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Dacogen w/Valproic Acid

This topic has 8 replies, 1 voice, and was last updated 16 years, 10 months ago by JaniceR.

Viewing 9 posts - 1 through 9 (of 9 total)

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June 7, 2007 at 6:58 pm #18496

JaniceR
Member

Hello All: It’s been awhile since I last posted. Thought this might help someone/anyone. My father was on Dacogen since last May. His BMB in December came back with really bad news… the Dacogen was not working and his blasts increased. We went to see Dr. Goldberg in Hackensack Medical. He consulted with our Doctor in Morristown and they came up with trying Dacogen w/Valproic Acid as sort of a last stage effort to help. His other option was full induction chemo, which would be far too taxing on him. He’s been on the Dacogen with the Valproic Acid for three rounds and just got his BMB results. His blasts are now significantly down. From like 80% down to 12%. This combo wipes him out a bit more and also wipes out his counts for a longer period of time, but when the counts come back.. they really come back on their own. They decided to hold off a little longer now inbetween rounds to give his counts time to recover so as not to need so many tx. After chemo he needs tx TWICE a week until they start to recover. He is now in the hospital because of a fungal pneumonia, but his platelets and red blood are holding. He also got an abcess/cyst on his butt that had to be lanced and drained. Now, if he could only get out of there we can enjoy the good BMB news!

Maybe some of you that have tried Dacogen to no avail can mention this combo to your doctor and it might help you as well. Here’s hoping!

Janice

June 7, 2007 at 9:10 pm #18497

lynette
Member

Janice,
I have been thinking of you and your Dad. I am VERY happy to hear that his blasts dropped so dramatically!! I hope that he is discharged soon!
Take care
Lynette

June 8, 2007 at 2:20 pm #18498

JaniceR
Member

Hi Lynette!
They are discharging him from the hospital this morning! Yay! Happy Summer!
It was great to hear from you. Hope you and your Dad are well.
Janice

June 8, 2007 at 5:17 pm #18499

maueenh
Participant

Janice,

That is great news. Thanks for sharing the dacogen combo, I will mention it to my dad’s doctor.

Maureen

June 9, 2007 at 1:05 pm #18500

Russ P.
Member

Janice,
Thanks for sharing the new treatment – I also was on Dacogen until my MDS went into AML (30% blasts).
Could you supply some detail on this? Is it a clinical trial and if not does Medicare cover cost of drugs? You can e-mail me at: ripoole@yahoo.com
Thanks,
Russ

June 11, 2007 at 2:32 pm #18501

JaniceR
Member

Hi:
I just heard that the Valproic Acid added to the Dacogen treatment keeps the chemo in your system longer thereby giving it more of a chance to work… slowly. Valproic Acid is a drug used to treat people with epilepsy. Regardless, our doc is thrilled that it actually reduced his blasts since the Dacogen alone was only “holding them at bay.” He goes to the doctor today, so maybe he’ll have more info. for anyone who is interested. He’s still having trouble with the fungal infection in his lungs… if anyone has any advice or info. on that, please let me know. It’s probably due to all the different antibiotics he takes on account of his counts being lowered by his treatment. Or maybe because they live in a flood zone next to a swamp. I don’t know, but it’s making me very nervous that it’s not getting better yet.
Thanks,
Janice

June 13, 2007 at 4:47 am #18502

jaxem
Member

janice
interesting topic. you say your dad was on dacogen since 5/06 @ Presby. & started dacogen + for 3 more rounds which should be around beginning of 3/07 & Hackensack. how many rounds did he have at Presby? were the rounds given consecutively every 6 weeks because that’s about 6-7 rounds? BMB’s in-between show uphill ramp in blast counts? with the amount of lawyers in this country (& especially in NJ), I’m surprised that Hackensack would gin up something without an approved trial. whatever, i’m truly ecstatic that it’s working for your dad. best of luck to him.

June 13, 2007 at 2:17 pm #18503

Russ P.
Member

Janice,
I presume you saw my e-mail and reply from Dr. Goldberg. He’s got to be a great doc to bother helping others without compensation. Thanks for the lead.
Russ

June 15, 2007 at 4:37 pm #18504

JaniceR
Member

Jack – He was at NYP in Feb. 06 for two rounds of clinical trial. BMB in May 06 came back showing increased blasts. May 06 went on just Dacogen. BMB in December came back with NO decrease. Started Dacogen with Valproic Acid in Feb. 07. Not a clinical trial, but it is approved. Looks like it’s helping because his blasts have DECREASED!
Russ – YES! I did get your email and that’s great that he replied… and I like his advice to you! Best of luck and keep me posted.
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