SGroesbeck,
Man that is long name can I call you SG? Where are you having the SCT? You said Mott Childrens Hospital. Is that in Fl? I am very excited for you. Do you have a camera on your laptop? If you do install Skype. That way you can video talk to your family when they aren't there. My sister-in-law suggested it in Wisconsin. It is totaly free as long as you don't talk over phone.
I also have the deletion 5q and added in there extra genes that aren't totally unneccessary. I also need a sct. My sister isn't a match. So I have to depend on the bone marrow registery. We are all pulling for you.
Please keep us posted how it is going. I especially want to know cause I am hoping I will be in your situation third or fourth month in 2012.
Happy New Year Cat

Congratulation again yippy.....

Becky Jean: Sorry that you ended up in the hospital, but we all know that happens. I feel my hgb is dropping, feeling good tho.
CatJohson: This is not a fun road to follow, I will thy to help you out.
The hospital I am going to is the Universary of Michigan in Ann Arbor.
My e mail address is : sgroes1308@comcast.net
I can then send you my phone number.
HAPPY NEW YEAR TO EVERYONE!
Anyone heard from Mike?

I meant to say that I have extra genes that are totaly unnecessary. I really appreciate the experience advice. I go in on the Jan 11 to have 6 diferent test run to see if I am healthy enough for the transplant. This is per my insurance request. Did you run into anything like this? I am 62 and I think my insurance company might think I am to old. My doctor said I am very healthy and would put me in the middle 50's range. The only thing I have wrong is this.... I am scared it won't happen. My diagnoses is extremely poor without it.
I am very happy for you. From what I know it is a hard road.
Happy thoughts and good wishes Cat

Hello, sorry I've been gone so long. We started out December with Mom in the hospital with pneumonia for a week. She beat it and enjoyed a few more weeks with a limo ride to see Christmas lights and made it to church on Christmas eve. In early December our Dr. told us the dreaded news -- the chemo didn't work and there was nothing more he could do. Mom agreed to stick around until the holidays were over. Mom has fought a good battle, but she didn't get her miracle. My favorite aunt got her wings on Dec. 17 and tonight we are here at Mom's waiting for her to get her wings. Mom had a full life at 89 and I'm so happy we did all the things we did for her this last year. We had a big Mother's day, a big 89th bday party, and finally her 15 min. of fame on the B-24 bomber. Mom has had 23 transfusions of blood and 23 transfusions of platelets. As the Dr. explained, they just weren't working anymore. Her bucket was leaking. Mom had one more transfusion on Thursday night and then we met with the hospice nurse. Bless her heart, her count was 4.7 and 2 platelets, even after all those transfusions. So, Mom's journey is coming to an end and I'm here by her side.

I'm happy to see some newcomers here, and I'm so happy for Sandra that you're going to get your BMT. Sharon, I'm glad your cruise was fun, too bad about the darn video. I too wonder and worry about Mike. I know he's here in the Garland area of Texas. Has anyone tried emailing him? He was the first one to welcome me to this board many months ago.

Mom tells me not to cry, she's going to a better place to be with her sister. I hope they find a cure for this awful disease that has taken my vibrant, energizer bunny mother. And, I hope you all get better. Happy New Year! Cindi

Dearest Cindi, I'm so sorry about your Mom, it breaks my heart to
read the latest news. My fella asked me why the tears but I can't seem to talk. You and your family are in my prayers.

I do hope those who can find a match will get their transplants as it
seems to be the only way to beat this disease. My doctor won't talk about a transplant, but I'll be 76 in a few days and I know I may not be a candidate. But I've accepted that.

It has been crazy here the past few days, while at my grandson's I had a coughing spell, something went down wrong, I know we all experience that, well it seems I have some nerve damage in the back of my head and the pain was severe to the extent that I went to the ER in Alabama. I stayed 4days. I was diagnosed with occipital neuralgia. An MRI confirmed that degenerative disc disease had caused a narrowing of the spinal canal which was causing the pain. I continued to experience severe, sharp, pain during any form of exertion (sneezing, coughing, bowel movements, etc.) I thought my head was going to explode especially during vomiting as I couldn't
keep any food down. I suspect it was the drugs they were giving me.

As a bonus, a CTA scan showed a 3.57mm x 2.68mm distal
basilar tip saccular aneurysm, inoperable due to the location.
Way too dangerous, could cause a stroke.I feel like I am falling apart. Just something else I'll have to learn to live with. I've kept in touch with Hematology Doc at GW and fortunately already have an appt for Tuesday. I'm to get the results of the latest BMB and then Vidaza treatment scheduled for Jan 9th but that may change not knowing how I'll react to the Vidaza and the problems already experience with vomiting. He does want me to see a neural surgeon and neurologist at GW.

So for now it's a wait and see situation. I did manage to have a fun time with the little ones Christmas eve and Christmas Day and for that I'm grateful.

Best Wishes to all for a Happy and Healthy New Year. Stay well everyone. Hugs! BJ

Wow, it's great to hear from some of our crew members, even if the news isn't wonderful.

Cat, we will all keep our fingers crossed that you pass the tests with flying colors. (Of course, it's hard to type that way!) I don't know the cutoff age for BMT, just that I'm not eligible at 72. Maybe a decade younger is good enough for going thru the procedure.

