dacogen questions?

[annie-anne]

Dx 2001…Rx started with dacogen Jan.2007,have had 13, 5 day rounds. Jan.2008, bmb “normal”. Dacogen routine changed to five weeks between rounds, resulting in two additional rounds, I’m thankful for a normal BMB, however, my labs are worse than ever. I’m due to start another dac round Mar. 31, but past three mos have been a concern, neutropenia, x2, platelet transfusion, lo hbg. etc. Has anyone had any similar experience, that is, receiving dacogen after a “normal BMB? What is research showing re: dacogen use long-term? Thanx for any help.

[jaxem]

annie
what do you mean by “normal” bmb? blasts =0? no displastic cells?
my wife started her 1st 6 rounds of “straight” dagogen about the end of 2006, & she’s just finishing 3 rounds of dacogen w/ valproic acid now. all during this time her cbc’s have been way below normal because of the dacogen. in the 4 or so bmb’s she’s had during this time, her marrow still showed blasts (although reduced) & displastic cells (although changed from one type to another).
I’m thinking that the dacogen is doing its job for you with the side effect of cytopenia. if you stopped the dacogen, chances are you’d go back to your original condition. no reason why dacogen can’t be used long term. many patients are on it long term.

[Mary4Mike]

Annie,

I am confused. When you said your Dacogen routine was changed to 5 weeks between rounds, which resulted in 2 additional rounds, are you saying that it was given less often before? What was your original cycling? If you had a “normal” BMB, why did they shorten the time between dosing?

If you go to MD Anderson’s site and read about their trials with Dacogen, they say that you stay on it as long as it is “working” meaning you are TX free. Like all of the other MDS treatments, you take it until it no longer keeps you off TXs.

Did you experience cytopenia at all during the first year of Dacogen? I am curious as to why they stepped up your cycles. Can you explain this?

I am thrilled to hear you had good results, at least for the first year. Let us know, how it is going with you.

Take care,

[jaxem]

mary
if you are on dacogen, you’ll never be transfusion free. you’ll always be needing blood products to supplement the good cells dacogen destroys. it’s “working” if it keeps blasts & displastic cells at a minimum.

[annie-anne]

Mary4mike, /Jaxem
Sorry I confused you. I started Dac with a 5 day IV treatment on, with three weeks off, “round” from Jan,07-Jan 7, 08 ..The Dec. holidays increased that last round to four weeks in between.(Approx 12 rounds) I was feeling great. Meantime I had a routine BMB Jan 04,08 @ Vanderbilt and rec’d “Normal” test results 2 weeks later: That is, all three lines were normal, no increase in blasts was noted four times, and my Impression stated: Normal female Karyotype.!! Dr. K called me from Vandy personally to tell me, and then called my local. They decided to extend the three week interval between Dacogen Rx to five weeks, as my weekly labs were not yet normal, and frankly were not good. My next round of Dac was FEB 18, 5 weeks after the Jan 7 round, and I’m due to start another round Mar. 31. I am assuming my blood has to catch up, but it’s been almost 3 months, and I really feel lousy. I know I’ll prob. be on Dac forever, but the labs have been low, and supportive Rx have not been fun. I am thinking some sort of research would indicate a ?? lower dose, more time beteen, or whatever. It’s good to have nornal on a report tho, I’m not complaining. This year, I have had three serious bouts of Neutropenia,(a part of cytopenia )where the Neutrophils collect in various parts of the body. Mine was fever-free, but painful. The Dr. does give me antibiotics per protocol when the neutrophil or wbc drops below a certain point. I’ve also had lots of supportive transfusions etc. Don’t give up, I’m 74, and still fighting with a 5q9 RAEB diagnosis. Hope this helps.
Jaxem,
What does Valproic acid do to Dac. infusion, maybe that would help me? Must read up on it.
Good luck,
Annie-annie

[jaxem]

annie
valproic acid is an HDAC inhibitor that is approved for use with dacogen. It tends to make dacogen stick around longer in the body. It is actually an older drug meant for mental patients & its dosage is the maximum permitted for these patients. there are other hdac inhibitors being tested such as MGCD0103 & vorinostat that show promise but are still in trial. there was another one that was approved but suddenly removed from the market which i don’t know the reason. my wife is scheduled for a bmb this week so we’ll know if the combo succumbed the beast blasts. Ill tell you one thing, this combo is tough on the GI track and causes a lot of fatigue.

[Mary4Mike]

Jack,

Our prayers are with you and your wife this week. We pray that you get the results that you are looking for and that things can move forward for the two of you with positive results.

