Hi Laura
 

I am glad that you are in better Spirits! Keep up the good work! Hugs,V

BMB
 

Tomorrow at 11 is my 4TH bmb. I have days when I see no rash but I have to completely cover up in the car because even indirect light will pop it out. I feel good but the drugs really mess with my muscles still. I hope I get another reduction this week. Even with all the immune suppressant my counts are good.
WBC 6.2
RBC 3.64
Hemoglobin 12.3
Hemocrit 35.8
Platelets 109
neuts4.22
Lymphs (which they are really suppressing)1.51
Chemistry all good little bit elevated on bun and alt from all the drugs
CMV still neg
Love to all Vera

90 days
 

Hi Vera,
Congratulation to the very impressive counts :)! Too bad that light makes the rash pop out and that you have problems with your muscles - as you wrote these symptoms will hopefully disappear.
Kind regards
Birgitta-A

day 93
 

Hi all,
my little nurse practitioner did my bmb and she is not much over 5 feet. She said i had really strong bones and she was sweating up a storm. She did not get enough bone so she went in twice...YUCK!! However they gave me ativan and a shot of Demerol but I still felt the first puncture with that pressure running down my leg and butt! I hate that part. They lowered my Prednisone another 10 mg. Rash is good, I still have muscle weakness and I move as much as I can.Still can't complain, I am feeling well. Next Friday is day 100!! My hair looks like twigs in a field and my finger nails are all coming off.
I got an E-mail from Heather. She has been back in the hospital for a month now with GVH but she has hopes of being released today. Please say a little prayer for her!

BMB Report
 

My bone marrow biopsy came back totally normal and I have no MDS. The chromosome report is not in yet but it was normal to begin with and I am still waiting on the % of donor cells report. I am getting my regular flu shot tomorrow with my local hematologist. we are not sure how much good it will do me but my whites are 7.7 and neuts 6 even with all the immune suppressants:) so I think my immune system just might a fighting machine! they cut the prednisone down to 30 mgs now from 100, I am very Happy!!!!

I know I already said this via email but I am SO HAPPY to hear the great news Vera!!! That is so awesome and I know the chromosomes will all be perfect too!!!

Hi Vera,

Good news.That kind of news raise my morale.

That's brilliant news, Vera! Oh, what a relief it must be to hear the words "no MDS"! Congratulations!

Just in case any one forgot...... TODAY IS DAY +100 !!!!!

YEAH!!!!!!!! CONGRATS!!!!!!!!!!!!!!!!

I hope you celebrate!!!

Laura

way to go!
 

Hi Vera,
This is fantastic! Way to go!!
Take care,
Beryl

More BMB information
 

My Chromosomes are still normal. My husband had to ask again if my MDS was gone. These UCSF doctors are so guarded you could tell he was very pleased with my outcome. My white cells are 100% donor and my reds are 98% but that is due to the immune suppression drugs. I forgot to see if my blood type changed. Dennis asks the doctor if this is all good news and he finally smiled and said it was very good news!! So I am doing a daily drop in the prednisone down to 15% by the end of the week. After I get off the prednisone I can get off the valcyte. And go back to local care!!:)

Congrats!
 

Vera, What wonderful news for you! You must feel it's been a long time coming, but so welcome. Best wishes for continued good health, and a speedy recovery!

Has anyone heard from Heather (Flowerlady)?
 

Vera or Brigitta, have you had news of Heather recently. I am anxious to hear how she is doing.

TJ (21 year old boyfriend of my daughter) is just over day 100 after his BMT. He is doing well, but must be very cautious about infection. He is having a hard time gaining weight. He is down to 120lbs and is six feet tall. Any suggestions for gaining weight?

Melissa, hang in there, and good wishes and prayers for both you and Beryl.

You could see if he would drink those nutritional drinks. Otherwise encourage him to eat high calorie foods. Or he could try eating many small meals throughout the day, that way he is eating more.

How are you?
 

Hi Vera,
How are you doing?? I like to hear about your progress!
Take care,
beryl

My progress
 

Hi Beryl, all in all I am doing well. I have a few minor issues, my rash still pops up from time to time. I am having some mild gut issues and I went back on stomach steroids but less than last time.They are already helping. Still waiting for hair, eyelashes and nails! They are slowly moving like turtles, my magnesium was real low last blood test so I went back on 1000 mg a day. This week it was back to top of the range. Some yeast issues even with all the fungus medicine I take but my tests showed that the Vfend was suppressing something. Eyes are blurry and water a lot they are not sure if it is gvh, my nose runs and lips are dry, I have dry mouth! My stamina is better but I still have to be careful. I have tingling in my feet and numbness but not all the time! I have pinched nerves in my shoulder blade but my Chiropractor is helping me. I get tired but most of the time I feel pretty good, My best friend that lives in San Fransisco Met us at our hotel and we all went out for dinner, we went early and no one was there so we got a back booth, That was my first outing since June! She was a superb assistant caregiver and I ordered her some hand crafted Roman glass earrings from Israel, she loved them.I just have a lot of minor irritating things but nothing major, I was very blessed! Now..How are you?

Vera,
Are you taking anything for the nerve pain? I am and it helps a lot.

I had issues with really dry lips...vanicream chapstick and the Bee's Wax Medicated chapstick work great for it.

Hoping things clear up for you soon.

Laura

Hi vera!
 

Hi Vera,
I'm ok. It's good to hear your update. I'm still on Vidaza- I just started my 5th cycle and got another bone marrow test today too. My energy is good and it's still hard to believe I'm sick. My blasts are down from 13% to 8% and my chromosomal abnormalities have gone from 100% to 80%. I'm seeing an acupuncturist, doing EMDR, drinking fresh organic juices and taking vitamins like a fiend. I'm in training for the BMT. My Doc wants me to do it in the late winter but I'm pushing for early June. My son is getting married mid May and I want to help with the reception etc. I also don't like the idea of being at the mercy of winter weather. I feel very scared of the whole thing. I think I'll make it through but it feels very scary. Is there anything you would do differently? Are you staying near your hospital for 6 months? That's the plan for me.
Thanks for writing- i appreciate it.
Take care,
beryl

Heather
 

Hi all,I just thought it important to mention my dear Heather again. She has been having such a hard time with her GVH. She recently got off the feeding bag and is having a hard time still gaining weight. She is down to 90 pounds. Please keep her in your thoughts and pray for her to be whole, She is really a warrior! Peace and love Vera

Hi everyone,
I hope you don't mind me intruding on your group, but I just wanted to say that I love reading your posts. My son is on day +82 and as he is so young, I worry that he won't be able to communicate some discomforts to me. It helps me so much hearing your experiences so I know what to look for.

Thanks so much for sharing!
Jen

Hi Jen. As far as I am concerned these posts are for all of us, It might be harder on you but your son probably won't remember too much of this and will go on to have a healthy happy life.:)

I agree with Vera. These posts are for everyone. Feel free to read or post whatever Jen :) We are here for everyone.
Laura

Vera
 

Hi Everyone,

I am writing to let you all know that our dear friend Vera has been hospitalized since last Tuesday at UCSF with lung issues that they are still trying to determine. Dennis, her husband has asked us all to please keep her in our prayers! She was on a respirator at the time of his message. Dennis asked that we let everyone know and continue praying. Hope you are all doing well...I will write more about myself at another time....right now lets pray that Vera is soon home! ;)

We have all of our fingers crossed for Vera and her family. I hope she knows how good a friend she is to so many people here and how big a cheering section she has.