Cindi, your situation with your mom reminds me so much of Posh's with her dad. I'm very happy to hear that you have given her a wonderful last year. At 89, she has led a full life.

About Mike, I don't have an email address for him. Does anyone? Cindi, you live in Garland, right? And so does Mike? My daughter lives there also, & if I had any clues, like last name, I'd have her hunt him down. Crew, let me know if anyone has a lead. Maybe we should exchange email addresses so we can keep in touch. Mine is birdmom@sti.net.

Becky Jean, good grief! You certainly have had a difficult time. I too have DDD, but not to the extent you apparently experience. And an aneurysm to boot! It must have been a miserable time for you. Be sure & let us know how your BMB results turn out.

I see my oncologist Tues, but I don't expect any change in procedure. Bronchitis is still with me, but much better thanks to the latest round of antibiotics. My GP says I may need yet another round. We'll see.

Cindi, I am so sorry about your mom. Losing a parent is awful. Just know everyone is think about her and your family.
Becky I hope the New Year holds better things for you. Having all of these problems can be very hard to keep the spirits up. Just know everyone is praying for you and everyone else the same goes for you. We trully are all in the same leaky boat...
Cat

Thank you all for your kind comments. Mom went peacefully 1-2-12 at 4:39 am. I was with her when she took her last breaths and went to heaven. She will be missed dearly, but is no longer suffering.

Becky Jean, I am so sorry to hear about your latest problems. They say God won't give you more than you can handle, but you certainly have been dealt a lot. My thoughts and prayers are with you.

I'll see if I have Mike's email somewhere. He's here in Garland, Texas, I live in the Dallas area.

Oh, Mom gave her body to science for further research, she said she hoped they could use her body to find a cure. So, we'll just be having a Memorial Service this weekend.

Take care all and good luck Sandra and Cat, I hope you get your transplants. Hugs, Cindi

Cindi I am so sorry about your Mom. it seems the last few months with her have been pretty good. Enjoy those memories! if you need a shoulder I am here for you and I know everyone else is too.

Hi Guys: It seems the bad guys (cells) are winning. The latest BMB showed an increase in abnormal cells. I have MDS w/Trisomy 8...the same as Chris. Vidaza is next on the agenda but the doc wants me to see a neural surgeon and neurologist at GeoWash first. The Neural Surgeon is next week but I don't expect a change in diagnoses.(#1625) I did get a BT while in Alabama so am feeling good with HGB of 10.5.

I really am okay with the diagnoses. It's a wake up call to put things in order, we've talked about Advance Directives but somehow always put it off. I can see now it's best to do it and move on. I still have a lot of living to do. Hugs!

Cindi,
My thoughts and prayers are with you and your family. I am sorry to hear about your Mother's passing but I know reading your posts that you made this past year one of the best years of her life and that will bring you comfort in the upcoming months. Just know that all of us are here to listen whenevery you feel like it.
Sounds like everybody's year is starting our kinda rough! I pray for all of us with this terrible disease.
Take care all with your upcoming appointments!
Janet

Ah, BJ, tough news you received. But I see that you are determined to live life to the fullest, & I admire that. I wish the best for you in 2012!

Cindi, I'm sorry about your mom's passing, but I'm happy that you were with her, & made her last year a wonderful one. What more can any of us wish for?

Wow! When reading all this I do not have anything to complain about.
BJ: I am 67 and nothing was said about my age. They only said my sister Ann couldn't be a donor because she was 73. I don't understand that 62 is to old. Did you get another opinion?
Cindi, my condolences...I held my mother when she took her last breath and it was a comfort to me. It has been 21 yrs ago and I still miss her. Talking to my sister Ann this evening and told her that I am getting all this attention from my siblings, that I would had gotten if our mother was here. She was the greatest. My sister and her husband areare bringing my brother out. There will be 3 drivers that way. I am very blessed.
Cat u can call me sg or Sandra.
I am sure I missed somone, but need to go to bed, getting tired.
Love you all even tho we haven't met. I feel very close to you all.
Hugs...Sandra

Hi all,
My name is Sandy (the gwgmti means - God will get me through it). I was originally diagnosed as suspicious of MDS in June 2010. Results from a second BMB on Dec 15, 2011 confirm the MDS diagnosis - RARS. At this point it's just a wait and see approach. No treatments yet. Back in 2010 a routine blood test showed my platelets at 89 which prompted further testing. My HGB was 13 and WBC 3.2.
Since then my counts have overall gone down. My latest counts are: HGB - 10.8, WBC - 2.25, and platelets 59. Doc says it's still a wait and see approach although the disease is now progressing.
Sounds like most of you are dealing with much more than I am.
I will keep you all in my prayers as we walk through this thing.

Hi Sandy: Welcome to the group. We are all dealing with different phases of this disease. If your HGB continues to drop (usually below 10) it looks like you will soon be on shots either Aranesp or Procrit and they may keep you stable for awhile. Thanks for the translation, love it! We have to keep positive and pray that we will all get through this as we travel the road together. I always say it's the people we meet along the way that gives this journey meaning. Hugs!