Dacogen, 'my wonder drug'

[kgtuck]

Today marks 5 years of success with Dacogen. My blood counts continue to be well within normal limits (except for the wbc bumping up and down due to the treatments)! My diagnosis was MDS refractory anemia, RAEB II, with 10% blasts and no chromosome abnormalities.

I hope my celebration will give others encouragement who are just being diagnosed and/or beginning treatments. Because this drug (& Vidaza) are methyltransferase inhibitors, the side effects are very minimal. And, if transplant isn't an option, these drugs can give us hope for a normal life for years!

[Neil Cuadra]

Congratulations! Since Dacogen has been FDA-approved for MDS treatment for only 8 years, you've one of the pioneers in proving its value and demonstrating its success.

[Birgitta-A]

Wonderful kgtuck !
Kind regards
Birgitta-A

[bailie]

That is very interesting. I was diagnosed RAEB-2 in November 2013. I have been feeling totally normal (which isn't unusual) since my 2nd cycle of Vidaza. All of my blood counts are in the normal range except a couple on the border of normal. That is the dilemma. Does a person continue on Vidaza until it crashes or does a person go into transplant while feeling great and healthy? If Vidaza would continue working for years it would be tempting, but it is hard to guess about the future.

[kgtuck]

That is a very difficult decision. For me, 5 years ago, only a mini transplant was offered (if you were over 60 yrs.), but now I have read that transplants are done on much older individuals. The more education about the disease and treatments options helps a bit in your decision. I decided to try the drug first and had such a quick and good response, I chose continuing with it and hoping that a new drug, combination, or another way of attacking MDS, etc. would come along in the future. Basically, tho, I just went with my "gut" feeling!

Hope you continue to do well!!

[Whizbang]

bailie,

I was 100% in complete remission after 2 rounds of Dacogen (I felt better then than I had in over a year)... My doctor said I could have easily seen 2 years of good response... But as she (my doctor) said, you have to strike while the anvil is hot... Everything was perfectly lined up: donor, insurance, work, good health...

In the end no one has a crystal ball, but 1st complete remission is the best case scenario for treatment of this disease (with BMT/SCT), and increases the chance of success, and lowers risk of relapse....

Realize that this is all from my perspective, you have to make the choices that are right for your situation...

All the best, and God Bless,
David

Originally Posted by bailie

That is very interesting. I was diagnosed RAEB-2 in November 2013. I have been feeling totally normal (which isn't unusual) since my 2nd cycle of Vidaza. All of my blood counts are in the normal range except a couple on the border of normal. That is the dilemma. Does a person continue on Vidaza until it crashes or does a person go into transplant while feeling great and healthy? If Vidaza would continue working for years it would be tempting, but it is hard to guess about the future.

[bailie]

I appreciate your comments. It is a tough decision. The element of age and donors has made it difficult for me. If I had three or four donors lined up I would be tempted to play out the string longer and then go to transplant. But, I am a very difficult match and the two matches I have are both international. I am planning to go ahead with the transplant and give it my best shot. Another important part of this is my blast count. I will have a BMB in a couple of weeks. If the blast count is still elevated it could affect the timing of the transplant. I am still wondering how my blood counts could improve so much without affecting my blast count. Hopefully I will see movement in the blast count with the next BMB.

[sbk007]

KGTUK - Congrats! - hope you get 50 more.

Baile, The people that work with these Drugs everyday don't know why some people have complete responses, some have partial, and some have complete marrow responses. Why the blood and blasts behave differently is a mystery. This is why some researchers look for markers that might indicate or predict what subset of people will respond to these drugs. From what I read the doctors use a flow chart. If some key chromosomes are bad like monosomy 7 it's an instant referral for a transplant. Statistically some subtypes just have a habit of progressing faster. The duration of response is also unknown. They have averages but there are subclasses (very small) were people defy the averages and are able to go many years on these drugs. From all the literature I've read both Dacogen and Vidaza stop working after a while. They've done studies on very large test cases and they just stop working. Having normal cytogenics is certainly a positive. Remissions are also puzzling to researchers. I think a remission means that after taking the drugs a BMB shows normal cytogenetics and less than 5 % blasts. Unfortunately remission tends to not last very long so if going for transplant its the best response you can get but certainly not a deal breaker.
Hope that helps.

