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]

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]

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.

:confused: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/2009/06/03/studies-show-improvement-with-increased-dacogen-treatment-cycles-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.

[Al's Wife]

Roger,

My limited understanding (we're new to this - my husband was diagnosed with MDS on 5/26/10) of MDS is that approximately 10% of MDS patients progress to AML, but I have seen some studies that put the number a little higher.
My husband is fixing to start his second week on Vidaza (he gets it 5 days once every 28 days) in an IV in his arm - not a shot. So far, he's done well.
It seems that every single case is different and what works for one might not work for another. Let's hope they find a cure for all kinds.
God bless,

Linda

[ann]

Good luck Al's wife. My husband is starting his 12th or 13th treatment of Vidaza and the oncologist told him his MDS was holding and not yet in remission but close. We are so thankful. Last year at this time we had almost given up but thank God we are doing good. My husband has congestive heart failure and that is what he thinks will take him before the MDS does. We take one day at a time. God bless you and take care of yurself, its a long row to hoe.
ann

[roger]

Well I had my first session of Decagen. It went well I thought. Now with a picc line startup is a peice of cake. I was delighted to see there were no premeds offered just some compose in case I feel nausia. Its now a few hours later and I've had diner and so far no nausia.

They said it would take 2 hrs and it was almost exactly that. but I've got to tell you it was the longest 2 hrs I've spent in a long time.

Four more days then the next cycle in 28 days.

I hope all others who are on this "stuff" do well and is administered with no side effects.

[Debbie W]

My husband just finished his second cycle of decitabine and the only side effect he had was constipation. On another thread someone mentioned Senna and a stool softener which he used, and needed, both weeks.

Good luck!

[roger]

FOLLOW UP: I just received an email from the doc. The result of the bone marrow biopsy shows a change of 10% June 09 to this last test which shows now less than 5%.

I assume the percentage is referring to the blasts. If so I should be one happy camper. My question now is this improvement was the result of the Vadaza which I no longer take.

I'm wondering if the Deagen will do as well. I guess we will all know upon my next BMB. Ouch

[Susan L]

Hi - I have started Dacogen last month and finished my second round on Friday. I have it IV x 5 days and 21 days off. I have been extremly tired around the 10th day and I believe that is when my counts drop the lowest. Does anyone else have these real extreme tiredness from treatments? I am new to the site and do enjoy reading everyone's comments. It does help to know others are out there. Thank you

[Susan L]

Roger - I started Dacogen May 25th. I have finished two cycles next one on July 19th. My only problem is that I am exhausted all the time. I have antinausea meds before treatments and that helps. Hope you do good - please let me know what side effects you have. Like I said, the tiredness is my only real problem as I am trying to work also. I have MDS raeb w/blasts, abnormal chromosome abnormalities. Previously had treatment at the NIH w/ATG - remission for 7 yrs then counts bottomed.


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

[Susan L]

Roger - Interested in knowing how you are doing on your treatment of Dacogen. How is your fatigue doing? I start my third round (5days on 21d off) next week. My only problem is being soooooo tired. Thank you in advance.

[Mike Conlon]

Hi Susan:
I finished my 23rd five day cycle which began my fourth year on dacogen. Currently every nine weeks @ 40mg. By the end of the week I am greatly fatigued, and this using runs till the following Friday when I begin to feel better and usually Saturday I'm fairly good. I'm tired all the time, but the first week after treatment is the worst. I'm usually good for a book a day at that time. Good luck, if there are any other questions I'll give them a try.

[Susan L]

Thank you for your response to the tiredness. I am figuring it out that it is the week after that I am totally exhausted. I start my next treatment on the 19th. I get 40mg x 5 days, and antinausea meds prior to it. (Aloxi) Boy 4 yrs is along time - that makes me feel better that you can be on it that long. Thank you and Best of luck to you also.

[Susan L]

I am starting Vidaza after being on Dacogen for only 3 months. The Dacogen for some reason was not working, according the BMB. I am just alittle worse and now I am starting Vidaza. The side effects for the Dacogen also were really bad and I am wondering what experiences people have had with Vidaza. Hopefully it'll do better.

[Chirley]

Hi Susan L,

I was on Vidaza for 3 cycles and my MDS progressed from RCMD to RAEB in that time.

I also developed an ataxia with sensory loss in both legs to the mid thigh. This is not a known side effect of Vidaza but it seems to be slowly improving with the postponement of this last cycle of Vidaza. Coincidence??

Other than that I had extreme fatigue and increased blood transfusion requirements. My platelets which had always been normal also dropped but not to anything too dramatic.

I developed fever in the low 38s a few days into every cycle. This required IV antibiotics for 5 days each cycle just to be sure I hadn't developed an infection.

I had no nausea/constipation/diarrhoea etc., but then I was always given IV tropisatron (sp) prior to the Vidaza. I was on IV Vidaza 7days in 28.

We all seem to react differently to drugs and I wish you luck with Vidaza. It's been shown to be very effective for a lot of people on this forum and I had high hopes for it as well.

Keep well.

