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[anne&dean]

Hi All,

Not sure I posted in the right forum. My husband was dignaosed with MDS in Oct. refractory amenia with excess blasts -1, IPSS score Int-2. His counts on 11-10-08 were Hemoglobin 8.6, red blood count 2.77, platelet count 41, white blood count 1.7.

He started Dacogen Monday, Nov. 10th. he took this every day this week, he will be taking it for 5 days straight, then off 3 weeks, then back on. They gave him 2 units of blood of Wednesday after his treatment. Wednesday he was very weak, and tired. The same Thursday. Friday he felt better more engergy. Today Saturday he feels very, very weak.

If anyone has had this treatment or familiar with it please let me know. I have talked with Dr. and he says that the weakness is part of the treatment.

My husband has a irregular heart , and yesterday it was really high 120, but then was jumping down to 96, 70.

anne&dean

[Robsocal]

Hi Anne, My name is Rob and I was just diagnosed with MDS last month. My blood counts are very similiar to your husbands. I am supposed to start Dacogen Monday, however I need some outpatient surgery for skin cancer issues so I think it may be put off for now. From what I have read it sounds like the side effects of Dacogen aren't too bad for the most part. Good luck to you two.

[anne&dean]

Hi All,

Just wanted to update you my husbands first round of treatments of dacogen. He took 5 days of it last week. Wednesday the third day was very tireing for him, they also gave him 2 units of blood. He slept most of that day and night. Thursday he was still real weak. Feeling a little stronger Friday.
Monday he drove hiself to the clinic for a blood test and was able to go to the grocery store to pick up a few things. We have not heard from the blood test , but have seen on the computer that his doctor has scheduled him for a treatment next Monday after his office visit. I assume that this will be for more blood.

So far the only problem he has had is constipation. This is Tuesday the week after the first series of treatments.

Would love to hear from anyone on these treatments.

I was surprised to read the post from Rob as my husband had surgery for skin cancer this summer. Strange isn't it?

anne&dean

[towncarlady]

Originally Posted by anne&dean

Hi All,

Just wanted to update you my husbands first round of treatments of dacogen. He took 5 days of it last week. Wednesday the third day was very tireing for him, they also gave him 2 units of blood. He slept most of that day and night. Thursday he was still real weak. Feeling a little stronger Friday.
Monday he drove hiself to the clinic for a blood test and was able to go to the grocery store to pick up a few things. We have not heard from the blood test , but have seen on the computer that his doctor has scheduled him for a treatment next Monday after his office visit. I assume that this will be for more blood.

So far the only problem he has had is constipation. This is Tuesday the week after the first series of treatments.

Would love to hear from anyone on these treatments.

I was surprised to read the post from Rob as my husband had surgery for skin cancer this summer. Strange isn't it?

anne&dean

Hello,

I am also new at this MDS journey. I am also new at this forum...trying to learn. I began treatment with Decagen in September. I have completed my third round. All I can say definitely is that it is a roller coaster ride, but I am beginning to understand more about what to expect.

I will be happy to share what little I have experienced.

Towncarlady