Another Donor Found!

[traceyn11]

My stem cell transplant doctor's office called us on Thursday to come in today for an appt. It turns out they have another 9/10 match, but this one is a 56 yo female. We were concerned because of the age (she is only a year younger than me) since they had already told us they prefer male donors younger than 40. But the dr. seemed to be quite certain this would be a very good, but not great match. Anyone have experience with an older donor?

Tentatively, I start the testing Aug. 24th, and start the chemo Sept 14th, with the transplant on the 19th. They have to check dates with the donor first.

I still am feeling good, but they took me off the Augmentin today because my Liver Panel numbers were high. Hopefully that will take care of the IBS I have been having too. It doesn't look like I will be going back to work before the transplant

[rar]

I received a transplant from my baby sister who was 66 at the time. That was a year+ ago. There were speed bumps in the road since then but I am still alive and kicking. She was a 10/10 match. A 9/10 is still pretty good. If you trust your doctor go with his advice.

Ray

[maggiemag]

Good news, Tracey, and also interesting from Ray's perspective. I went to Ohio State 2 weeks ago for another opinion as my heme/onc wants me to go on Vidaza, and I feel it's too soon, and need to W and W some more. At that time the physician brought up transplant potential down the road. I am 67 now but have an identical twin sister, and she said they would not use her due to age, but perked up when I mentioned my 57 yo brother. (Ohio State transplants up to 75 with reduced intensity). So your donor sounds good and if your team okays them then I would go with it! Trust your team, and may it all go as smoothly as possible.
Mags

[bailie]

Mags,
Be careful not to "watch and wait" too long. Without a doubt the transplant will be more successful if you go into it at the optimum/healthy time. I was put on Vidaza (eight cycles) as soon as I was diagnosed. Then when blood counts were all in the normal range I had the transplant. It went as well as could be expected.

[traceyn11]

Thanks for the personal experience Ray and the advice Bailie and Maggie. I feel better about it now. Bailie - you are right about it being when I am the healthiest. Even though my counts still are not normal, they are the highest they have been since before my first round of Vidaza and I feel the best I have in months.

I see my hematologist tomorrow so I will be interested in what he has to say about it.

[PaulS]

Hi Tracey - glad you are moving a long and feeling well. Who says 56 is old?

They were going to use my brother (64) for the transplant until some health issues showed up in his pre transplant testing that would have delayed the transplant. There may be other issues associated with a female donor - but hopefully your hematologist or transplant doctor will have the answers for you.

I spoke with two very good transplant doctors and the each used different "special sauces" in doing their transplants. Doesn't seem like there is necessarily one way to do it - important thing is to have an experienced team that you are confident in.

Are they planning to do any kind of t cell depletion or campath for your transplant to help prevent GVHD?
Did you discuss a haplochord transplant (half match like a child + umbilical chord stem cells)? I'm told a tougher process but good long term results if you get through it.

I was considering a haplochord but they found a 10/10 MUD for me which they preferred over chord - and I'm scheduled to go into the hospital on 9/4 for 9/10 transplant - they found some significant heart problems -probably associated to some extent with the MDS - with me so they are not doing fully myloablative conditioning - and no t-cell depletion. The donor agreed to donate marrow - not peripheral blood - I'm told that lowers the chance of GVHD - although not as much as T Cell depletion which I was hoping to do. I'm about to start a drug to lower my Iron that will hopefully help my heart - its a new version of Exjade.... warnings on the label are a bit scary...

Anyway I hope the donor works out for you and we both have a smooth ride - I'm hoping to make it to California next summer - so maybe we can have a cup of coffee to celebrate our recoveries.

All the best,
Paul

[traceyn11]

I was wondering how you were doing since we both seem to be on the same track. Glad to hear they were able to find a 10/10 MUD for you since your brother couldn't donate. Sorry to hear about the heart problems, but it's good they know about it going in. I will be saying some prayers for you. I know you will do great - you have such a positive attitude!

