Thanks Becky Jean I appreciate your help and knowledge I am waiting on the doctor to call me back . I emailed her some questions and her nurse said she was gonna email me back but decided she will call me so I am waiting ......my mom did give her permission to speak with me ....as I have questions .The group has really helped me start dealing better with this cause while its not my mom you all are experiencing it and at least i know what to ask and what to look forward to .

So just talked to mommy's doctor seems as if mommy is low risk Mds ,she has had it about 6 years ...she did procrit but it stopped working and is on vidaza but the doctor has to cut back to about 30 percent thedoctor told me that the transition to leukemia will be sudden and the end will be soon to follow she could not tell me a timeline but because mommy has had it for so long she encouraged me to start spending time she said that if and when the blood work shows that it is leukemia she will notify me ........I am lost right now I don't want to cry but cannot stop this just became very real to me.

Tecia, It really is okay to cry. You don't permission from anyone. I'm glad the doctor finally got back to you. I'm sorry she didn't send you an email or copies of her reports because I'm sure it was hard to understand everything she said. She may have told you what type of MDS. I'm thinking Mom must have had a BMB before the VIDAZA started to determine that the Procrit shots weren't working and probably another BMB more recent to determine the need to cut back to 30%.

It sounds like she plans another series of VIDAZA, if there is concern for Leukemia how often will she be doing a BMB and could she send you updates.

It really is hard to understand this disease but these are some of the questions I'd be asking if it were me.

You probably should take her advise and try to spend some time with Mom. Tecia, I'm so sorry that Mom is going through this and you are so far away. I hope that you can find the courage and strength you need to get you though each day. Our prayers are with you.
Hugs!

Thanks Becky ...today I woke up to a ice storm and as I looked out the window I realized how truly blessed I am........I tasked the doctor to notify me if and when she notices the mds into leukemia she said it will be sudden and then the leukemia will be aggressive. But this disease is something I am not familiar with it is a cancer that's not a cancer.......but we are gonna hold each other up along this journey....so hugging you back today.....and sending out to anyone who is reading this and there kid isn't around I am being a surrogate kid today and sending you a hug too

Miss ya'll where everybody at?

hi everyone! Tecia it can turn into leukemia and it does go fast. I went thru all this with my Dad but they never said he had the leukemia until we got his death certificate. He never took the vidaza or any other chemo. we did supportive care...transfusions...until they stopped working. spend as much time as possible with her. it does sound like she is pretty stable though which is good. keep us posted hon.

Hi everyone, I've been gone a while sorry. Thanks for your notes of condolence. Busy with work and cleaning out Mom's house.

Tecia, it is nice to meet you. I've been on this rollercoaster with this disease and unfortunately, my Mom just passed a month ago. She had the high risk MDS diagnosed in April and she made it to January. The Dr. never would give us an idea of "how long".

It's good your Mom has the lower risk MDS and is on Vidaza I think. Be aware when she has the chemo, it knocks all the counts down for a few weeks before it gets better. That's why they supplement with blood transfusions & shots, but if you get too many transfusions you can become transfusion dependent. Mom started out once every 6 wks, than a couple times a month and then finally weekly. I'm a blood donor now and will gladly donate so those of you with MDS can benefit.

In December, one of the ER dr's commented, "how long are you going to keep this up" which I thought was a crappy remark. Then our real Dr. finally told us that the blood wasn't working anymore, Mom was hemorraging and there was nothing they could do. She had one more transfusion & they sent us home. I knew it wouldn't be long with counts of 4 and 1. Mom had her choice of ICU or home and she chose home. We were happy to be there with her when she got her wings. She played games with the grandkids that weekend and enjoyed saying her goodbyes.

Millie, how is your Joe doing? I'm sorry the chemo is so draining for you. I hope it works well for him and those counts go up!

Becky Jean, I'm glad you've started your treatment and I hope it goes well for you and you don't have any bad reactions. I've heard the Vidaza is better than the Dacogen.

I hope I haven't been too descriptive telling you how Mom's final days were. I'll try to check in more often so I won't be so wordy. Take care & God Bless You all on your journeys.

Happy 86 Birthday mommy!!!!!

Posh I am yeah I stay on pins and needles gonna try and start a chart on her transfusions seems like one every few weeks the lowest I know her blood has dropped is 6 and 7 ...she is a tough ole cookie...lol

Motorcycle you have my prayers My heart goes out to you and I know that I will have to go through those moments as you have ...the losing part scares me to death she is such a big part of my life ......I pray your strength..

Love you everyone. Stay encouraged

Joe is doing very well after his 2nd round of Vidaza. Hgb is 12 - hooray! Can't believe the difference a couple of weeks has made. So glad Cat told me about MDS specialists. I had no idea they even existed. I remain hopeful that Vidaza will continue keeping Joe on a steady keel. Hugs to all of you - patients and caregivers. It is one heck of a tough road but this support group has given me a place to vent when I'm down and a place to share when things are looking up.

Millie I was happy to hear Joe is doing so well. Is he chasing you around the house with all his new found energy? Did you ever go to the heart specialist?
How are his other counts? WBC & PLAT?
Very happy for you.....
Cat

Joe went for CBC today. Hgb went down to 9.7. WBC is 9.7, RBC 3.06, platelets 150. He has a lot more energy but there is some confusion. Wonder if this is normal?

Hope all is going well with you.

Cat,
Forgot - yes we went to heart specialist. He doubled the lisprinorol, lasix and potassium. Joe has a defibrillator and dr. said 2 valves are leaking thus the doubling. Doesn't want to do surgery at this point and I agree.

Millie how is Joe feeling? You haven't said lately. Hope that is a good sign.
Cat

Cat, he is not doing well and I'm scared. He seems exhausted all the time. Went for a bladder scan today since he is drinking but nothing is coming out. Kidney failure? Tomorrow is another CBC and then the following week 3rd round of Vidaza.

Millie please keep us informed how Joe is doing. Hope His counts are up. And hope he starts to urniate.
Cat