Dacogen First Cycle

[maueenh]

My father is now 3 weeks from when he started Dacogen. His platelets went from 40 to 8 (today)and his wbc are now 1.1 vs 1.3 when he started. His rbc has remained about the same but he has been having weekly transfusions. His wbc was 0.5 last Saturday so I guess there is some improvement.

He has a persistent sore throat, constipation, no appetite and in general does not look good. I don’t remember him feeling this badly when he started Vidaza. Can anyone tell me if they experienced the same things and if and when it improved. I spoke to the doctor yesterday and he said they will continue with the next round next Wednesday even if the counts are low.

Thank you
Maureen

[Carl]

Maureen,

I went through the same side effects but mine only lasted a week to ten days after the Dacogen treatments, then I started feeling better. Just before the time for the next treatment I felt OK.

My platelet, WBC and RBC counts all went a lot lower after the treatments but gradually went up. I also had 2 units of irridiated/PRBC about a week after the treatments.

There is nothing wrong with waiting another week between treatment to help your body recover, so discuss that with yor Doc.

[jaxem]

maureen
side effects of demeth drugs is cytopenia; all levels usually drop until the body recovers which in my wife’s case, is about 5 weeks & even then it’s a slow down & levels continue to drop. transfusions with especially platelets are never ending with rbc’s & neupogen/neulasta for wbc’s following.

carl
any talk about combining a demeth drug with an HDAC additive? a lot of people have stated that straight demeth drug didn’t do anything for them but the additive did the trick to get them into remission or back into mds.

[Carl]

Jack,

No my doc and I are now deciding what to do about my spleen that has gotten to the size it is now causing pain in my abdomen.

[maueenh]

Well dad ended up in the hospital Friday night with a 102 temp. Since Friday night they have given him 3 bags of rbc and 1 platelet. He is still in there and they are giving him IV antibiotics. He still has no appetite which really bothers me but hopefully this will pass.
It sounds like the next round of Dacogen (which was supposed to begin Wednesday) will be delayed.

Maureen

[shirlsgirl]

Sorry to hear about your Dad Maureen. Hope he’s eating and feeling better soon.

[jaxem]

carl
good luck to you & the decision. i’m thinking about you.

maureen
my wife just got out of the hospital for a week after running a 105 fever, developing pneumonia. believe she caught it from being in a house that was closed for 9 months (spores & stuff); probably a fungus infection. we also had to delay her 4th round a week until she gets better.

stay with it! this disease really sucks!

[Russ P.]

Jack, Did you have specific HDAC in mind. I believe they hold promise used with Dacogen or Vidaza.
Russ

[jaxem]

russ
no, not really. i know HDAC additives are hopeful when the demeth drug doesn’t work. i wasn’t aware of any trial completions using dacogen with hdac, only vidaza. good luck to you with your treatment. I hope it drags your blasts way down. any date for a new bmb?

[jas174]

Maureen, Like your Dad, Vidaza stopped working for my husband. Now trans. dependent. Finished the first cycle (4 days) of Dacogen. A 2 cycle trial and if he doesn’t improve by then, perhaps another drug…Dr. talking BMT also. Now he has severe back, leg and head pain. Drs. tested, can’t find cause. Does your Dad have similar pain? Praying your Dad and my husband will have success with the Dacogen. Thanks, Joy ___________________________________ Husband, 61, formerly, energetic, retired military. Treated for Lymphoma 2004, clean for 3 yrs., then diagnosed with MDS 2006. Vidaza 10/06, Dacogen 6/07 Waiting…

[Terri]

Jack, Bob is on Vidaza what is the HDAV that you are mentioning that they did trials for with Vidaza is it approved. Want to ask our dr his thoughts.

The increased dose of vidaza has taken a toll on Bob his counts plummet all but the wbcs which are always his problem without vidaza they skyrocket. Last week close to 40 – we don’t have Vidaza schedule for July since DR wanted to give Bobs body time to heal and he can not get the port.

[maueenh]

Joy,

My father has not experienced any of the pains that you refer to. Why is the doctor only recommending 2 rounds? My father’s doc has told us that dacogen can take 3 or 4 rounds before you see improvements. How are you husband’s counts? My father’s are terrible. Thank you for the thoughts and prayers and I will do the same.

Maureen

Maureen

[jas174]

Maureen, Hope your Dad is doing better. My husbands numbers have not yet come up, (6 weeks from the first Dacogen treatment) so the onocologist won’t give Dacogen, round 2 to him. He is transfusion dependent weekly for RBCs and PLTS. His back and head pain is severe and he is on 24-7 morphine. since no Dr. has found the source of the pain and fevers, his last hope is a consult with an infectious disease specialist. Today his #’s were wbc, 3 red,8 plts 17. Transfusions tomorrow. Husband, 61, formerly energetic, retired military. Treated for Lymphoma 2004, clean for 3 yrs., then diagnosed with MDS 2006. Vidaza 10/06,worked well fro 7 months, then failed. Dacogen 6/07 Waiting…

——————–
Jas174(:-)

[Author]

Posts