Dacogen

[Mary4Mike]

Russ,

I have been following your posts for quite some time and pray that you (and everyone else with this dreadful disease) are getting along as well as can be expected. I am wondering how you are doing on Dacogen. You must have completed your second round by now, am I correct? Did they pre med you every dose with a steroid? May I ask which steroid and what was the dosage? Have you experienced the big drop in counts yet? How about all the other “unpleasant” side effect ie mouth sores, nosebleeds, etc.? How has your doctor handled these?

I have many questions because my husband, Mike, is going to begin Dacogen for the second time on Monday. He did 2 rd. earlier this year and nadired hard. He was the first patient that our doctor had put on Dacogen and instead of leaving him on it and roughing out the initial “stuff”, he took him off it and put him on Revlimid. The thing that is making us optimistic about the Dacogen is that his bloodwork prior to beginning Revlimid (one month off Dacogen) was the best it had been in a few years. We are praying that we get the same response. We are going to be more diligent about getting supportive care from our doc this time. By the time he was tx, his HGB was 7 and his platelets were 6.

If you can offer any suggestions, we would greatly appreciate it. Take care of yourself, Russ.

[Russ P.]

Mary, you are correct I just finished my 2nd rd Dacogen and my nadir was yesterday. My numbers except for HGB were very low but not quite as bad as after the 1st round.

E-mail me at ripoole@yahoo.com and I’ll send a Word doc with my CBC and treatment since 2005.
Go right to page 5 for the latest.

My premed consists of Decadron (dexamethasone 2mg) and Anzemet. The Decadron was only on the 1st day and the Anzemet was every day. My doc had a CBC run and checked on me 3 days out of the 5 that I was getting Dacogen.

As far as side effects, after the nadir of the 1st round I had blood blisters in my mouth (PLT of 13). So far OK this round but it could be a week early. I was very full of stomach gas the 4th day of both rds. I seemed to be more short of breath this time even with HGB of 10 and O2 of 98%. Doc said it was OK to try 5mg of prednisone for 3 days.

Let me know if I missed any questions I can answer by e-mail. I would like to recommend the Michiana Hematology clinic and Dr. Taber. Perhaps where you live in MI is not to far from South Bend.

Mike will be in my prayers. Blessings,
Russ

[Mary4Mike]

Russ,

Thanks for the quick response. I will email you from our home PC for that info when we get home next week. I will want to print it out. We have been blessed with a wonderful month in Florida. Mike has felt pretty good and we have enjoyed wonerful weather. (we understand that it is snowing at home!!!) Mike sees a doctor down here for weekly CBCs and has had 2 TX down here. He has had no other treatment for the past 6 weeks except Exjade. Monday he begins Dacogen.

Did your doctor give you anything for your mouth sores. Mike’s doc gave him a RX for Ann Arbor mouth wash. It really helped. It had to be compounded – benadryl, flagyl, tetracycline and a bunch of other things.

Thank you for the recommendation of Dr. Taber and the Michiana Hematology clinic. I am assuming this is where you go. It is always good to have an alternative place to turn to and South Bend is around 3 hours from us. Mike is on that side of the state a lot for business and driving doesn’t bother him. I think a lot of the doctors out there are strictly into a cookie cutter way of treatment. The town where we live is building a brand new cancer center and we are praying that they recruit cutting edge doctors. Mike currently sees a doctor in a cancer clinic 45 minutes away. He receives his TXs at our local hospital 5 minutes away.

Watch for my email next week! Thanks again and take care of yourself!

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