Cat, thanks for the kind words. How wonderful that your insurance will cover a BMT and that you have 3 donors. Just when it seems that things are overwhelming, the good Lord opens a door for us.
Sandy

Trica,
I am fine. Thank you for asking. Has your mom seen a MDS specialist yet? Please keep us informed as to her progress.


Beck Jean
I hope the Vidaza works for you. It has helped me. Are you doing shots or intervense? I didn't want to do the shots because it can in some people cause problems at the injection site. I figured my luck it would. When do you start? Also why isn't a BMT an opinion for you?

Cat

Hey all,
Have a fantastic weekend. A great song to listen to is Laura Story's that goes --- How many times will you pick me when I've fallen and let you down...and He answers As long as you seek my face you'll have my daily sufficient grace. That one works for all of us that have this junk and all of you fantastic folks that take care of us. It often is a great inspiration as are many of her other songs (reminders of the true source of our help) for this ole dude including the last week.

But grand babies are on the road coming to see Papa as we speak so everything is just right.

Have some fun and blame it on me .

God Bless,
Mike

Cat, Had a consult Friday to receive VIDAZA locally. We discussed injections first, but blood levels would definately drop during treatment making tranfusions necessary. He suggested a port be installed & made arrangements at the local hospital to insert the port the same day. I was out of it most of Saturday but feeling decent today. The first cycle will start on Monday and should be a breeze with the port. I'll just be happy when it is healed & be able to take a shower.

So glad VIDAZA is working for you. I have to think positive that it will work for me as well.

Stay well everyone, Hugs!

Day 1 of first cycle of Vidaza, not bad, The first round of VIDAZA was a breeze mostly due to easy access with the port. The nurse removed the bandage that was there from putting the port in on Friday, said the site was healing well--and more importantly--I
could take a shower in the morning. Yahoo!

I received a DECADRON drip for 20 minutes and then 10 minute drip of saline solution to be sure the Decadron makes it through the entire system before adding the 170 mg. of VIDAZA. Decadron has many uses ... among them is short-termed treatment of nausea caused by chemotherapy. I also have PROCHLORPERAZINE

Keeping you lifted up Becky Jean

Update: Day 1 of first cycle of Vidaza, not bad.
The first round of VIDAZA was a breeze mostly due to easy access with the port. The nurse removed the bandage that was there from putting the port in on Friday, said the site was healing well--and more importantly--I could take a shower in the morning. Yahoo!

I received a DECADRON drip for 20 minutes and then 10 minute drip of saline solution to be sure the Decadron makes it through the entire system before adding the 170 mg. of VIDAZA. Decadron has many uses ... among them is short-termed treatment of nausea caused by chemotherapy. I also have PROCHLORPERAZINE for nausea in the event I get sick at home. I'm hoping I don't have to take. I had a RX 16 years ago when I was going through chemo for breast cancer and didn't have the need to take it then.I made it through the 6 months okay.

The doc and I have been talking about this since July and it felt good to finally get started with treatment so I can move on with life.

Stay well everyone, Hugs!

Hi everyone,

Sounds like things are moving along for many of you, and I think that's good.

I returned from my wonderful Virginia trip Sunday & had my Aranesp shot today. My Hgb keeps slipping to new lows, tho. Today's is 8.7. But my attitude is that I feel 9.3, so there!

Hello everyone! I am in the hospital at U of M in Ann Arbor, MI. I am 8+ out from my bmt. I am doing expecially well. I have been communicating with Cat via e mail and my new blog (caringbridge.org/sandragroesbeck
I had one unit of blood today and my first injection of neupogen.
My brother Richard was my donor from upstate NY. My sister and her husband drove him out and they stayed in a nearby motel. Well, they came together, but my brother did most of the driving. They went back last Wed. that was hard for me to see them go. My husband has been here with me. He went home this afternoon to pay some bills, and he has a couple of doctor's appt. on Wed.
I have been so blessed with prayers, cards, phone calls...you name it. A nurse said to my huaband the other day. "you know this is serious stuff your wife has and you two have to stop thinking you are on vacation." A PA said to the doctor "are you sure we transplanted this patient? If I don't get GVHD I will be more than blessed. Love u all and thank you for all the good thoughts and prayers. They are working. SANDRA

