Starting Dacogen

[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.

Originally Posted by 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

[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]

Originally Posted by 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

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/N...ine+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.