Forum Replies Created
-
AuthorPosts
-
I just wanted to say that you and your family are in my prayers. God Bless You.
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.
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
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 BlessHeather
12/11/07 update
Daddy got back home and went to see doctor. Was told starting chemo again and when he went to start, nurse advised they were changing to Dacogen from Vidaza. Also, doing 5 straight once a day doses instead of the recommended 8hr/3day. Does anyone have experience with this? Thought as per Vidaza website, we were showing partial if not complete response as numbers held for 4 weeks. Confused. As Always.
Any help appreciated.Bob
If you read vidaza.com, it states that a partial response is improvement to at or “close” to normal holding for 4 weeks is a partial response. I would ask your doctor about this as Vidaza states to continue with treatment as long as there is an improvement. My Father has an appt Tues and will discuss this same thing with doctor as we held for 4 weeks then decreased 6 weeks until he had to have transfusion. Will let you know what he suggests.Just wanted to update you. Local Fl. doctor has now said we must have oncologist in N.C. also so that he can put order in for transfusion. SO, he is having a transfusion on Wednesday (hopefully) if new doctor prescribes.
Thank you all for your input on Daddy. It is so appreciated. I have been reading boards since March but did not sign up until recently.
I pray for each and every one of you – including the care givers as they too have a very rough fight.God Bless you all
Heather
Well, Dad just had his bloodwork done this morning and the counts are as follows WBC 8.8, RBC 2.67 HGB 8.0 HCT 25.4 Platelets 145. At official diagnosis of MDS the counts were WBC 4.0 RBC 2.60 HGB 8.2 HCT 24.8 Platelets 288
Just seems like doctor should be doing something other than “waiting for symptoms”.
Mom and Dad are at their other home right now and do not have a doctors visit schedulled until Dec 11.
Any Ideas?
Thanks for all your advice. I agree that a second opinion is needed BUT he is happy and comfortable with this doctor. Also, he says the pain from the 14 shots (2 a day) of Vidaza a month is very bad. He questions whether it is worth it as the chemo makes him feel pretty bad for a while after. WBC and platelets fall from chemo each month but never had to delay treatment while taking due to a low ANC.
Were your dads taking Vidaza 7 straight days or skipping the weekends? I did not feel as if the weekends needed to be skipped but that is how they do it here.
Thanks again for your help
-
AuthorPosts
