Dacogen/Decitibine

[Dennis]

Anyone with experience or information on Dacogen/Decitibine and it’s affectiveness? How long to response? What’s it do to counts? Seems like vidaza gave up on me. My counts went down and are continuing down.

Dennis

[lucym]

Dennis,
My Mom has refractory AML nothing has been able to put her in remission. She had 5 days of decitabine starting June 23. She is off for 28 days. For the past 7 days my Mom has needed 4 pints of rb and 3 plt tx. Today 9 days after finishing treatment she did not need a tx. Her HGB was 11.5 and plt 24 (sounds low but very very good for my Mom). Mom has been suffering with diarrehea but that has subsided in the last 48 hours and she is getting her strength back. I asked the doctor about blasts in her blood today (they were 89% 9 days ago) and his reply was with this type of chemo he does not expect anything to happen until after 2nd cycle and that is consistant with what the press release says. He also gave her a shot of procrit hoping she will make more Red Blood cells to hold off further blood tx. My Mom has always had plt issues, 5 days ago they were 3, she received a tx from my sister and they went up to 60 but two days later were down to 15, got more plt and today 24. We take one day at a time and we have had 2 good days in a row so we are most happy.
Hope the information is helpful, all the best
Lucy

[Bkwits]

Lucy,
My thoughts and prayers will be with you and your Mom. I know that it’s a very scary time for you and your family. Take care of yourself.
Barb

[Terri]

Dennis when we asked our Doctors about it since Bob is on vidaza as well he said it is in the same family but with Stronger and harder side effects. He did not want to change Bobs treatment, That was before the brain bleed and his whites goint to 45. He is going to watch Bob carefully see how the vidaza continues.

Oh by the way you do know that the company has the drug into the FDA for IV use. it would be the same treatement/cycles but IV instead of the shots. Its for giving patients an option on how it is administered, nothing as far as working any better or worse.

[Dennis]

The issue for me is not the administration — oh, I hate the needles — but that it apparently stopped working.

D

[JaniceR]

Dennis – My dad had two rounds of Dacogen so far. The only side effect that he’s experiencing is constipation and tingling in his feet and legs somewhat. During (and the week after) round one, he needed to get platelets and blood more often. By week three, his counts starting coming up on their own, but then week four is chemo again, so they went down. The week after he finished round two, he went on vacation to the beach for a week and had a great time. He had his blood tested after vacation and needed to get platelets and redblood, but the numbers did not go down as drastically as after round one. He’s off for a week and then taking another vacation (out west) for a week, and when he gets back, they will start him with round three. He still looks and feels great, with the exception of getting tired a little quicker than normal. They will do a bmb after round four, sometime in September. He also gets a shot of Neulasta once a month (the day after his chemo round).

[sdrake]

Dennis,

My dad has been on Vidaza since 02/05. His white count gets really low in between rounds. Treatment has been delayed several times due to his ANC being so low. It seems that then his red count and hgb take a dive as well. He has required two transfusions in since he has been on Vidaza. When his ANC gets back to where he can start his shots again, his rbc and hgb come back up as well. The first time this happened I was afraid the Vidaza had stopped working, but it hadn’t. I guess I’m wondering if you are sure the Vidaza has stopped working for you?

Shari

[Dennis]

How long does it take for them to recover?

The last time this happened, they did a new BMB and it showed improvement over the original. But then we went to 6-week cycles, and either they never recovered, or something. Probably going to wind up with another BMB here if something doesn’t happen.

D

[sdrake]

Dad’s counts usually recovered fairly quickly once the next round of Vidaza was started. That is – his rbc and hgb went back up. It is always hard on his wbc.

We are trying to decide if Dad should try Revlimid. It does appear that the Vidaza isn’t working as well as it did, but it is still helping. Dad has the 5q deletion, so we are hoping Revlimid will work even better for him. He just had a BMB done last Friday, and we are waiting on the results of that to decide the next step.

Take care,
Shari

[KWJ]

Dennis – my dad was on vidaza as well, 3 rounds. Counts went down after the 1st but then came back up, next 2 doses only had 1/2 dose because his counts were so bad. Got nuepren shots, which helped his WBC but then he got sweets syndrome. Doc said Vidaza not working…MBM showed 13% blasts as opposed to 5% at his DX 2-06. Now they are gonna try Dacogen. He is transfusion dependent and his WBc is at .9. We are praying this new drug works. Wish we could do nupregen again but Doc is afraid it will bring sweets backs. Stuck between a rock and hard place.

Best wishes to you. You will have to post how you are doing on this new drug too.

[Dennis]

Jury’s still out on the next step.

My personal leaning is to go for the BMT rather than more drugs. I have an incredibly complex karotype and my Onc doesn’t think existing drugs are going to give me any long-term results. I see the transplant doc again next month. I’d just as soon get the transplant and get on the way to a cure, rather than experimenting with drugs that while if they work, work great for as long as they work. The transplant has a 24 % mortality, and there will be residual affects — but what the heck, right now I have MDS with all three lines depressed and a complex karotype — that puts me at almost as poor a prognosis score as you can get. Even with treatments, which are not without their risks and side affects, I may only be looking at 3-5 years, of less-than-healthy life. Seems like a worthwhile risk to me.

D

[maueenh]

Dennis,

How long did the Vidaza work for you?
Maureen

[Dennis]

First cycle was 8/12/05
Last one ended 5/24/06

Been “barefootin'” it ever since, count continue to decline. Had my first unit of platelets last Friday.

I had a great response initially, but I guess the weird genetics won out.

D

[Terri]

Dennis When Bob was first on the Vidaza this second time around they did the regular schedule and his counts started coming back and stayed pretty good for some time, Doctor decided to try and spread the sessions out as well to every six weeks and It did not work at all on Bob, The doctor saw cells in on the slides that he did not like and put us back on the regular cycle. He was doing well up until the brain bleed and then he got off the cycle again. Doctor which we just saw feels that once bob gets on the cycle again with NO interruptions his counts should get back to where they were HGB were close to 11 Rds normal and Whites around 19. Now his whites are skyrocketing but He has good neutrophils so not AML Doc still thinks Vidaza is responding for Bob.
You may want to try it again but the shorter cycle.
Good Luck, prayers are with you.

[lucym]

Dennis,
My Mom started her 2nd round of decitbine today. Her Onc had asked us if we wanted to try Vidaza instead, he felt they were the same medication just in different forms. I called both Pharma company’s today and they both said they are the same type of treatment, both are DNA agents working to get the correct DNA cells that have been dormant during disease working again. You may want to try it, you should know within about 8 weeks if it is working. I understand what you are saying about even if it works for how long? But if you look at the last year or so 3 drugs have come out for MDS. If the decitbine works for 12 months who knows what drugs they will come out with in that time. Just a thought. All the best, Lucy

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