Starting Dacogen

[seniorrico]

I am scheduled to start Dacogen this coming Monday. Does anyone have any experience with this drug? I know it's new but I would appreciate hearing from anyone who is on this drug.
Warren Dx RAEB DxFeb. 2006

[Albert Seufert]

I have had 11 cycles of Dacogen and have tolerated them very well. No adverse side affects. The first 7 cycles were spaced every 4 weeks. Now trying to lengthen the time to 8 weeks. Still need RBCs between cycles. Platelets drop to 10 or below and then recover to between 30 and 60. My white count drops to 1.5 and then slowly recovers to about 3. My blasts were 9% and are now 0. ANC has been 0 but now ranges between 350 and 1500. I view Dacogen as a maintenance drug and as such it is performing as well as can be expected.

[seniorrico]

Albert,
After the first cycle my platelets dropped to 20000 but recovered to 66000. My neuts started around 1.0 the have dropped to 0.4-0.5. Did the Doctor ever give you any Nuelasta or Nuepogen for low WBC and nuetrofils? I have heard that these can cause you to go to AML? I have completed two cycles.
I asked my Doctor how long Dacogen was effective and he said it is so new we don't know. I talked with a guy out in Idaho that has been on it for seven years but every case is different.
Warren Rich
Dx Feb 2006 RAEB 4%

[knstone]

Warren,
How are you doing on the Dacogen?
Are your counts recovering between sessions?
How much of a drop have you had following the treatment.

Hope you are doing good.

Kirby Stone
RAEB-2 Dx 2/2004
stable on Thalidomide for 32 months,
Will start Revlimid soon.

[Albert Seufert]

Warren:

Responding to your earlier post: no Nuelaster or Nuepogen. Responding to your e-mail relating to dosage: varies dependant on weight. At 170 lbs I receive 38mg.

I was entered in phase III clinical trial for Decitabine. When approved, the trade name given was Dacogen. If you are searching the web for info its best to use both names.

Don't be discouraged by slow results, it takes a long time to see any progress when they repeat every 28 days. I would just start to recover when the cycle resumed.

Al Seufert

[seniorrico]

Starting to see results:
Hemoglobin 12.4
Wbc 1.7
Rbc 3.6
Abs Nuets 0.87
Hct 34.5
Plateletts 242,000 Had to get platelet trans @ 10,000
3rd cycle scheduled week after next
Warren Rich
RAEB Dx Feb 2006

[Linda]

My husband is finishing his first cycle of Dacogen tomorrow. He has been very weak since Monday. He is undergoing this treatment for a few cycles, and if he responds then BMT. He says that if the weakness, queeziness and joint pain is all the side effects that this seems easier to take than the Vidaza. I will be interested to see how he rebounds in between. His Counts are dropping a bit, but not extreem. Platelets 37, neuts 1.0.

[Cookie]

Hello. This is my first post. My husband was diagnosed with MDS in April 2004. A clinical trial of aranesp was available at the time, and he had good results with it. When trial was over, insurance finally gave approval for him to give himself the drug at home (after an unsuccessful series with Procrit). Then after about 6-8 months, its effectiveness gradually wore off. Since last September he has been receiving transfusions about every 2 weeks and HGB is seldom about 9.5 even after 2 units. Tried 4 months on Revlimid with only results being low WBC and platelets. He has just finished his first 5 day treatment of Dacogen and is in the 3 week 'rest' period. He has had no nasty side effects so far with no drop in WBC or platelets. His doctor says she wants to do 4-5 cycles if he tolerates it well. Next 5 day treatment begins June 11. I am glad to find Marrowforums and have already learned a great deal. Thanks. Will try to let you know how he progresses.

[seniorrico]

I finish my 5th day of my 7th cycle tomorrow. My hemoglobin last Monday was 14.2. Needles to say I am happy with Dacogen. I didn't begin to see improvement until towards the end of the 2nd cycle. Call me at 1-910-791-6745 if you want details.
Warren Rich
Wilmington, NC

[Linda]

Bob finished the 5 day cycle on the 18th. He had a transfusion of platelets on the 19th. He has had a very rough week since. He is weaker, and in more pain, ( bone softening? mentioned in side effects.) He has had fevers and flewy feeling. I hope we will be past this soon. Did you have these types of side effects? How does it affect you? He is on a 4 week rest period untill the next cycle. He was on Neupogen this week. No recovery of WBC or neuts yet. neuts are .2, WBC 2.1. platelets 23000. Will get Neulasta tomorrow. Will see if this is any better than Neupogen for Bob.

