dacogen

[Carl]

Russ,

I didn’t have any troubles with pain (bone-muscle??) that is typical with Neulasta or Neupogen in some cases. I have had it in the past though and it does get your attention. It should minimize after a few days and you may not even have the same reaction again. It just physically shows something is “working”.

My doc said for me to wait for another week before I go to the second round of Dacogen. Something to do with recovery time.

[Russ]

Thanks, Carl. Interesting your doc is having you wait another week. I have seen this posted before so it sounds like a good idea. Also noted that the dosage info for Neulasta warns against using it before 24 hours after the cytoxic chemo. I got my shot just when the Dacogen was done.

[Jim]

I have been sitting on the sidelines reading about everybodys adventures with MDS for some time now without much to contribute. I was especially sadened by Dennis’s death. My MDS has been pretty steady until now. I had a BMB last week that showed my blast level rose to 12% from 5% last January. My Doc is considering putting me on Dacogen so I’m very interested in this thread. The one question I have is how is it administered? One person said it’s done by IV and you have to be in the hospital for three days. Another said it’s IV but as an out patient just like the Vidaza shots.

JW

[lynette]

Jim,
Dacogen can be administered either way. There have been a few research studies that favored the 5 day outpatient route. Mom had the outpatient infusion–1 hour per day for 5 days.
Lynette

[Russ]

Jim, I get my Dacogen by IV as outpatient. It takes about 1.5 hrs, 5 days a week then no treatment for 3 weeks. Best wishes on your
fight.

[Jim]

Thanks for the info. Do you get the drug thru a straight IV or do you have “ports” installed?

JW

[Carl]

Jim,

On me they just put in a regular IV cathater in my arm and left it in for 5 days. It was wrapped up when I got through with the treatment and went home.

[Angie W.]

Hi –
My dad has completed his 3rd cycle of Decitabine. In July, his blasts were 70%. Yesterday we got the results from the BMB that they are now 5%! He receives transfusions once or twice a week. Platelets are exceptionally low. But he is feeling better than he has felt in a long time. We are very happy with the results that we’re seeing with the Decitabine. (He is admitted to the hospital for 4 days to receive this chemo. Has a porta-cath)

[JaniceR]

My dad gets it just through a regular IV as an outpatient for five days in a row.

[Dottieb]

Angie,

[Dottieb]

Angie, Boy am I having a tough time typing tonght. Sorry for the incomplete messages. Will try again. John also has completed 3 cycles. His counts as of yesterday, I think 12 days past treatment were not good, expected as much. wbc is .9 exactly what it was after the 2nd cycle. Had tx, but today is feeling much better. I was flabergasted by the decrease in blast activity for your Dad. John will have a bmb after the 4th cycle which I think is Oct. 10. He will also be put on exjade and after reading some of the comments on this list, I believe we will ask afor lower dose to start. Dottie

[Angie W.]

Dottie –
We were very surprised at the dramatic decrease also. I had been praying for ‘same or lower blasts’. Wow!! Had just wanted the decitabine to keep AML at bay.

He had MDS for a year before progressing to AML (M-2).

He is now able to participate in our Leukemia Society’s Light the Night Walk. And go with us on our annual family vacation to the beach. Very, very thankful.

[Jim]

My Doc is having a Porta-Cath installed Friday and I start Dacogen Monday as an out patient for the five day cycles. Doc chose the port because he feels he will have to use it for other items as the treatment progresses. I understand where he is coming from and that bothers me. I’m going in with an HGB of 9, WBC of 1.5 and Platelets of 15. Not the best of conditions.

JW

[patti]

Jim,

I guess my only advice is to really consider if you need that porta-cath and YOU make the call. My MIL has been holding the leukemia off for 2yrs pretty darn well but as soon as she had her picc line installed she has gone straight downhill. Her platelets were 8K going into it and had been for more then a year. She had never had a platelet transfusion. The installation of her picc did not go well and she has had to have platelet transfusions since. We have not yet been able to confirm she’s leukemic but it does appear that way and we hope to have some sort of confirmation in the next few weeks so we can figure out what to do. Maybe age has a lot to do with it (she’s 76), maybe blast count (they eliminated RAEB-t and now call it leukemia which is where she’s been since the beginning) and your white cells are a smidgen higher (hers were 1000 at the time). I guess all I can say is if you don’t need it now and you are taking good care of your veins (rotating, letting them heal, eating good “vein” foods) then you really don’t need the cath. Mom was originally supposed to have a cath put in after the picc but we were never able to do it because of what happened with her. We believe it was the stress on her body that caused her immune system to plummet and not be able to recover.

Marla is a good one for knowing about taking care of the veins, etc. Wish we’d talked to her two years ago about it.

Take care,

Patti

[Carl]

Jim,

I just have a regular IV cathater inserted in a vein in my arm. It stays in for five days and is wrapped up so I won’t pull it out at night. Works fine for me and, like you, I really didn’t want a porta-cath.

Have a frank discussion with your doc and tell him how you feel about it.

[Author]

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