Dacogen at home

[LuAnn]

Hello everyone, I was reading thru the posts about some members getting Dacogen treatment at home? My dad is coming off Revlimid and the doc wants to start him on Dacogen. It’s 5 days in the dr. office and the drug will be administered by IV over 1 1/2 hours. I’d love to know how we can do this at home. As for the Revlimid, dad was on it approx. 2 months but no response. He is 84 and is getting xfused about 1 to 2 times every 2 weeks. The dr. feels its a good time to try Dacogen. Dad was previously on Vidaza and while after 6 treatments his transfusion frequency decreased a bit, the Vidaza made him very weak. After 6 cycles, the doc took him off. I hope the Dacogen doesn’t have the same effect on him. My paryers are with all of you.
LuAnn…

[jaxem]

LuAnn
i had written several times about my wife’s experience with this admin taken from successful trials at MD Anderson. The rate you state from your doc is strange to me. In the hospital as stated by the Dacogen manufacturer, MGI Pharma, normally it is given 3 hours every 8 hours for 3 days at 15 mg/KG of patient weight. MD Anderson proved similar success using Dacogen at 3 hours/day for 5 days at 20 mg/KG of patient weight. 6 rounds are recommended and the 1st round should be done in the hospital to determine if there are any side effects. we did rounds 2 through 6 at home by using an outside pharmacy mixing the drug and an outside nursing company to administer the drug. Worked out great for us. Your insurance company will encourage it because it’s not being done in the hospital at probably $5,000/day or more.

[LuAnn]

Thanks Jack. I’m not sure of the dosage but it seems pretty common that drs. dispense in office over 5 straight days. My dad’s doc has 3 other patients on same regimen and I’ve read that based on trials this is the most effective dosing of the med. I hope it works. So far he is doing OK. We were told his counts would drop very low after the first treatment and if so, the dosage may be adjusted. Hopefully I’ll have some good news to post as a result of this drug. Stay well.

[Russ P.]

LuAnn,
I questioned Dr. Issa at MD Anderson about the difference between the 5 day dosage routine that I am on and the dosage on the Dacogen web page. He indicated that my hematologist is following their protocol (MD Anderson) which they think is better than the FDA approved dose on the web page.

Just finished my 1st 5 day round last Friday with this experience: The 1st 3 days I felt really peppy due to the steroid I had as a premed.
By Friday I experienced stomach problems with excess gas that continued into Saturday and Sunday. Saw my Doc on Monday and he thought the steroid had irritated my stomach. My CBC on Monday showed my WBC dropped from 43 to 11, my HGB was down to 9.2 from 9.8 and PLT was up from 33 to 50. (Values are just before and after dacogen, the nadir is expected to be next Monday or 2 weeks from starting dacogen.) Have been easily tired so far this week and need a bit of time to recover the dacogen effects.
Hope this helps,
Russ

[LuAnn]

Thank you for the info Russ. Dad is having final treatment of first round tomorrow. HGB went from 9.1 Monday to 8.4 Wed. He will probably need 2 units on Sat. Platelets went up which surprised me because I was told they would go down. I hope this works for both you and mydad with little side effects. Many prayers… LuAnn…

[jaxem]

hey, russ, for what it’s worth
i went through the math and found that the MD Anderson regimen infuses about 25% less dacogen than the manufacturer’s recommended dose. I’m not sure what that means & was concerned about it so I asked my wife’s hematologist. He said that it was hard to say what is the best regimen but the Anderson regimen was based upon a trial and it yielded about the same results as the manufacturer’s trials. My wife went with the manufacturer’s regimen on 1st round but went with the Anderson regimen with the past 5 rounds.

[Russ P.]

Jack, the nurse giving the IV said I was getting less Dacogen and they used a standard amount rather than a by weight basis.

LuAnn, note that my platelets went up also. We’ll see what I get next Monday which should be the nadir. I suspect I’ll be due for a PRBC tx next week as it has been over a month since my last one. Also I was encouraged that my peripheral blasts were only 13% as they had been running over 40%. After one rd it’s too early to tell how it’s going. Hoping that I am prolonging life and not prolonging death.

Prayers for your father, LuAnn. Also for your wife, Jack.
Russ

[Author]

Posts