[seniorrico]

I had Nuelasta after the second round an that helped my Neuts and WBC also, it gave the platelets a boost. I can send you my CBC's through the first 7 cylcles.
Warren Rich
Seniorrico@aol.com

[Linda]

It is good to hear that it helped. Bob used to get Meumega and that helped the platelets but our Doc stopped using it due to the fact that it takes a long time to work, and the cost is prohibitive
Thanks

[Cookie]

WOW! Warren, 14.2 sounds absolutely wonderful to us. So good to hear of your good results. Roger, my husband, has days when he feels so tired, and just plain awful. But other days are better - not sure what causes those bad days. He has bloodwork done every Monday so we are anxious to see tomorow's counts. During the late 50's he was a Navy corpsman stationed at Camp LeJeune and says he spent time in Wilmington and Carolina Beach.

[Linda]

My husband has had 2 cycles of dacogen, due to start third on Monday. He has had a rough time for 2 weeks after the treatment week. It made him have major acid reflux. He couldn't eat for almost 7 days. Started Prevacid, and after about a week it seemed to work. Then cycle 2 treatment and it was almost like he wasn't taking the prevacid. Needless to say he lost weight during these episodes. He also wound up in the hospital for a week, because his WBC and Neuts nearly bottomed out (WBC 0.8). He had Neutropeenic fever, and pneumonia. He has been home now for a week. Felling better.

My question is about the timing of Dacogen. I believe the protocol said 4 weeks off, but Bob has only had 3 weeks off in between treatments. Has any one had it this way?

He has had to have transfusions more too. He has had Whole blood 3 times, and Platelets 5 times. I think this means the Dacogen is working, I just hope he won't have to go through too many more cycles, before he is ready for BMT.

[seniorrico]

Linda,
You mentioned that your husband was starting Dacogen after Viadaza stopped working in preparation for a BMT? Can you tell me a little more about this? I have had 8 cycles of Dacogen. Call me if you can at 910-791-6745. Counts still reasonably good.
Warren Rich
Wilmington, NC

[Linda]

7-24-07
Bob had to skip Dacogen last week and this week. His neuts and platelets were too low last week, but just the platelets this time. He received platelets last Monday and today. He has had 10 tx since 1 June. 3 whole blood and the rest platelets. Wondering what is going on. He was not transfusion dependent until this year.
We are praying for you all. Please continue to pray for Bob.

[AndreaTFTPTF]

Originally Posted by Cookie

WOW! Warren, 14.2 sounds absolutely wonderful to us. So good to hear of your good results. Roger, my husband, has days when he feels so tired, and just plain awful. But other days are better - not sure what causes those bad days. He has bloodwork done every Monday so we are anxious to see tomorow's counts. During the late 50's he was a Navy corpsman stationed at Camp LeJeune and says he spent time in Wilmington and Carolina Beach.

Cookie,

A lot of veterans who were at Lejeune between 1957 and 1987 are coming down with MDS, AA & PNH from being exposed to highly contaminated water in base housing. If you would like to know more, please email me at andreab511254@aol.com or visit my website www.tftptf.com.

[tennisdolly35]

Originally Posted by Albert Seufert

I have had 11 cycles of Dacogen and have tolerated them very well. No adverse side affects. The first 7 cycles were spaced every 4 weeks. Now trying to lengthen the time to 8 weeks. Still need RBCs between cycles. Platelets drop to 10 or below and then recover to between 30 and 60. My white count drops to 1.5 and then slowly recovers to about 3. My blasts were 9% and are now 0. ANC has been 0 but now ranges between 350 and 1500. I view Dacogen as a maintenance drug and as such it is performing as well as can be expected.

