husband with mds

[dmh]

My husband was dx with mds in May. He has trans every week or two. The Dr. tried Vidazia but for only 2 rounds as he said it was doing nothing. Now he is on Dacogon. He had one round of 5 treatments and was to have another last week but his w/c count was too low. They did 3 nupogen shots instead and will do the Dacogen next week if counts are up. He lost a lot of weight as he wasn't eating anything for awhile but now is doing better and maintaining his weight. I give him something to eat every couple of hours. He is so weak and at times he can barely make it from room to room. He also has a lot of pain and wears a pain patch. I'm wondering if everyone has the weakness and pain?? Is this because of the treatment?
He is 66 and I am 62 so a lot of this stuff is very confusing for us.

[anne&dean]

My husband finished his first treatment of dacogen on the 14th of November. He is very weak, but I have been forceing him to eat, drink ensure, and lots of liquids. During is treatment he had 2 units of blood on his third day. He has had problems with constipation, but we have finally figured out with help from the doctor to stop the fiber he was drinking and to take more stool softners, and a laxative on the third day if his bowels do not move. He lost 7 more pounds in two weeks. He rec'd 2 more units of blood yesterday and platelets. He is having night sweats, about every other night. He has developed a sore throat, but the doctor told us as long as he was not running a fever over 100.9 to treat it with over the counter meds, and warm salt water. His white blood count is down to .9, rbc 2.6, hgb 8.1, and before transfussions yesterday his platelets were 5. He goes back on Dec. 1 for more blood and whatever he needs. They are trying to build him up so that he can get a port, as his veins are very bad. I have bought mask for people to wear that come to visit and am putting a sign out that if you have a cold etc., please do not visit. I have noticed alot of depression, but am trying to keep him in constant contact with people, so that he thinks about other things, the phone is wonderful. I really feel that we can beat this! A positive attitude means more than anything else from what I have read. My husband is a great cook, and as much as I feel sorry for him due to his weakness, I had him fix dinner the other night. You have to keep them active as much as possible or they will get weaker. Just having them do little things around the house helps this! We have several computers and I got him to help me fix a problem that I was having on one the other day. Think of little things you can get your husband to do, I know it is hard not to wait on them hand and foot as I have found myself doing this, but it is not good for them. Push them, make them apart of everything you can, even if it is just helping fold clothes from the laundry. Keep them involved in everyday life, don't make them an outsider.
anne

[Birgitta-A]

Hi Anne,
You are a wonderful support to Dean!

Have you read one of the articles about neutropenia (low white blood cells)?
http://www.neutropenia.ca/about/living.html

I am following their advices sinc I had neutropenic fever 15 months ago and have managed well (knock on wood). Then I take Neupogen 2 injections/week to keep my white blood cells up and that of cause helps too but not for virus infections. I think you are right about the impact of a positive attitude.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusions for iron overload, Neupogen 2 injections/week, asymptomatic

[run4peach1]

Originally Posted by dmh

My husband was dx with mds in May. He has trans every week or two. The Dr. tried Vidazia but for only 2 rounds as he said it was doing nothing. Now he is on Dacogon. He had one round of 5 treatments and was to have another last week but his w/c count was too low. They did 3 nupogen shots instead and will do the Dacogen next week if counts are up. He lost a lot of weight as he wasn't eating anything for awhile but now is doing better and maintaining his weight. I give him something to eat every couple of hours. He is so weak and at times he can barely make it from room to room. He also has a lot of pain and wears a pain patch. I'm wondering if everyone has the weakness and pain?? Is this because of the treatment?
He is 66 and I am 62 so a lot of this stuff is very confusing for us.

Yes, dacogen is very strong. My Dad got his second cycle and it wiped his counts out. He is still in the hospital trying to get them up. I'm not a doctor of course, but my Dad's doctor did attribute his clunts dropping to the dacogen. God Bless.