[rar]

In less than 6 months I went from a very minor pre-MDS to MDS-RAEB-2. I am on a clinical trial for AG221 which reduced my blasts from 13% to 3%. ANC .2, Platelets 36, Hemoglobin 10.1. The doctors were not expecting the CBC numbers to improve.

I have had the opinions of 5 doctors. They all agree that my MDS came on rapidly so relapse would likely be fast also. Even the clinical trial doctor who's vested interest to keep me on the experimental drug all agree I should have a transplant soon. I mentioned people who have been in remission for years. They say that is highly unlikely for me. They say that for me remission from any drug would be in the 3 month range.

Yesterday I have a pre-transplant physical and mental exam. I passed so the transplant will be in a couple of weeks. It was a tough decision. As I see it, it was the only decision for me. The betting odds among the doctors are a 30 to 50% chance of near normal longevity. I am 73 and healthy. It is too early for me to give up.

Ray

[Diana C.]

My husband was diagnosed just a cupola weeks ago with MDS. He has been very ill and has had 5 transfusions in the last week and a half. His blood counts and other health issues has complicated getting him stable enough for treatment. He was to start decogen today but his kidneys are not functioning properly. His creatin level is at 3.5 today. Just curious if any one else has experienced these complications. He has been in the hospital for a month except for 5 days and the last time home was here a day before he went back by ambulance. He has been running temps everyday. The plan of treatment is 2 cycles of five days on and 2 days off then I time per month. What can we expect. This is really scary!

Thank you Diana

[johnwc]

I've had five cycles of Dacogen and blood numbers have return to near normal. BUT,,, I had a biopsy and blasts have increased from 5% to 8% and doc wants me to revisit the transplant team. I have CMML and 67, healthy male.

What have you been told the odds are of a MINI?

Have your blood numbers improved but NOT the marrow??

Insights please..........

John from Portland

[bailie]

John,
It is a tough decision. I am feeling no symptoms (and never have) and I have a stem cell transplant scheduled for August 14th at OHSU. It would be tempting to see how long the Vidaza works without getting the SCT, but there is a donor available now. I am a difficult match.

The strange thing will be going into the transplant feeling totally normal. I worked an 11 hour day yesterday.

[johnwc]

did you get my private message??

[bailie]

Yes, I just replied.

[sbk007]

Jonwc,
A lot of people on here have had "mini". It just means the conditioning regimen before they put the stem cells in is less intensive. The idea is to kill your marrow as best they can so as to get the diseased cells and to avoid relapse and to reduce the strain/shock to the body. I don't know the exact trigger that separates mini from not mini, but a lot of these outcomes that we see come from different people with different subtypes. Some may have really bad chromosomal problems that regardless of what you do puts them at high risk post transplant. CMML is a different disease type and that group seems to do better post BMT than many other disease types.

[MaryS]

Originally Posted by kgtuck

Today marks 5 years of success with Dacogen. My blood counts continue to be well within normal limits (except for the wbc bumping up and down due to the treatments)! My diagnosis was MDS refractory anemia, RAEB II, with 10% blasts and no chromosome abnormalities.

I hope my celebration will give others encouragement who are just being diagnosed and/or beginning treatments. Because this drug (& Vidaza) are methyltransferase inhibitors, the side effects are very minimal. And, if transplant isn't an option, these drugs can give us hope for a normal life for years!

Hi Kgtuck,

I am so glad to hear of your success. Dacogen is helping my dad also.
Although I have a question for you. My dad is coming up on his 6 cycle
Of dacogen. Between Day 14-20 his counts go down and he usually needs a blood transfusion or two and sometimes platlets . His counts bounce back nicely and look great. He never feels that great. I heard that around the 5-6 cycle it gets better. Are you transfusion dependant monthly too and have you ever been. On the 14 day my dad's hct drops to 7.6 sometimes it still is dropping on the 17 day. I was hoping that he would level off, and that he would not need blood transfusions anymore. Where were you on your 5th cycle? Any feedback would be appreciated)
I am glad for you👍


Mary