How did you decide to go with dacogen instead of Vidaza?

[tennisdolly35]

this is my first time using this program, having problems doing the right thing, I may have listed question several times, sorry. I'm very concerned regarding the reasoning of the decision of choice of dacogen over vidaza and what the symptoms were when your doctor decided now was the time to start? Any guidance would help me. Thank you

[Birgitta-A]

Hi tennisdolly,
You know some patients respond very well to Dacogen , other respond to Vidaza och some do not respond to any of the hypomethylating drugs but do very well with immunemodulators like Revlimid, Thalidomide or Pomalidomide (not approved). Some patients get histone deacetylase inhibitors (HDAC inhibitors) like Epival or Zolinza and get good results.

MDS is not one disease but many diseases and the only thing we really know about responseveness is that about 67% of the patients with isolated 5q- will respond to Revlimid.

Vidaza is supposed to give a little better results than Dacogen - more patients (between 50 and 60%) respond. Here is info about Dacogen:
http://www.mdsbeacon.com/news/2009/0...les-asco-2009/

I am afraid this won't help you but we can only hope that we soon will get better methods for choosing the best drug for every patient.
Kind regards
Birgitta-A

[Mike Conlon]

First off, my Oncologist said we were using Dacogen and I obviously had no reason to question this decision. I just finished my 19th five day cycle. Currently eight weeks off between cycles. At least at Hillman Cancer Center in Pgh. eight weeks is the longest successful off cycle and 40 Mg is the best dosage. I don't want to jinx myself, but I am the longest responding Dacogen patient at Hillman. I just finished my 22nd consecutive month of excellent labs and have been in total remission for almost a year. I have never had a transfusion and my current blasts are 0% down from 14% at dx. At dx I was classified I.P.S.S. Intermediate two. I have had acid reflux issues, Hypoglycemia and sleep apnea. Does Dacogen influence any of these? Don't know.

Go Dacogen, Go Steelers

[ann]

Mike, way to go. You are an inspiration. My husband was dx this year and we hope that his outcome will be as good as yours. He is on Vidaza and is feeling much better with the last treatment. Is scheduled to have the 4th round starting tomorrow. We just keep praying for remission. Keep on moving since its hard to catch a moving target!
ann
Husband - Henry, age 73, MDS dx 6/30/09, congestive heart disease and pulmonary edema

[roger]

This is not a reply but an introduction. I have been in discussion with others re Vadaza for 6 months as that is what I was taking. It did some real ugly things to my body so now Onch is switching me to Decagen. I start this Monday.

I understand people find it easier on the body than Vadaza and I'm glad I no longer have to take those shots in the belly for 7 days. Now my regiment is to be via pic line and for only 5 days. Ah I have my weekends back to surf. Obviously I'm kidding.

I notice several others will be beginning Decagon on or about the same time so if you like we can compare notes and see if we are feeling as expected through out the process.

My doc hasn't told me squat about how long in between cycles nor the progress of my Vadaza treatments and I'm beginning to think he rather i not know.

It seems everyone else remains ontop of their progress or lack of it. Opinions welcome.

I wish us all good luck and the Lord will hold our hands throughout our new journey

[anne&dean]

Roger,

My husband went thru 70 treatments of dacogen, every 4 weeks. He had no side effects with it! There are several people at the treatment center where we go that are taking it with no side effects.

Wish you all the luck in the world and hang in there, hope you have a port if you don't insist that they put one in for you, it makes it so much easier and chemo is very hard on the veins.

Ann

[roger]

Thanks Ann for your reply. It was nice to hear that side effects aren't an issue with so many. Watch I'll be the rule breaker! As for veins I lost all mine back in 2000 when I had CHOP chemo of Lymphoma. Got through that in 6 months and so far I remain in remission.

I notice in Mike's escellent report that MDS can actually go into remission. I was under the impression that Vadaza and Decagen only postponed the unset of Leukemia. Please some one set me straight on this.

I was dx 6 months agp with MDS and began Vadaza almost ammediately. All that I was told is that it is the MEAD variety and I had a blast of 10%.

Maybe someone can tell me more than my Onch choses to share with me.

Thanks all.