Vidaza Treatment Questions

[daughter searching for answers]

Thanks Greg and Russ
It is nice to have people to share this disease’s questions with. Dads WBC was at 12.8 at the start of Dacogen. Nurses have warned us to be VERY careful as the number will drop drastically. Actually told him on 2nd day if he had any Christmas shopping to do, they advised do it that day.Has this been the case with you two? They have actually scared us as Daddy feels so good. He says that this med (he has taken 4 days so far) has not had the side effects that Vidaza did on him. So far, of course. Any tips are greatly appreciated. We are slightly worried knowing that Christmas is coming and we are also all booked on a cruise Jan 12. Doctor did not seem to be pessimistic about Dad going but nurses certainly were. I will keep you both in my prayers.
God Bless

Heather

[jaxem]

heather
how old is your dad? my wife usually hits her low point in counts about 2 weeks after start. he’ll need 6 rounds for dacogen to work. my wife did the rounds at home (after 1st round in hospital) at 3 hours/day for 5 days (per MDAnderson trial). worked out great. although it held down blast increases, it didn’t bring her into remission (less than 5%) so she’s doing 3 additional rounds with valproic acid (depakote) added (pill). good luck to your dad!

[daughter searching for answers]

He is 75 years old. He still has no side effects although his nadir will probably be Christmas Day. He actually says that Dacogen is 100% easier on him than Vidaza. He goes Friday for a CBC to check the numbers. More for our sake than the doctors. He had CBC Monday and WBC had fallen to 7 RBC 3.1 and hct held.

May you and your wife have a very Merry Christmas.

Heather

[Russ P.]

Heather,
Glad your Dad is feeling well on Dacogen. I also felt that it was easier than Vidaza. Regarding the 5 day regimin, I e-mailed Dr. Issa at MD Anderson and he said they felt that protocol was better than the 8day/3hour method approved by the FDA and shown on Dacogen’s web page. If your Dad nadirs hard and has very low WBC, I would not recommend Neulasta or Neupogen. This is just my own non-medical opinion – I felt it was very stressful on my bone marrow and may have hastened my transformation to leukemia. In lieu of those drugs consider extra care about exposure and/or prophylactic antibiotic and antiviral medicines. Best wishes,
Russ

[jaxem]

heather
thanks & a great holiday to you and your family too. don’t be too shocked at the hit his counts take, especially platelets. adding the depakote REALLY seems to be crushing platelets on my wife. Hope the blast cells are getting crunched too. we’ll see tomorrow @ Clinic.

[gj]

Heather

Glad your dad is doing well and is handling the Dacogen as things go along. It’s hard to predict how his reaction will be. Since I’ve been treated with Dacogen, each time between treatments has been different. My counts always are drifting on the low side but things have progressed. As long as the doc says it’s OK for your dad to travel, let him enjoy his life.
I’ve had to travel several times recently and as long as I wore as mask on the plane the doc was OK with it. He gave me back up scrips for antibiotics in case I spiked a fever and let me go. Just avoid crowds and kids. So warn your dad about “mosh pits” but enjoy his life.
Hope you all enjoy the cruise and have a good new year!!
greg

[Mary4Mike]

Heather,

I have been reading your posts and wondered if your dad hit his nadir yet from the Dacogen. Did he have any side effects at all? My husband is going to start his second round of Dacogen on Jan 7. He hit his low point a few days before Christmas and had to be hospitalized with a fever. His counts REALLY dropped, but they are rallying now with the help of a couple TX’s and a platelet TX. He says he is ready for his second round. He never had any side effect from Vidaza except extreme soreness at the injection sites. Will your dad do his second round after you return from your cruise? I hope you have a wonderful time, stay away from “coughers”, but try not to dwell on this horrid disease.

Bon Voyage!

Mary

[daughter searching for answers]

Well, only the one round of Dacogen. It hit numbers hard but rebounded fairly decent. Just thankful he did as well as he has. 2 weeks ago, he got a rash on his chest. He had gotten a little previously on Vidaza. We were on vacation Jan 21 and welts started on his chest with a few in hair and on neck . Doctor gave him a 6 day regimen of Prednisone (today is the last day). The welts seem to have gotten worse and have moved up his neck and on his face since taking the prednisone. No infection seen but itch really really bad. Have any of you ever gotten this and if so, what eased the itching while waiting for them to go away? Doctor casually said “yep, looks like a reaction to the Dacogen”. I have read the boards and can not find that much on this type reaction. Any help is appreciated.

[poppyshope]

Is it Chicken pox I remember someone in sloan having the same thing and they thought it was a reaction and it ended up being chicken pox- seems many MDS patients are or have come down with chicken pox or shinglew is here a link? I wonder?

[poppyshope]

I meand shingles the baby hit the w-sorry

[poppyshope]

and the d i will post when he naps only- sorry for confusion…

[g-masews]

my husband recently saw a new doctor who recommended his getting the shingles vaccine, also the pnumonia vaccine. Older people are far more susceptible to shingles because of the decline in their immune system. An MDS patient is of even greater susceptibility and even a small outbreak would run amok in their system. Once shingles break out, Acyclovir needs to be administered within 72 hours to be effective. You can only get shingles if you have already had chicken pox.

[Author]

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