Got so wrapped up about me forgot to thank Mike for that site...it was great.
Janet: Hope that that sinus infection leaves u soon. My brother in law was sick all the time he was here and he couldn't come and see me.
I e mailed cat.
Nice to meet you Tecia.
Sorry about the long delay. SANDRA

Sandra: So happy things are going well for you. Had a problem leaving a message on your blog. Hugs!

Sandra what an inspiration you are to all of us! You are in my thoughts and prayers that you recover quickly from your BMT and all continues to go well!
God speed!

Hi everyone, wow, a lot to catch up on. I'm so happy to see Sandra got her transplant! Yay and I'm sooooooooo glad to see Mike back. You really gave us a scare Mike. We were missing you & didn't know how to reach you. I did try sending you an email thru here.

Sorry, I've been gone a month. It is a month tomorrow since Mom passed & I still can't believe she's gone. They're turning off her phone to save money, so I made my last call "home" on Monday & my sister left to go home to San Anton. She was the one that stayed w/Mom so she didn't have to go to a nursing home or assisted living.

I've been really busy with work, so that has made the grieving easier.
My other sister is the executor of Mom's will & she's in a big hurry to get everything done. She's had us working over at the house every weekend. We have 70 yrs. of stuff to go thru & I'm not in any hurry, but she's pushing us to get the house on the mkt. UGH.

Regarding the Vidaza some of you are on, I wish Mom had tried it instead of the Dacogen. I second whoever said you should get an MDS specialist and 2nd opinions. I wish we'd have had an MDS specialist, but we had a very good Hematologist/Oncologist.

That Neupogen shot was really hard on Mom. Watch out for side affects. They prefer to give it at nite, so the first time they gave it to her at 9pm & she woke about 4am with symptoms of heart attack. They kept repeating that shot, hoping to get her white counts up. The reactions varied, but she always felt like crawling up the walls & had trouble sleeping. The theory is the Neupogen works better at night while your body is resting.

Sorry I'm wordy as usual. Good to read all your posts and see new people on here. I still feel a connection to the leaky boat crew and I thank you for all your support.

Hi everyone. Becky Jean I hope the Vidaza works for you. How is the Nausea? Stay strong and my prayers are with you.

MotorcyleGma that is a mouth full - just because your mom was on Dacogen doesn't mean Vidaza would have been better. I had 2 rounds of Vidaza and now found out that I have to go on 2 consecutive rounds 10 days of Dacogen. Five days 2 days off then 5 days. The Vidaza didn't work for me. So hopefully that will stop the progression of the desease.
My case is a little different from everyone else's. I am at the high end of MDS. We are fighting to keep it from turning into AML.
But it is going to be okay....
.

Hi all, have to admit, as my gram would have said, feeling punk. Completed 5 days of cycle 1, no nausea to speak of, just week in the knees. I'll get blood work done on Monday, probably need a BT. Just have to wait and see.

I've had support from such good friends, flowers, dinners, etc.
It sure helps. However, My fella of 57 years takes good care of me.

Can't imagine 10 days of Dacogen, Cat, but you do what you have to do. Sandra, so happy you are doing well with the BMT, make it a vacation if that's what it takes. Tecia, how is Mom doing?

Keeping positive thoughts and making the most of each day, even if it means taking a cold shower. Didn't realize it until I was in the shower that the wires to our energy box on the hot water heater had melted. So glad no fire. Whirlpool is sending out a new box which we should have on Monday. Fortunately we have two hot water heaters. One in the kitchen and one in the master bath.

Have a great weekend guys, say well. Hugs!