Sandra my dad was so tired of drs. towards the end he was there 3 times a week. I am here if you need to talk. you can send me your number if you want to talk on the phone. I know how hard this time is. I am here for you and everyone here.

sensinib what medication is he on? a friend of mine's wife had that and was on thalomide and it worked pretty good for awhile.

MIllie does he see a specialist for his mds? honey come here and vent and cry all you need! we do understand. ((((hugs)))))

Joe goes to a hematologist and receives Procrit every week and iron every couple of weeks. Had a transfusion about 6 weeks ago. Should I be pushing the doctor to try Vidaza. Dr. said side effects are terrible. Anyone know if that is correct? I want to do right by Joe but don't know what right is.

Joe just got back from having a Procrit shot and iron infusion. He was supposed to wait for me to come back from exercising (that helps me a little) and, of course, he was gone when I came back. Anyway, his hemoglobin is 8.5 and transfusion was mentioned. He told them he wanted to speak with another of his doctors before he decides. That dr. is great but a urologist. He seems so confused at time. I am so scared. I emailed the hematologist (he takes no phone calls, only emails) that we want the transfusion ASAP. This is sometimes more than I can bear. Don't know if my husband realizes how serious this is.

Millie:

I am so sorry that you are going through this. Everyone is different but
my Hemo doc says any time my HGB is below 10, I get a shot of Aranesp and anytime it is below 9, I get a blood transfusion. No if's and's or's about it.

I'm scheduled for Vidaza series beginning Jan 9th. Just have to wait and see. I can understand that you are confused and scared.

I had a BMB today and we'll see what happens when I see him on Jan 3rd.I'll be posting later on the new member.

Hang in there, this is not an easy journey. Just remember we are here for you. Hugs!

Becky Jean,
What is the difference between procrit and aranesp? Aranesp has never even been mentioned to me. Still waiting for an answer from the Hemo re: transfusion. What is a BMB? Wonder if this Dr. is treating my Joe correctly. Wonder if the Mayo Clinic in Jacksonville has any miracle drugs up their sleeves. This is the Season for miracles. I hope we all get one. Thanks for being there for me.

Millie: As best I know Procrit is given every week, Aranesp can be given every 2or3 weeks. It helps promote blood cell production and reduce the need for transfusion. Some of us get Procrit and others Aranesp. It really depends on the doctor.

IF you ever get to talk with the Hematologist and ask him to put standing orders in the file.

Sorry for using initials easier than spelling out.
BMB...Bone marrow biopsy,
BMT...Bone Marrow Transplant.
Hugs!

Millie I completely understand your husband wanting to see his urologist. Vidaza is a strong medication and can affect kidney function. if you go to the new members section here someone has posted a link to a website that is very very helpful. this place will send you free booklets on mds. I got it when my dad was diagosed and it helped understand. mds is a roller coaster ride for sure.

No response from hematologist. Joe gets Procrit every Friday but this coming Friday, the cancer center is closed for the holiday. Yikes! The urologist told Joe if he doesn't feel a lot better by Sunday AM to call him and he will have him hospitalized. The hema did mention Vidaza to us about a month ago but was reluctant to give it because of nasty side effects. Thoughts?

Joe has had Vidaza 5 days in a row. Between the drive, the wait to be taken, the treatment and the drive home, 4 hours go by. I am exhausted; he is too. Wonder if this will bring him some quality of life.

Hi everyone, I've been gone a while. Welcome Millie, sorry for what you are going through. It is a tough ride for sure, we've been on this rollercoaster ride since April with my 89 yr. old Mom.

Mom tried to fight the battle, but she didn't get her miracle. We did 4 rounds of chemo, Dacogen, and had over 23 transfusions of blood and platelets. Earlier this month, she was hospitalized for pneumonia and beat it. At that time, the Dr. told us unfortunately, the chemo hadn't worked and we should consider hospice. Mom agreed to stick around thru the holidays. She didn't want us to go thru a loss during Christmas. We had a beautiful Christmas with over 40 of us and Mom insisted on going to church, which she did. Her blood count that night was about 5 red, so she spent Christmas eve in the hospital getting a transfusion. The transfusions have quit working now and the Dr. told us on Thursday, no more. We had one more transfusion of blood & platelets and then they sent her home. I'm here with her tonight, heart breaking, as we wait for her to get her wings. Mom is ready to join her sister, Alice, who just went to heaven on Dec. 17. Yesterday, Mom was fine, walking around and playing games with the grandkids. Tonight, she's not able to get out of bed. We're saying our goodbyes and my heart aches.

I hope they find a cure for this damn disease that took my vibrant, energizer bunny Mom. I will check in here from time to time as Elaine does as I've learned alot on this path and I know its been a great support for me. Happy New Year everyone and pray for my family as we go thru the grief of losing our dear Mother, grandmother and overall great person. God Bless you all. Cindi

MotorcycleGma, I'm crying right along with you. I am so sorry for your loss. Guess I'm also crying for what this road probably has in store for us . You and your family are in my prayers.

Mom did pass away peacefully on 1-2-12 at 4:39 am. We will miss her dearly, but she is no longer suffering. I got to be there to watch her take her last breaths. Mom is in heaven with Dad and our favorite Aunt who just passed Dec. 17. Mom donated her body to science so more research could be done on her.

Millie, please don't feel discouraged. My mom had a very severe case and she was 89. She had the weird gene thing that made it difficult to cure. I didn't read to see how old your Joe is, but if he's younger, he has a much better chance. Also, my sister says she wished they had used Vidaza on Mom, she thinks its better than Dacogen. You can always go for a 2nd opinion. I don't know where you live, but we sought a 2nd opinion from one of the university hospitals. They agreed with our Dr.'s treatment plan. There are MDS Center for Excellence, one of which is located in San Antonio. Go to the mds.org website to check for these locations. Mom wouldn't go to San Antonio, so we were pretty much stuck here in Dallas. Prayers for you everyone else and hang in there. Cindi

Cindi I am so sorry for your loss. I went thru it in May and it is horrible.

My Dad passed standing up in my arms. I have to say it is horrible now. I wish you all the best hon.