Looking for Info on Decitabine Treatment

[DonnaS]

I am so glad to find a place to ask questions.
My dad, 77, was diag with MDS about 3 years ago, he has high WBC, low RBC and platlets are low? He was doing well on Hydrox/Urea for the 3 years with arenesp shots too.
He started trasfusions this spring and has had about 10 to date. He is getting them every other week now and is getting weaker. Doctor is recommending Decitabine (4-5 days infusion) then 3 weeks off. He is not sure, he tried interferon about 5-6 months ago and it was not good. He stopped after first round. His WBC is off charts 160. Dr says it can go into 3,000. This is a rare form of MDS Dr. says (trisomy 13) at first he call it mpd and says it has properties of both.
Anyone with info? Please respond. I want to encourage him to try this, but I don’t if it will make him sick!
Thanks for any info…

[sdrake]

Donna,

Have they ever mentioned your dad having CMML? That is what my dad has, and the symptoms you describe sound very similar to his.

Dad was on Vidaza for quite some time with good results. It stopped working, and now he is trying Revlimid. It seems to be working somewhat. We just had an appointment yesterday with another oncologist who seems to think Dad should continue with it. They have mentioned Decitabine as another alternative. There are many on this forum who have had good repsonses to it. How does your dad feel?

I am not much help to you with your question. Hang in there. There is a great deal of experience and wisdom on this forum.

Take care,
Shari

[DonnaS]

Shari,
The doctor did not say CMML, he never really gave it a name for his disorder, kind of a cross between MPD and MDS, he has had itching for 3 plus years, stopped bathing years ago, because it caused hive response. Just wipes down. He still smells good, amazingly.
He has lost about 20-25 pounds in past 6 months, 6’2″ now about 185lbs. He doesn’t move around much because he gets dizzy. Slowly going for the past couple months. Mom thinks he is losing it alittle mentally. Dr. says it could be because the white is so high (160). He thinks this decitabine might knock it down. He has not treated anyone similar to my dad before.

Thanks for your support. I guess I will cross my fingers and hope next week is bearable and he gets some help.

[JaneP]

Donna,

What hospital? You may want a 2nd opinion. I know it is very difficult when they get to this age but I would try to find someone that may have more knowledge of his condition.

I wish I knew more, but again someone on this forum may offer more helpful information.

I pray for you and your family to find the strength to get through this, and encourage your Dad that sometimes it does take feeling bad but only for a short time to feel better.

Jane P

[DonnaS]

JaneP,
My Dad lives in Eugene, OR and is at a cancer clinic there. I did have him come to OHSU up here in Portland, OR for a consult. This doctor Hemoltologist(Deloughery) also said very rare, he had only treated a few in past years. He was nice but didn’t have too much optimism (he said 3-5 years about 3 years ago). He reccommended the interferon, but it wasn’t good for my dad. He has some prostate issues that flaired up with that trial. No more, says my dad of that anyway.
So hopefully he will get better response to the decitibane.
Thanks for your prayers and support.
Donna

[Russ P.]

Donna, I’m on decitibine (dacogen) and it will lower the WBC and platlets as well. It is difficult to predict how your dad will do but I found the decitibine easy to take by IV. The pre-meds of anti nausea and the steroid drugs seem to keep the side effects minimal. Constipation was a problem so he may need a stool softener and should keep his fiber and water intake at a good level. The low point of CBC results comes 2 weeks after the start of treatment and some patients need a little longer then 3 weeks to build them up. Perhaps you can learn how someone else with trisomy 13 has done.
Best wishes annd prayers,
Russ

[maueenh]

Donna,

My father did very well with Vidaza. After it stopped working they started him on decitabine. My father had very low wbc to begin with and the decitabine knocked it down further and he developed pneumonia. With your father’s high wbc I would imagine that is not a risk. It usually takes 3-4 cycles for decitabine to “kick in” but many on this forum have had success.

best wishes
Maureen

[DonnaS]

Thank you for your responses,
It seems leaving decisions of this magnitude to the doctor is very difficult, but it is all I have. Good luck to you in your treatments and keep up your good spirit!Donna

[Lacey]

My mom is on the Dacogen also. 1 week on 3 weeks off and she has had very few side effects. It’s hard to tell how much it has helped or not as she was doing terribly until they discovered she also had hyperthyroid as well as MDS. Since they killed off her thyroid with iodine she is doing much better. Still on the Dacogen regime, probably her 6 time or so this month. Back out working in the yard after being practically housebound for a year. Could be the thyroid or Dacogen or combination of both.

[cherylm]

My dad failed a clinical trial with Vidaza and MS 375. We’re kind of stuck as to what to do next. We are thinking about dacogen. I’ve been on the NCI website looking at other clinicals. Anderson CC in Texas has a clorfarabine trial that sounds very interesting. I’ve consulted the doctors managing the trial and they said they’ve been very successful – 50% response rate. Thing is it’s in Texas and we’re in PA. I understand Cornell NYC is in line to offer a similar trial with clorfarabine but they don’t have a date yet. In the meantime, we’re considering trying dacogen. It’s all so confusing. Having no response and actual mds progression with Vidaza, odds are against the dacogen working. Frustrating! Glad it seems to be working for your mom.

[Author]

Posts