Decitibine (Dacogen)

[JaniceR]

My dad has RAEB (high risk). He was on the clinical trial at NYP arsenic and ara-c. It helped, but not enough. He has the dreaded chromosome 7 abnormality. He is starting Decitibine this coming Monday. 5-days on, administered through IV (for one-hour) as an outpatient, and then three weeks off, etc. We are hoping and praying that this is the answer. It was just FDA approved last week! His fingers were left numb, tingly, and cold from the arsenic chemo. We’ve heard vitamin B-6 will help this. Does anyone know how much to take, how many milligrams a day? And… does it indeed help?

[patti]

Janice,

I don’t know what milligram amount of B6 will help but I do know that they recommend the b vitamins not be taken alone because they work synergistically. You might just give him a B complex vitamin and that should give him what he needs. Can’t overdose on B vitamins. What his body doesn’t use will just turn his urine bright yellow.

patti

[kristyk]

Hi Janice
If you have read any of my posts my mom has been doing the dectibine, exactly as they plan for yor dad for 7 months. she has AML though. I will say things have gone well, except for that just in the last few months the white and platelets have been very low. Platelets down to 5 yesterday so she needed to get some. I am concerned. However the chemo does not make her feel sick in anyway. She has felt quite good despite everything. So i wish you all luck. You are the only other to post about doing this treatment. I will be curious to see how it goes. Please share as you learn more and have some experience with this. I am hopeful.
Kristy

[lynette]

Hi Janice,
My Mom has neuropathy from the Arsenic. It is particularly worse in her feet. Her fingers are slightly affected, however she is still able to knit! The usual recommended dose for B6 is 50mg three times a day. The B6 has slowed the progression, but has not eliminated what was already present.
I’m hoping that your Dad does well on the Decitibine.
Lynette

[JaniceR]

thanks patti, kristy and lynette… I’ll keep you posted as to how the decitibine works and if the B-6 helps him at all.

[JaniceR]

So now… the Dr. at Morristown Memorial is saying they can’t get Decitabine in time for him to start on Monday; yet it’s available at Hackensack on a clinical trial. I don’t understand why my father just can’t start his treatment at Hackensack and when it comes available in Morristown transfer over. It’s been FDA approved so what’s the problem? We met a doctor from Hackensack last weekend and he said all the area hospitals work so closely together, they help each other out. So the Dr. from Morristown can’t borrow some from Hackensack and replace it when they get it in?

[kristyk]

Janice
yikes, sounds like a bit of a mess. Hopefully Morristown can get it soon. I do know that drugs used in clinical trials, well everything has to follow protocol of the study, very regimented. Still with the FDA approval one would think access would be easier..I’m sure it will be. Good Lick
Kristy

[JaniceR]

Kristy: Your mom transformed to AML this past November? What was her blast percentage? I think my Dad’s Dr. is not telling us that he has transformed. When I read his BMB it said 30-40% blasts and something about leukemia. All’s the doctor said was that his last BMB showed more leukemic cells and “some” dysplasia. When I asked if the Trisenox and Ara-C treatment worked “any” that he received from NYP, he just said “yeah, somewhat.” Now, having read the technical mumbo-jumbo on his BMB, leads me to believe he now has AML and I’m wondering… shouldn’t it be a mad rush to get him intense treatment right away? How is your mother making out on the Decitibine? I’m encouraged hearing that she is being treated with that drug after having transformed to AML, so I guess we’re doing the right thing … but so worried.

[kristyk]

Janice
When my mom progressed she had something like 30% blasts in marrow. 20 or 30 is the criteria for AML, can’t seem to remember which. She too was initally Dx with RAEB MDS. They said she would progress within the year and she did 9 months after diagnosis. It seems when it did progress it did so very quickly, things changed in a weeks time. Anyway, yes when that AML was confirmed she was in treatment the next week. But then they had been waiting for her to transform to start the decitibine as the study was for AML. So we knew months before that she would do the trial as soon as the blast met criteria for AML. She has done really well all things considered. She is pretty active. We went to texas for a week. She does her running around. 2 months ago the BMB showed something like 4 or 5% blasts..that sounds better. She has had trouble though since that last BMB ( 2 months ago)with the low white and platelets. She just had another BMB yesterday and will know results next week. Of course the hope is that it still shows major decrease in leukemia/blasts. I hope. I will let you know. Thrilled this drug has been approved. I sure hope that your dad has an opportunity to give it a try…soon.
Kristy

[JaniceR]

Kristy: Wow that’s sounds encouraging that she went down to 5% blasts! And.. that she’s been able to travel. That’s a big thing right now. My father LIVES for the summer and wants to go travelling. The doctors said to go ahead and plan a couple of trips and that they would work his treatment around the trips. I sure hope they get the decitabine soon. It’s suppose to be coming in the end of May, so we’ll see. I hope your mom has good results with this last bmb… I’ll be thinking of you.
Janice

[lynette]

Hi Janice and Kristy,
I asked the docs at NYP about Decitibine as maintenance instead of the Arsenic and ARA-C. Right now, the ARA-C is working well for Mom, so he didn’t want to switch. Also, Decitibine has only been approved for MDS, not AML. Therefore, if one has developed AML, he/she must be part of a clinical trial as insurance will not pay for the Decitibine if it is prescribed “off label” for AML. Janice, it’s interesting w/ your Dad. His blasts cells would meet the criteria for AML, however, if he is able to receive it at a local hosptial(not part of a trial), he probably still had MDS.
Good luck with the new medicine–I’m hoping that it helps and he has a great summer!
Lynette

[JaniceR]

Hi Lynette: Good to hear from you! I sure hope our doctor realizes this. I talked to Dr. Feldman on Fri. and he said not to get hung-up on what the bmb says and the percentage of blasts. And that as long as he feels good, looks good and his transfusions are not getting any closer together, that it’s okay to just wait for the Decitabine to come in. So..I’m thinking it’s not classified as AML (yet)… or they don’t know that it’s only approved for MDS and that it’s not approved for AML. Boy, I sure hope they are up on their research and know what they are doing/talking about. Otherwise, we could be sitting and waiting for this drug and when it comes in finally, he won’t be able to take it. And then we’re back scrambling to look for a clinical trial he could get into. I spoke to Hackensack and they said it’s scheduled to be delivered in two weeks… I’m hoping that’s the case with Morristown as well. Regards to your mom (hope she had a great mother’s day) and I’m happy the ara-c is working!
Janice

[marlene]

Janice,

My husband ended up with peripheral neuropathy also. Here’s a really good link for you to look at. Check out the “stickies” Lots of good info on vitamins, amounts and other strategies for PN.

http://brain.hastypastry.net/forums/forumdisplay.php?f=206

The specific B vitamins for PN are: B1, B12 (sub-lingual methly form 1000mcg), B6 (p5p form preferred, 50 mg.) Add in Omega oils (fish,flax seed oil), ALC (Acetyl Carnatine (sp)good for toxic induced PN), and a good calcium/magnesium suppl.

Marlene

[JaniceR]

Marlene: Thank you for all the info!
Janice

[SRMaven]

VIDAZA vs.DACOGEN?
Hi out there. I have been diagnosed with MDS (RA) only since last August (2005). I have had 6 transfusions which only boost my Hmg to Max 10.5. I had just about convinced myself to start on the VIDAZA program. But now I see that another drug DACOGEN has just been FDA approved.
If I have a choice, which would be better?
Any insights would be appreciated.

[Author]

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