Karen
 

Your news is great. I am very happy for you. Your question is one that I would have asked also and glad you gave us the information. I wish you all the best. I will pray for your success.

Karen
 

What great news! Very happy for you and I know you are having alot of emotions right now. I am praying for you both and wishing you all the best.

Great news! Good luck with everything. Thinking of you.
Laura

Hey Karen!

This is the crazy thing, right? You get better and THEN they want to transplant you.

But it makes sense, even though it makes no sense, and I am happy for you.

Good luck!

Greg

Transplant blog
 

Thanks again, everyone! I've decided to create my own WordPress blog instead of using Caring Bridge. Here's the address: http://www.mausmarrow.com/

"Mausi" is what my husband calls me...that's where the name of my business and my other domains comes from.

Clinical trial NA_0017193
 

I met with the doctor yesterday to sign consents for a multi-institutional Phase II clinical trial, NA_00017193, that I’m participating in at Johns Hopkins. Two other institutions, M.D. Anderson Cancer Center in Houston and Fred Hutchinson Cancer Research Center in Seattle. The full scoop is posted on my blog, http://www.mausmarrow.com/.

Big or Little?
 

Hey Karen!

I haven't read enough about transplant prep specifics to be able to tell from the trial description: Is this a full myeloablative transplant or a reduced intensity transplant? I'm thinking the former, but wanted to check.

The trial itself sounds great! I look forward to making use of the knowledge you are creating down the road when it's time for me to go the SCT route.

I have Googled the distance and we're going to be 40 miles apart, give or take, when you are starting your treatment and I am ending mine. I have studied up on the question and can report that my super Campath-enhanced positive vibes have a range of at least 80 miles, so I will be beaming serious positivity in your direction.

My vegan daughter always wants tofu turkey for Thanksgiving, but you are brave to try boo-flu instead. I know it will go well for you.

Take care, and keep us posted!

Greg

full myeloablative
 

Hi Greg -

I'm getting the heavy duty full myeloablative treatment because of my youthful age (smiles), my good health (aside from the cancer), and my particularly nasty MDS. Even with full, the docs are very concerned about the potential for relapse but have other plans in mind should that occur.

As for tofu turkey vs. boo-flu, I hate to say it but I'm not sure which is worse. My feeling is if you aren't going to eat meat, don't bother eating the pretend stuff. If meat's something you crave that much, then you probably need the real thing. Can you imagine the first Thanksgiving vegan style? Ugh. Please...I don't mean to offend any vegans out there...these are just my personal opinions not intended to influence or corrupt!

Thank you for the abundance of Campath-charged positive energy. I surely will be able to use all I can get!

Karen

Karen,

My transplant doc is a Wake Forest, which does almost exclusively reduced-intensity transplants. But she trained at Stanford and they take a very aggressive approach. "The clone is stubborn," she told me once.

In fact, though they were looking at a reduced intensity version for me, she confided that, were she an MDS patient, she'd be inclined to go for the full deal, assuming appropriate age, health, etc.

I'd say you are in very good hands.

My observation on veganism is that some vegans do wind up eating a lot of processed foods -- often more than the typical ovo-lacto vegetarian, who can slack their "meat-hunger" and need for protein and fat with eggs and cheese. But that's my daughter's bag. My Thanksgiving dinner (a day or two late) will consist of a nice ten-pound roast chicken that I raised myself (and dispatched myself!).

Have fun packing!

Greg

Hey, Karen, just caught up a little with you on your great blog. It sounds like you're in good hands. (And I'm with you re tofu turkey btw. But to each their own...)

Happy Thanksgiving, it is such wonderful news you have a match and a schedule.

It is happening right now...
 

We started the bmt at 1:04 a.m., 1342 mL bag. I learned my donor is from Germany. I tolerated the chemo well other than some nausea past couple of days. All is proceeding, still scary and exciting.

Very exciting, Karen!! (Though I hate to tell you, but now comes the boring part while you wait for engraftment...)

Do you know if your donor is a man or woman? My husband was just commenting the other day on how much warmer I am now than even before I got sick. We both think it's down to having "man blood" in me now. :)

SCT
 

Hi Karen,
Very good that you tolerated the chemo so well - now we hope the engraftment will occur without complications!
Kind regards
Birgitta-A

All the best Karen & good luck!

Melissa-I am SO MUCH warmer now too!!!! I was told it's because the blood is thicker (due to higher HGB). Before I was freezing all the time and now I am always hot!

Laura

Yay! You had a lady donor though, didn't you? There goes my theory! :)

When I had low Hb, that winter my fingers and toes would go numb and turn yellow (looking exactly like cadavers). The only thing to bring them back to life was several minutes of massage from my husband - warmth did nothing!

Yes, I had a female!
Laura

I don't know if my donor is male or female but I hope I don't get any hotter than I am already, lol. I'm generally roasting.

Going home!
 

I'm at day+58 and going home tomorrow! Would've been today except our power is out at home after the snow storm last night. More details on the blog...link in my sig.

Going home after SCT
 

Hi Karen,
Wonderful that you have managed so well with (almost) everything during the SCT :)!!!
Kind regards
Birgitta-A

Congrats!!!! Getting home makes such a big difference in how you feel and helps in the recovery also.

Stay warm.

well done, Karen! That's great news. :)

Karen
 

Fantastic - very happy for you - way to go!!:)

Bmb results
 

Thanks everyone! I got my results from last week's bone marrow biopsy, and there is no sign of MDS. Cytogenetics are normal and my cells are still 100% donor.

Praise the Lord!