SCT preparation. Thoughts on Items To Take

[crpa]

Hi Everyone:
I am mostly a watcher and have been reading everyone's transplant's progress, they are very incouraging to say the least.


I am writing to see if anyone has ideas for your favorite or important items to take while in the hospital for SCT.
My husband will be going in for a mini transplant in August so I am trying to pack up what we need.
We will have to stay away from home too for the following 60 days at least to be by the hospital, that will be hard but it is for the best.
Unfortunately we are too far for the time limit of 1 hours within the hospital in case of infection.

I would appreciate any help/ ideas.
Thanks Christine


Husband stats:
Diagonosed: 2/2010
mds to aml, Treatment:vidaza , then high chemo in hospital for 40 days, dacogen, down to less than 5 % blast in last BMB, now onto SCT.

[Debbie W]

No ideas, but you must be so happy with this encouraging news. My husband has followed a similar path, initial diagnosis of 15% blasts, but after 2 cycles of Dacogen his blasts were 20%. He will now be admitted on Monday for induction therapy and hopefully transplant. If you do not mind my asking, did they give him the Dacogen after the induction therapy? Any details you want to share would be appreciated.

Best of luck with the transplant,

Debbie

[crpa]

Hi Debbie:

Thanks for the reply.
My husband had the Dacogen last month after the Vidaza treatment made his liver edzmes go to a high level. The Dacogen did the same with liver counts up after just one week of a 3 day treatment so the doctor ordered the treatment stopped again, which was after the induction treatment of 2 types of chemo in hospital for a stay of about 41 days until his blood counts came back to acceptable for leaving.
The Doctors think it is in his best interest to get him back in before his counts get back up and the aml comes back.
My understanding is that the patient has to be at a least 5 % blast count to do the transplant.
The induction chemo did bring my husband's count down , he started out at 30 % blast and now is 2 %.

I hope this helps and good luck with your Husband's treatment.
As the nurses and doctors keep saying, Everyone is different, my hubby hate that saying, but I am learning just how true it can be.
This is a weird disease, thank God for excellent Doctors and Hospitals.

Kindest Regards, Christine, aml wife and caregiver

[Neil Cuadra]

Originally Posted by crpa

I am writing to see if anyone has ideas for your favorite or important items to take while in the hospital for SCT.
My husband will be going in for a mini transplant in August so I am trying to pack up what we need.

Christine,

The first page of the Countdown to BMT! thread has some suggestions about what to take with you.

[Debbie W]

Sounds as if it will be a similar course. Daunorubicin and Ara-C is what they are saying, did the induction therapy bring his counts down from 30% to 2%. I just read through the suggested items and have included some of them for when we leave next week. Our doc says the same thing, first fight the disease with the induction therapy (under 5%) and then then kill off the balance right before transplant.

It does help and thanks for the reply, please let us know how your husband is doing and best of luck.

Debbie

[squirrellypoo]

Lots of toothpaste! They have you brushing your teeth and using mouthwashes like 6 times a day so you go through a tube really quickly.

...and as counterintuitive as it might seem, nice shampoo. I didn't lose my hair until after I was discharged and a nice, hot shower with my favourite chocolate shampoo was easily the highlight of most days.

[crpa]

Thanks everyone for you suggestions, I will definitely make a note.
Also, thanks for the link to the bmt countdown, I could not find that .

My husband's counts did come down from 30 % to now 2 %, but of course the Doctors are doing sct asap because my husband's first mds to aml occured very fast.

Squirrelpoo, I will pack up the toothpaste, my husband has his favorites too.

The hair thing has been hard, my husband's hair has always been his trademark, and he still has a little on top and it is coming back , but of course to be lost again with the new chemo.
THANKS again and hope all of you the best.
Regards, Christine

[Debbie W]

Wishing you the best for the coming month, we're on week one of the induction therapy and just hoping that this works as well as did with your husband.

Wishing you well,

Debbie

[Ruth Cuadra]

Hi, Christine.

I'll add one tip about toothpaste based on my experience. Mint toothpaste, which most of us use for the "freshness" factor can be very irritating when your mouth is sore, which happens during transplant when your white count goes to zero. Think about a kid's toothpaste that is fruit or bubble-gum flavored. I continue to have a sensitive mouth even 11+ years after my transplant and use Tim's of Maine Apricot Flavor. I wish I'd known about it earlier.

Good luck to you and your husband!

Ruth

[Debbie W]

If you have time, please let us know how things are going with the transplant.

Best wishes to both of you,

Debbie

[crpa]

Hi Everyone:
My husband had a sct MUD mini on 8-17-10 and is doing well, he is 7 days out now and is a bit tired and his counts are down, now we wait until they come back up
Does anyone have any ideas on how long it takes for engraftment?, the DRS say from 10 days to 1 month.
Of course they says EVERYONE IS DIFFERENT.
Debbie I hope your husband does well and I know it is the waiting for the test results that is difficult.
Everyone hang in there and Hope & Prayers for the best.
Regards, Christine

[Debbie W]

Thanks for the update and glad to hear things are going well. As usual no help on your question as we are not "there" yet. You might also want to check the transplant section at the Leukemia/Lymphoma site in your spare time for any answers.
http://community.lls.org/index.jspa

Thanks for the kind words, follow up BMB is on Tuesday, hopefully they can give us some preliminary results by the end of the week.

Hopefully your husband will continue to get stronger and that the bumps along the way will be minor Seem to use the words hope and hopefully quite a bit these days.

Best wishes,
Debbie

[squirrellypoo]

Hi Christine.

That's great he's doing so well! Waiting for engraftment is really boring after all the chemo, where stuff changes every day!

I had to look back through my own thread to see, but I first had my neutrophils go up (a sign of engraftment) on Day +11. At that point they gave me growth factor injections to artificially raise my counts so I could be safely discharged (but don't get too excited at the super high numbers, because they come right back down again when you stop the injections!!).

melissa

[Debbie W]

Hopefully all is going well and that your husband is looking forward to being released shortly - give an update if you can.

All the best to you and your husband,

Debbie