Mary and Mike

[Mary4Mike]

Jack,

Mike had an appointment with his hemo on Wednesday. I asked her what constitutes that the Dacogen is working. She said that it is working if you are TX free…..that is the goal. She had recently been to a symposium on Dacogen given by Dr. Anastasios Raptis from the Univ. of PA – Hillman Cancer Center. He said that it has been necessary for doctors to alter the cycles of Dacogen (ie lengthen the time between dosing) because of neutropenia/cytopenia. He did say, however, that there is no data YET about reducing the doseages because of severe reactions, but there will be since doctors are doing it.

I just thought you’d be interested in another opinion. This was from our doctor here in Florida. We are heading back to Michigan this weekend and have an appointment on Monday with our hemo there. I will ask him his thoughts on his definition of “working”. By the way, Mike will be beginning his 4th round of Dacogen on Monday, at a reduced rate. His 3rd round was also at a 25% reduced dose. Since beginning Dacogen, Mike has lost 20 pounds, so we will ask the doc to recalculate the dose. Also, it will have been 7 weeks since his last cycle, due to severe neutropenia/cytopenia and being hospitalized with pneumonia. He also had a fever for over 3 weeks. He is on the mend now, and his counts have been holding this past week. Apparently his bone marrow has responded a bit. It has been over 2 weeks since a TX and his HGB is at 10.9 and the others in the normal range.

Please keep us up to date on your wife’s BMB. We are praying for her.

[jaxem]

hi, mary
Hillman is part of Univ. of Pittsburgh, not Univ. PA. Abramson Cancer Center is part of Univ. PA.

With all due respect to the docs, as long as you are taking dacogen, you are not going to be transfusion free. if dacogen is working, a bmb will show healthy marrow with minimal blasts & displastic cells. once removed from the dacogen, the body should recover and start building healthy cells and keep the marrow healthy. personally, I don’t think dacogen or any other treatment should be altered (dosage strength or period between rounds) from the trials unless the health of the patient is in serious jeopardy. reduced blood counts can be shored up with blood products.

my wife had her bmb on monday & manual counts done on tuesday showed the dacogen/valproic acid combo not working any longer. her blasts have increased from 8 to 15%. she is going into the hospital today to start clofarabine treatment.

[Mary4Mike]

Hello Jack,

I am so sorry to hear that the Dacogen/valproic acid is no longer working for your wife. Hopefully the Clofarabine will be the answer. How long will she have to be in the hospital and how is it administered? Is this part of a clinical study?

All the best to her and you,

[annie-anne]

Hi Jack, Mary,
We were so sorry to hear your news, Jack, re: the Dacogen Rx. Hopefully the new Rx will take hold. My experience last Monday was interesting. Dr. put off the next Dacogen for two more weeks, while I recover?? that means seven weeks since the last Rx. Gave me an Aranasp, and talked about changing the amt or the no. of days he would do next Dacogen round, probably three days. I have made an appt. with Doc @ Vandy for more info. on Apr. 10., and am feeling a little better, maybe my hbg. at 9.1 on Mon. is up a little. I seems like there are is a lot of research going on all over the country. I am tecnically on the MDAnderson Protocol, What are your Drs following, Jaxem, or Mary?
Mary, I have had over 75 IV’s of Dacogen, during the 14 rounds, I was so ill @ first, but the dacogen did take hold after about 6-7 rounds,along with about 12 packed cells transfusions. Fortunately, I did not take much ex-jade, as my ferratin was pretty low. I did not like ex-jade. Maybe this Dacogen Rx will do the trick, for Mike. We are all so different.
Good Luck, and our thoughts are with you both, in these new Rxs.
Annie

[Mary4Mike]

Annie,
It is encouraging to hear that after a rough start on the Dacogen, it did begin to help you. That has been Mike’s experience. He begins his 4th round of Dacogen tomorrow. That makes 7 weeks for him since his last round also. It made him extremely sick. He has been hospitalized with each round as I stated in my above post. He received several TXs with each round. His last TX was March 17th…..the longest he has gone in awhile. He originally did 5 days of treatment and 4 weeks off. He also had his doseage lowered by 25% as I also explained above. Mike has had over 60 units of blood since beginning TXs and his ferritin is around 3600. He has taken Exjade and it lowered it, but then he needed blood more often and he couldn’t keep ahead of it. He is currently off Exjade because of his kidney counts being high. He will begin again at a lowered dose.

Yes, everyone seems to have a different story as far as their response to treatment. Let me know what you hear from the doc @ Vandy and if you get started again on Dacogen and how they altered your regimen.

Take care,

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