Not sure about the t cell depletion or campath, I am going to write those down so I can ask about it. I see the hematologist this morning, maybe he will know. Yeah, the main reason I was concerned about the donor's age was the potential health problems, but she could be one of those incredibly healthy people who jog 5 miles a day! We haven't discussed haplo or chord blood, but when I called the MUD search contact last week, she said they had 2 donors they were requesting more info on. So if this one doesn't work out, hopefully they have another. I am going to call today to find out. My main concern right now is the Aspergillus Pneumonia that I may still have. The stem cell dr. is aware of it and said they would monitor it, but it can be fatal.

I would love to have a cup of coffee with you when you make it out to Calif. next year to celebrate our recoveries!

All the best to you too!
Tracey

[PaulS]

What's the pneumonia - can they treat it before the transplant? I used to be really healthy before the MDS - at least so I thought - it seems to generally slowly weaken you and makes you more vulnerable to other ailments - really tired of the whole thing. Hopefully the pneumonia won't hold you back and your health will generally improve after the transplant.

I try to stay positive - but rest assured I have some pretty dark moments. Its great that there are other potential donors out there - they didn't find any matches for me in just searching the registry - they had donors go in for further testing who they could not rule out as matches - but hadn't been tested sufficiently to be able to determine they were a match - it seemed very unlikely at the time that we'd find a match - hence the focus on a chord transplant. We were very surprised they found a match. The stem cell doctor described it like winning the lottery .

Let me know how it goes with your getting a donor and with your hematologist.

Best,
p

[traceyn11]

Hi Paul,
The pneumonia is called Aspergillus, apparently you get from inhaling mold spores. Most people don't have problems when they inhale them, but of course, we are not most people. They have been treating it for almost a month now, so I am hoping it is gone, but it can come back too. It can be fatal, which is what I am worried about. My hematologist didn't have much to say about it, other than saying I should go through with the stem cell transplant and that I will be in good hands.

My transplant is tentatively scheduled for 9/23 pending donor confirmation. I start Fludarabine on 9/14 as an outpatient for 5 days.

[PaulS]

Sounds scary - although I'm sure the transplant team is used to dealing with infections - can they tell if the pneumonia is gone? Are you doing a non-myloablative transplant? If so, forget what I asked about t cell depletion - I don't think they do it if its not a fully ablative conditioning regime - and perhaps safer with the potential infection. Either way I'm sure they know what they are doing.

Interesting you are doing the chemo as an out patient - that was not offered as an option to me - my chemo starts in the hospital - everyone does it a bit differently, hopefully we are both in good hands.

Not to gloat - but I guess I'll be cured about a week before you - I'll let you know how it feels.

Good luck with it all -

P.

[traceyn11]

Hi Paul,
They have to do a CT Scan to see if it is still there. Not sure if it is non-myloablative transplant. I think I will find all that out at the meeting I have with the transplant team on 9/9.

Actually I emailed my doctor about my concerns doing the chemo as an outpatient. He agreed that I need to have it done in the hospital given my previous bad luck with chemo. So I am happy about that. I wish I could feel more positive about this, but I am still scared.

Your transplant date is coming up soon! Yes, please let me know how it feels!

Good luck to you too!

[PaulS]

Hi Tracey,

Glad you'll be having the chemo in the hospital - one less thing to worry about and you might as well get used to the environs - at least that's how I feel.

MDS and transplant especially is very scary - but you can still be scared and positive - you are a badass mother! You will do fine and keep focussing on how great you'll feel when you're cured.

My pre-transplant meeting is the 2nd - and then off I go - I'll keep you posted.

Best,
Paul

[traceyn11]

Originally Posted by PaulS

Hi Tracey,

Glad you'll be having the chemo in the hospital - one less thing to worry about and you might as well get used to the environs - at least that's how I feel.

MDS and transplant especially is very scary - but you can still be scared and positive - you are a badass mother! You will do fine and keep focussing on how great you'll feel when you're cured.

My pre-transplant meeting is the 2nd - and then off I go - I'll keep you posted.

Best,
Paul

Thanks for making me laugh this morning Paul! You are right - I am a badass mother!

Yes, please keep us posted!