Anyone having had Dacogen…….

[Mary4Mike]

I am wondering how long it took to administer your Dacogen treatment. Mike received 7 cycles at one infusion site and it took approximately 20 to 30 minutes. Today he received it at another center and they told him the instructions say to administer over 3 hours. This was a surprise to us.

I would appreciate any feedback on this.

Thanks,
Mary

[jaxem]

mary
from the manufacurer
Dosage and Administration

It is recommended that patients receive DACOGEN® (decitabine) for Injection for a minimum of 4 cycles. A complete or partial response may take longer than 4 cycles, so treatment should continue as long as the patient continues to benefit from DACOGEN.1
Recommended Dosage and Administration

* The recommended DACOGEN dose is 15 mg/m2, administered by continuous intravenous infusion over 3 hours, every 8 hours for 3 days. This cycle should be repeated every 6 weeks.
* The DACOGEN dose may need to be delayed or reduced based on hematologic laboratory values.

In the hospital setting, it is normal to give it over 3 hours at 15 mg/m2. However at other admins, it may given quicker at increased dosing per trials at MD Anderson. 20-30 minutes seems a bit fast to me.

[Marcla]

Hi Mary.. Hope this helps in your quest for info on Dacogen infusions. My friend Ralph has finished a series of 8 treatments and after a BMB that showed better counts in most areas, his doctor decided for him to continue on with a 2nd series. This week he is doing his 2nd cycle consisting of 5 days of Dacogen 40. The infusion time is 1hr. 20min. He handles the treatments well but does get more fatigued as the week goes on and this lethargy continues through the weekend.
We are so thankful that Dacogen has worked for him and pray for continued good results. I am also glad I came across this forum which has helped me understand MDS through the input of the many members.
Wishing you and Mike the best…. Marla

[Marcla]

Hi.. Thought Ralph’s profile might give you an inkling of what he’s dealing with… I’m fairly new at this.. Marla

[billboy]

Hi Mary,

Each of my Dacogen cycles consisted of five consecutive days of infusion, with each event taking about two hours, although some of that time was spent just waiting for the nurse.

Bill F

[Marcla]

Mary.. I only gave the actual infusion time. Bill is right in that it takes about 2 hours by the time everything is set up… Marla

[Jack_dup1]

I’m on my 5th cycle this week, it has alway been an actual infusion time of one hour for five days.
Jack

[Jo L.]

Mary –
John has completed 11 rounds of Dacogen 46 mg, he will start #12 on Monday. The actual infusion of the Dacogen takes a little over one hour, but the whole procedure, with the pre-meds and everything takes about two hours. The first day, Monday, there are additional pre-meds that add about 1/2 hour. John’s numbers had been consistently holding in the 11’s & even 12’s for HGB for awhile, but the last couple of CBC’s we’ve noticed a drop to low 10’s. We’re hoping it is not an indication that the Dacogen is losing it’s effectiveness.

Jo

[Mary4Mike]

Thank you to everyone that responded. Mike is receiving Dacogen as I write this and it has been the same all week – 3 hours from putting the needle in until they remove it. The flush time, etc, is after the 3 hours. I am happy to read that you have had good responses with Dacogen. We are praying that perhaps by getting the drug slower, Mike will get a better response.(you never know ) It is also interesting to read how all of you were able to tolerate the higher dose of 40 to 46. Mike is taking 25 now because the higher dose usually landed him in the hospital.

Another example of how we are all different. Thanks again for your inputs.

[jaxem]

mary
don’t forget that the dosage is calculated based upon body AREA. as an example, my wife’s area was about 1.5 m2. she was about 5″1″, 100 lbs. her dosage came out to be 15 ml/m2 or 22 ml total. again, this was the 3 hour infusion given every 8 hours over 3 days. if you get the 1 hour infusion given over 5 days, they usually step up the dosage to compensate. did it land him in the hospital because of side effects (GI track, etc) or due to the drop in blood counts?

[Mary4Mike]

Jack,
He ended up in the hospital because of fever, chills, diarrhea, weakness and extremely low counts. The third time he also had pneumonia.

When he went in Friday for day 5 of Dacogen, the nurse said they called the drug rep for Dacogen. He said it is one hour infusion time for the five day cycle. (just like you said)

The first 3 cycles were based on his body area and he was given 45ml. After 3 times in the hospital and such delays in staying on cycle time because of blood count recovery, the doctor started cutting the dosage. The doc was also nervous about his severe nadirs. At one point he said, ” you could die! ” when we were insisting on starting another cycle. So far the reduced dose has kept him out of the hospital.

He feels pretty good, is still working, and we are leaving for a month in Florida. We have a hemo down there and we feel we need to keep doing things while we still can.

As always, thanks for the info.

[shellbivens]

Mary and all who read this,

My daddy started participating in a study at MD Anderson in Houston back in Nov. He gets 2 injections per day for 3 days in a row. I believe it is 60 (don’t know if it’s mil, micro or what), just know that at first he was nauseous for about 14 days. His platelets were pretty high until the second round. He seemed to tolerate it better in Dec. Our (his) 3rd round was last week and his blood was a bit low (for him, anything under 10.5 he has to get blood–cardio issues). He got 3 units of blood yesterday and will get labs done from local oncologist to send to MD Anderson. I am eager to see what his blood level is at after 3 units. We go back the beginning of Feb. and he will have another bone marrow biopsy done….he had one at the beginning of the study and had one last week after the 3rd round. At least we will have something to compare. Hopefully all will go well. We were told that someone in the study went into remission after the first round of treatment. Some aren’t responding, but the doctor is encouraged that my daddy’s numbers are “jumping” around. Said that something is working. It gives us hope. Good luck to all and I hope this info helps someone.

[Mary4Mike]

Shellbivens,

Do you know what the name of the drug they are giving your dad is? Try to find out so we can do some checking into it.

Thanks for sharing and please keep us up to date.

Everyone on the forum is in our prayers.

[Mary4Mike]

Shellbivens,

I just googled clinical studies at MD Anderson and one popped out:

Phase II Romiplastim

Is this the one? From what I could read quickly, it looks like this deals with platelet issues.

Let us know

[shellbivens]

Mary, sorry I’ve been away from the board for a little while. The drug daddy is receiving is Dacogen (decitabine). He has only had issues with red blood cells. I don’t know the name of the study. We go to MD Anderson every 28 days. They did a BMB in Oct. prior to the treatments. He began in Nov. where he went in three consecutive days to get 2 injections. They started in the stomach, next day one arm and then the other. He was nauseous for about 14 days and his platelets increased dramatically, but then was okay and his numbers seem to be alright. He said the shots sting (like a bee) for a while and he gets very fatigued. Went in Dec. just received shots. Jan. had to have BMB again and then shots. We go back in Feb. for another BMB and shots. Just got the results from Jan BMB. Blasts are up. In April they were 3%, Oct. 1% and Jan. 4%. Not sure what all this means. Sorry I rambled so long. Hope this gives you some insight as to what we are doing. Oh, daddy’s doctor is Dr. Garcia-Manero at MD Anderson. It was odd that we got him, as we were told that he hasn’t taken on any new patients in years.

I’ve been searching and finally found the study that daddy is in. I hope you are able to use this link http://www.cancer.gov/search/ViewClinica…earchid=5709024 If not, just go to cancer.gov find the clinical trials and I believe you can search by Protocol ID which is DACO-026NCT00619099. I just happened upon it through a link from another site. Let me know if this doesn’t work and I will try to provide more information.

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