Husband Diagnosed With Mds 6/30/2009

[ann]

In Nov. 2008, my husband had a stint put in behind his knee and the cardiologist kept him in the hospital for a blood transfusion. In Jan. 2009, he had an upper GI because our family doctor and the gastroentlogist thought he had an ulcer, he did. 2 more units of blood. We left on a trip to celebrate our 53rd anniversary. We went to Big Bend National Park and my husband could not get out of the car to walk or do anything except look at the scenry from the car. We went on our planned vacation but had to cut it short because he could not breathe. When we got home our familly doctor sent him to a hemotologist/oncologist. He was diagnosed on 6/30/09 with MDS, and was told that the longest he would live would be 2 years or less.

He is doing the Vidaza treatments. Has had one series and gets a shot of Procrit that makes him feel lousy for a day or two. He has received 4 more blood transfusions since Jan. Has no energy and stays in his chair with a book, his remote and the Sudoko puzzle book. Has to have help drying off after his shower and is "worn out". How does this end?

[Birgitta-A]

Hi Ann,
Too sad with your husbands MDS diagnose and symptoms that made you cut your 53rd anniversary short!

You know nobody knows how long a person will live - I have never understood how doctors can tell patients that they will live 2 years or less.

Do you know anything about how your husbands MDS is staged?

Vidaza is supposed to be the best drug for many patients with MDS but the counts (the red blood cells, the white blood cells and the platelets) can decrease during the first four cycles before the patients improve.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, have now received 96 units of red blood cells, Neupogen injections 2 times/week for low white blood cells, Desferal for iron overload, asymptomatic

[Dick S]

Originally Posted by ann

He was diagnosed on 6/30/09 with MDS, and was told that the longest he would live would be 2 years or less.
Has no energy and stays in his chair with a book, his remote and the Sudoko puzzle book. Has to have help drying off after his shower and is "worn out". How does this end?

Hang in there Ann, I don't see how they can possibly predict 2 years. I was told in Feb. 2006 that I had 4-6 years and I am still going after 3 1/2 years. They simply don't know.
I can relate to the second part, I am tired and listless all the time 'cause I have the slow progressive kind and have to "watch and wait" a lot as it gets worse each day.
Encourage him to try and do as much as he can. We can never give up and neither can you.
What is your husbands name so we can pray for him?

[launch]

Ann,
My husband was very very run down and barely able to climb our stairs at our home. All he did in the first few months is stare out the window in our front room. He was very depressed at times. Reading all of the literature on MDS will depress anyone. Remember, the IPPS scores were established BEFORE they had the currently available treatments for MDS, such as Vidaza.

My husband was dx 2/17/09 and entered clinical trial e1905 on 4/01/09. He's been on it for 5 complete cycles. The treatment is Vidaza by injection for 10 days in a row, then, 18 days off to complete the total (28-Day cycle). Although the trial e1905 was to really test the MS-275 pill that they give to a patient, along with the low dose of Vidaza. It was a randomn selection by computer, and my husband is in the group that does not receive MS-275 but he does still receive 10-Days of Vidaza.

Please go to my posts under the clinical trial e1905. This string was started by the "FlowerLady", but, I've posted Ron's progress and we Praise God everyday for his improvement. And, remember, no body can tell someone how long they have, because, no body really knows.... Everyone is different. And just because your husband is not feeling good right now, doesn't mean he won't improve. My husband, Ron, has improved wonderfully! My husband is 65 yrs old. And, he is a cardiac patient. He had a stint in his heart back in 2001. He feels really good right now! We're just trying to enjoy every single day at this point....

Good Luck & God Bless you and your husband... Hang in there!
Cindy

[ann]

Thanks to all who have responded with encouraging words. We have had a wonderful week. Last week was not so great. Went to see the Oncologist and she admitted my husband to hospital. He received 4 units of blood in 3 days time and 1 unit of platelets and a Procrit shot. His counts were finally up and he was back to feeling good. Has had lots of vistors and phone calls from longtime friends wishing him the best and putting him on prayer lists. We are praying for remission. He goes for a CT scan ordered by the pulmonary doctor Tues. and back to see the oncologist that day also. Hope everything is good.

My husband is 72 years old and also has COPD and is on oxygen full time because of heart problems and the COPD. He was diagnosed at Intermediate 2 MDS on June 30, 2009.