Transplant Next

[kwaidz]

I just wanted to give a little update on my mom. She has completed 3 rounds of dacogen and has seen a decrease in her blasts. She has another BMB in a couple of weeks to see where she is. While this is encouraging news, the best news is that there were 2 "perfect" matches found for a transplant. The doctor is hopeful that instead of another round of decogen next month, she will have a BMT.

Thanks for all of your stories and insight. It helps - this board is a great resource.

I'd love some of your tips for preparing for transplant.
Thanks,
K

[Neil Cuadra]

Congratulations on finding a match. Two in fact! That's great news.

Will this be a non-myeloablative ("mini") transplant?

I have three tips about transplant preparations:

#1 is to stay healthy. I'm sure you already take every precaution for your mom's health, but it's worth mentioning. That includes keeping yourself healthy. This is no time to get the nasty flu going around.

#2 is to make an appointment with the transplant coordinator at the treatment center. He or she can give you a run-down of the transplant process, preparations, and what to expect afterwards. I forget if you said where your mom gets her treatment -- Baylor, UT Southwestern, MD Anderson Center, or somewhere else -- but each institution has people who know that center's procedures. They probably have printed information too.

#3 is to do just what you're been doing - talking to other patients and family members. Those of us who have gone before you will gladly share what we've learned. Depending on what's happening to you and your mom by April, consider attending the one-day patient conference April 20 in Houston.

[kwaidz]

Thanks for the response, Neil. She will have a Reduced intensity transplant and we just got the dates. She is getting a PSCT two days after her birthday, March 22.

Right now, she has completed a 4th round of dacogen and her blast levels are below 5%. So now she has RA instead of RAEB2 MDS. It has been a crazy journey to get her here. She has had one round of pneumonia (back in December) and her neutrophils dropped to 0. She stayed inside and away from people until her ANC improved. We are trying to keep her healthy and with a 1st grader and a baby in the house, it's a challenge.

From her calendar, she will have 4 days of busulfan and 2 of fludarabine followed by 2 days of rest prior to transplant. Is this pretty common? How sick will this make her? She is feeling pretty good right now, gets tired easily, but her blood counts are much better than where we started. I'm worried about the whole transplant process. Somebody tell me it will be fine and she'll do well.

[Neil Cuadra]

Originally Posted by kwaidz

Thanks for the response, Neil. She will have a Reduced intensity transplant and we just got the gates. She is getting a PSCT two days after her birthday, March 22.

Right now, she has completed a 4th round of dacogen and her blast levels are below 5%. So now she has RA instead of RAEB2 MDS. It has been a crazy journey to get her here. She has had one round of pneumonia (back in December) and her neutrophils dropped to 0. She stayed inside and away from people until her ANC improved. We are trying to keep her healthy and with a 1st grader and a baby in the house, it's a challenge.

From her calendar, she will have 4 days of busulfan and 2 of fludarabine followed by 2 days of rest prior to transplant. Is this pretty common? How sick will this make her? She is feeling pretty good right now, gets tired easily, but her blood counts are much better than where we started. I'm worried about the whole transplant process. Somebody tell me it will be fine and she'll do well.

K,

Chemo, rest, transplant. That's the established protocol.

Some transplants begin with radiation, some with busulfan or another drug. Fludarabine is another commonly used chemo drug. Your mom may have little or no reaction to these drugs (my wife had cyclophosphamide and had no trouble with it), but they might also make her feel pretty icky. The effects, whatever they are, should be temporary.

Those drugs are used for full transplants, so I'm not sure what makes it a reduced intensity transplant. Either they use smaller doses or it's about the lack of direct radiation.

With her blasts down, her ANC back up, and the attention you're giving to her care, I think you have plenty of reasons to feel confident. Transplants are serious treatment involving risks that none of us want to take, but they've become so common that hospitals have a lot of experience with them, and they've used that experience to learn how best to take care of their patients and minimize risks.

One more positive: there's nothing more likely to keep everyone's spirits up than children in the house!

[kwaidz]

So I checked mom into the hospital yesterday for her transplant. It's hard to believe she is finally here. She had her first day of busulfan today and so far, she's doing well but there is a long way to go.

Thanks for all the information I found here. This community has help us prepare for this transplant and the numerous doctors visits.
K

[Neil Cuadra]

K,

Please let us know how it goes for your mom. And for you too.

Best of luck!

[squirrellypoo]

Hi K.

I just wanted to pop in and say that I also had busulfan & fludarabine in my mini transplant and neither of those gave me any reaction whatsoever. It might as well have been saline! I also had campath in the mix, too, and that only gave me a little trouble.

Best of luck to your mom.

melissa

(Typing this after running 15 miles this morning!)

[Momhope]

how you doing? how is your Mom doing with transplant, please keep us update. I am in the samen situation my mom will have transplant mid April too.

my prayers are with you and mom..

[kwaidz]

Today was my mom's first day of rest, and her actual birthday. We've celebrated her 64th birthday today and will celebrate Friday on her new birthday. The hospital has been great. She is at Baylor and the nurses and doctors are very supportive. Her spirits are high and the chemo has not been bad. Her blood numbers are starting to drop but are still higher than when she was originally diagnosed.

Thanks for the support and kind words. I appreciate it. As for me - I'm stretched thin between my family, a full-time job, and the hospital, but somehow it all gets done.
K

[MDSPerth]

It's great to hear that some of you out there have had little reaction to your chemo drugs. Great to read some positives. Paul is admitted to hospital on 27 March to start the transplant process. I my memory tells me he will be on fludarabine for the first few days followed melphalam??

Not sure of the transplant date yet but will keep you updated.

My thoughts go out to all of you on this forum who are in the same situation - pretty scary hey!

Sandi