted.
To get all up to speed, my wife Ruby, dx’d 4/03 with MDS, transformed to AML 1/04, was never able to get a bone marrow donor.
Her doc in Columbus, Ohio suggested that we go to University Hospital in Cleveland to see about the possibility of a cord-blood transplant.
She recieved the stem cells on 11/12/04 and is doing well. She has been needing platelets and rbc on a semi-regular basis, but is improving.
She must travel to Cleveland 3 days a week for blood work and transfusions.
My prayers are with all of you wonderful people, there is life after MDS!.

[czaring]

Hi Vance – I’m new to these boards since you were here last. As I always do – I did a search for your Author name and went back to follow the history of your postings. I’m glad to hear your wife is doing well now. Did you see the posting yesterday about a fungal infection? If I remember correctly … the location is the lung … maybe you have some info to share all the same. Once again ….. it’s always nice to hear of things that are going well. Welcome back.

[Suzanne]

glad to hear from your and so glad Ruby is improving.

[B. Greene]

Vance I am wondering if you would share the specifics on the cord blood trans. We were unable to get a donor as well. Does this require the intensive chemo before the trans. like the rest does, her age etc. I’m not sure that anyone on the panel has had the cord blood so would surely appreciate hearing about the procedure. Thanks, Barbra

[Terri]

Vance it is wonderful to hear this good news, Continued prayers for Ruby

[shirlsgirl]

Hi Vance and Ruby!

So glad to hear that Ruby’s doing well!

I would love to hear more about the procedure with cord blood as my mom is meeting with a bone marrow transplant team next month.

Thanks for posting and welcome back! Jody

[sarah]

Vance, so glad to hear Ruby is doing well. I too am interested in procedure.
Sarah

[Davea]

Vance, I’m meeting with a transplant Dr. next week and am interested in hearing about the cord blood transplant as well. I was diagonosed with MDS back in May of 2003 and get transfusions every 4 weeks. So far they’ve only found 2 partical matches both being 5/6 matches. Maybe cord blood can be an alternative for me!

Dave A – 48 yrs. old.

[Naomi]

Hi Vance:
I was thinking about you the other day and wondering how Ruby was doing. I am glad that she is getting better and hope she continues to improve.
My daughter is having twins in April and wonder if the cord blood would be a possibility for me.
Keep us posted on Ruby’s getting better.
Naomi

[Vance]

Hi all, I am sorry I have been away again. Working out of town and hustling kids back and forth to basketball doesn’t leave me much time.
If I can remember correctly, we first went to Cleveland in July, to meet with a Dr. Lazarus at University Hospital. He made it clear from the start that cord blood is just as risky as bone marrow, but the risks of GVHD would be more likely. He felt that given Ruby’s age (40) and that she was first remission that she did have an opportunity to maybe beat this thing.
They did a multitude of tests and found a rather large donor supply for her in New York.
She entered the hospital in early Nov. She then recieved a relatively small amount of chemo, and total body irradiation. Her transplant is called a “mini” but, I cant remember the exact term.
She has been very nauseaus (sp?) just as when she had induction chemo in the spring of “04.
I have to say that I was surprised at the number of cord blood transplants taking place at Cleveland, she was on the unit and there must have been 12 or more doors with signs that said “Happy Transplant Day!” on them.
She is doing well, hospital visits cut back to 2-a-week now, with no I.V. port.
she is 72 days post transplant. Has lost an incredible amount of weight.
Cord blood seems to have been a wonderful option for Ruby. I hope I can help anyone, but my memory kind of fails me with some of the details.
God Bless You All

[Cherbear]

Hi Vance,
I haven’t posted that much but seeing yours regarding University Hospital really caught my eye. I have CMML and am being treated outpatient at University – Ireland Cancer Center in Cleveland. My son had AML and was a patient on Tower 6 quite a bit in 2003 for a stem cell transplant. So that floor was a second home for us that year. The staff was like family! Jason did not have the cord blood transplant, though. He had stem cells donated from his brother, a perfect match and had the “Happy Transplant Day” sign on his door, as well. Anyway, I just want to say that my son and I have received excellent care both inpatient and out at UH. Our doctor is Dr. Koc, who works with Dr. Lazarus, who also treated my son. They are so compassionate about their patients and I just have to sing their praises!!
I hope your wife is doing well – I go to the Ireland Cancer Center in Cleveland once a month right now.
Much Hope and Peace,
Cheryl

[Vance]

Hi Cheryl,
Yes the staff and doctors are very comapassionate at UH. I see I was wrong in assuming that the transplant signs were only for cord blood though.It is good to hear from someone else that is going there. My wife’s brother is living in Canton, so that is where she is staying while she is doing the outpatient visits. Our home is actually in Gallipolis, Ohio. It is a small town in southeastern Ohio. Very glad to hear from you and prayers go out to your family.

[Karenj]

Hi Vance,

I’m glad Ruby is doing so well. Does the cord blood have to be checked for 10/10 match? Did you say that the GVHD with cord blood could be higher than with BMT? I noticed in a previous post that your wife had a fungal infection. Did she have symptoms or was it discovered because of fevers? I wish Ruby the best and you both will be in my prayers. Thank you. Karen

[sarah]

Hi Vance, glad to hear Ruby is doing well. Hope she continues to get stronger and improve.
Take care,
Sarah

[Vance]

Karen, Ruby’s match was a 4/6, but there are plenty of back-up donors. I can’t remember how it was found, but the doctors still today are watching closely in case it comes back. She also has something called VRE, but it doesn’t seem to be as serious.
Her biggest hurdle now seems to be the nausea and vomiting and inability to eat.

[Author]

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