Chirley

[Susan L]

Thank you for your quick response. I am keeping my fingers crossed this will work. What are you on now? I hope things are going better for you. I will let you know how it goes.

[Birgitta-A]

Hi Chirley,
Good that the ataxia and sensory loss in both legs are improving slowly when Vidaza is postponed! Hope the infiltration that they found at MRI will disappear too and that you will be able to have a SCT!
Kind regards
Birgitta-A

[ann]

My husband has been taking Vidaza for 14 cycles. He has had no side effects and has been doing well. Then, last week he needed a transfusion and again this week needed another. He is having a bone marrow biopsy tomorrow and we pray that the results are good.
Keep your spirits up. Will pray that the Vidaza works for you.
ann

[Susan L]

Ann -
Thank you for your reponse also.. So far so good. I will let you all know how things are going when I finish my cycle and get into the low end of the counts. I hope your husband gets better quick. What type of treatment is he doing, or is that being waited upon till the bone marrow bx results come back?

Chirley - I hope everything gets together for your SCT.

Best wishes to all.

[ann]

My husband has been on a 28 day cycle of Vidaza and has done so good.
He has other health problems to contend with and they seem to be a major factor in his MDS. He has been on Vidaza since 9/09 and had few and far between transfusions. Last week he had to have 2 units of blood and then when he went in Monday for his Vidaza his blood counts were down as low as last week so he had a transfusion Tuesday (2 units). The oncologist decided he needed to have a BMB tomorrow. We are praying that his blasts have not changed and his MDS has gone into AML, if that is the next stage. Of course, I am scared and trying not to let him know how I feel. No sleep tonight I am afraid.
ann

[Susan L]

I am so sorry your husband is having problems. Do you have family around to help share the worries? I understand your scaredness, I get that way myself wondering the unknown. I have found that there is always someone here to vent to and listen. I will pray for your husband and you.

[ann]

I have family and friends nearby and they are great support. It is when I lie awake in the dark that I worry. I give my worries to the Lord, but seem to take them back. I am not a good Christian it seems. I am a frightened wife.
God bless all of you who give so much to these forums. It is nice to be able to express our fears here among folks who understand.
ann

[Susan L]

I hope everything is going ok for your husband. Let me know what the BMB results are. You are right, everyone here is such a big help in helping to keep things together. I finished my first cycle of Vidaza on Friday. So far so good.

[ann]

We got the results of my husband's BMB and it had only changed from 5 blasts to 6. The oncologist said she was pleased with how he ws doing and didn't want to stop the Vidaza treatments. She said that she is keeping close watch on his progress and we are pleased with the treatments. After
getting his second transplant in as many weeks he is feeling very good. No more tiredness than usual. We are so glad that the BMB wasn't as bad as we were afraid it might be. Just have to keep trudging along as best we can. Praise God.
ann

[Susan L]

We got the results of my husband's BMB and it had only changed from 5 blasts to 6. The oncologist said she was pleased with how he ws doing and didn't want to stop the Vidaza treatments. She said that she is keeping close watch on his progress and we are pleased with the treatments. After
getting his second transplant in as many weeks he is feeling very good. No more tiredness than usual. We are so glad that the BMB wasn't as bad as we were afraid it might be. Just have to keep trudging along as best we can. Praise God.
ann I am happy that the treatments are keeping him steady. That is a good thing. It sounds like you all have a good doctor too and that is really important. I am feeling ok, tired but not exhausted yet. I am keeping my fingers crossed. Have a good weekend with your husband and get some rest yourself. Susan

[CMM NYC]

We started second round of Dacogen Sept. 7 ... no change in counts will platelets getting to single digits and WBC at 1 now. Doctor is recommending 10 day intense Dacogen treatment ... has anyone had any experience with that (or even heard of it?)

[Birgitta-A]

Hi CMM,
Nobody knows the best doses for Dacogen (decitabine) or Vidaza. Since we are different we will have different results even when we get the same dose.

There are many trials with different doses of Dacogen like this one:
http://clinicaltrials.gov/ct2/show/NCT00067808?term=decitabine+mds&rank=6

The study is done at MD Anderson - I think it is the best cancer clinic in the world. As you can see they test 10 mg Dacogen during 10 days and compare that dose to many other doses. One member of this forum got a lower dose of Vidaza in a 10 days cycle and did very well during one year.

Be careful when your WBCs are so low - avoid infections and go to the hospital if you get fever. Avoid everything that can decrease your platelets especially pain drugs.

Hope your counts will increase with Dacogen ;)!
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low WBCs, Thalidomide and Prednosone for bone marrow fibrosis (platelets have increased from 22 to 66)

[CMM NYC]

Thanks for your reply Birgitta-A.

We've been consulting with MD Anderson. They didn't mention a 10 day Dacogen treatment. The NY doctor wants to do a 10 day treament to "knock everytyhing out" and build from scratch. From what we read the 5 day Dacogen treatment is the standard -- so we were curious if anyone else had experience with a 10 day treament.

[lfeinsmith]

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/2009/06/03/studies-show-improvement-with-increased-dacogen-treatment-cycles-asco-2009/