[KWJ]

Good luck dennis. My dad is on dacogen trying to get his blast down so that he can have a mini. His brother is a perfect match but is 78…we are hoping sooner than later.

Dad’s counts are really low so we are hoping dacogen works. he is needing platelets transfused now every few days. Blood once a week.

[KWJ]

Energy levels are touch to maintain. You are fighting MDS plus chemo. My dad sleeps a lot. Sometimes 18 hours a day. It is great that your counts are responding.

Try to go easy on yourself.

[KWJ]

Ask the doctor about Sweets Syndrome. My dad got it after 2 doses of vidaza. Took them almost 7 days to figure out what it was. He got so sick, but once they figured out what it was they treated him with predisone. he got better and now is on dacogen. Waiting on BMB results now.

good luck.

[KWJ]

My dad lost 78 lbs since DX in D Feb 06. Has gained a little bit back. Starts new chemo dacogen Monday. Found a match for mini so we are hoping to get him at a point where he can be a candidate for that.

[KWJ]

Dennis – my dad was on vidaza as well, 3 rounds. Counts went down after the 1st but then came back up, next 2 doses only had 1/2 dose because his counts were so bad. Got nuepren shots, which helped his WBC but then he got sweets syndrome. Doc said Vidaza not working…MBM showed 13% blasts as opposed to 5% at his DX 2-06. Now they are gonna try Dacogen. He is transfusion dependent and his WBc is at .9. We are praying this new drug works. Wish we could do nupregen again but Doc is afraid it will bring sweets backs. Stuck between a rock and hard place.

Best wishes to you. You will have to post how you are doing on this new drug too.

[KWJ]

I am new here, I come to get info and HOPE. I do participate at another MB and have for years. There is nothing wrong with discussing topics and having meaningful debates. However in this instance when you start slamming people and posting emails about the people in question, you have stepped over a line of common decency.

I get that some of you really dissagree with Patti, but to be snarky about her choices is not right. She is trying to do whatever she can in her MIL’s fight. As we all are. Whether you have the disease or you know someone who does, we all need hope and caring.

This arguing is really a turn off who those of us who need any help we can get. When every day we are fighting to gain some insight that may help keep our loved ones here.

[KWJ]

No they don’t know for sure, but Dr Segel does not want to do them now because that is the only thing that had changed, no other meds added. Could just be a coincidence but he is unwilling to chance it. So for now we wait. Waiting really sucks! LOL.

Sweets went away with predisone and no more neupogen. Thank gos it went away. It was horrible.

[KWJ]

My dad is 64 and sees Dr Segel in Portland at the Rose Garden Cancer Center. After his last dose on Vidaza is white cells are low again and he is in isolation. He is transfusion dependent, every 2 weeks. He can’t have nuepregen because last time he had that he got Sweets Syndrome and ended up in the hospital for 2 weeks. I was afraid he was not coming home after that.

Does your sister still live there on Pacific?? My parents are really close to that, I bet they know each other.

[KWJ]

My parents live on Pacific! When did you live there? It is a small world. My Dad saw Dr Segel today, no change in counts. He is in isolation again after this last dose of Vidaza. That sucks. He is having a BM biopsy Tuesday.

Thanks for the info on Dr Kou. I could not believe when I was reading about him here that he was in Port. I am trying to convince Dad to give it a try.

[KWJ]

Hello – I am new to MB’s but have been reading a lot lately here. Was wondering how much does it cost to be treated by Dr Kou. I have been trying to talk my Dad in to seeing him. Viadaza not working for him, he is not being sent up to OHSu for s SCT program.

And Patti – I live in St Helens and my parents in Columbia City – just down the street from you. Who does your mom see for MDS?

[Author]

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