Starting on Dacogen

[Norma Bretz]

Hello, my name is Norma Bretz, I am 75 years old and live at Lake of the Ozarks in Missouri. I have had MDS for 2 years. I have been doing pretty well on Neupogen & Aranesp. My numbers (except for platelets) stay consistent. My Platelets are all over the place....20 to 50 usually. I have never had any transfusions to date. I get both shots on Tuesday and Neupogen shot on Friday. Sometimes my Hgb is over 12 so they cannot give me the Aranesp. I have went as long as two weeks without the Aranesp.

My doctor wants me to try Dacogen (4 months on & 4 months off for 4 cycles) I am a little concerned and afraid of all the side effects I have heard about. I'm undecided as to try the Dacogen or keep on doing what I am doing until it doesn't work anymore. According to my doctor the Dacogen is the only thing that works on "platelets". I would appreciate any thoughts on this decision....do I do it now or wait????

[Ger]

Welcome Norma,
My husbands experience on Dacogen was not a positive one. He was dx in June this year with high-grade MDS. He had his first week of Dacogen therapy the last week of June and everything seemed to be fine, but by the middle of July he was put in the hospital with nutrapenia and then they found he had pneumonia. He was treated with antibiotics for a week and had platelets twice during his week long stay in the hosp. His Dr said he was in a very serious condition. The Dr has decided that it is not worth the risk to do any more Dacogen only as a last resort. He is now being treated with Neupogen and his wbc is slowly improving. His platelets are really low at 30. He is now getting neupogen once a week and will have the next BT on the 18th.
Sorry I couldn't be more encouraging but this was Don's experience.
Geri
Wife and caregiver of Don

[Norma Bretz]

Thank you for the information. Doesn't sound too good. I am supposed to talk with my doctor again tomorrow. I may change my mind and just keep up with the Neupogen & Aranesp. Don't know how much longer that will work.

Sincerely,
Norma

[Norma Bretz]

Hi Geri

I was wondering why your doctor is only giving Don 1 shot a week???? When I was first dx with MDS they gave me a shot of neupogen everyday and then about a year later we went to 3 times a week and now I am getting 2 shot of neupogen a week. When we travel my doctor gives me NULASTA and wow... that really works for me, shot my white count up to 12 and it lasts for 2 or 3 weeks. All 3 of my counts (WBC,RBC HGB & Platelets) my doctor called my type Trilineage. Medicare will not pay for Nulasta...they say it has not been approved for MDS but it sure works for me! Fighting insurance people for what we need just upsets me.

Regards,
Norma

If I can answer any other questions about Neupogen you can call me at: (573)348-1481 or e-mail bretzbrn@ao.com

[Ger]

Good Morning,
Don was on Neupogen twice a week for four weeks and the WBC was improved enough that the Dr then chose to do one a week for four weeks and see how that does for him.
I went to our Primary Dr this week and he suggested that the Hematologist might choose to try another round of Dacogen coupled with Neupogen.

Pretty much right now I am concerned with the low platelet count as he also takes Coumedin (blood thinner) because of his mechanical heart valve. I really don't understand the connection between the two.

I have read a lot of positive info, from others on this forum, who are on Dacogen and it is working really well.

I wish you well however you decide.

Yes I may call you when I have a minute.
Geri

[Norma Bretz]

Hi Geri,

Well, I have changed my mind again! I am going to try the Dacogen but I have decided to wait until after the holidays. I don't want to ruin everyone's Thanksgiving & Christmas. I went today for an Education Session on the Dacogen. I was there for over an hour and was given good information. I know the Aranesp & Neupogen is not going to work forever but right now, I feel pretty good most of the time so I decided not to "rock the boat" and wait until after the first of the year.

Sorry to hear your husband has heart problems also. After I was dx they told me to get off the one aspirin (baby aspirin) a day because it would thin my blood. I am interested in all the talk about Shark Liver Oil and how it helps the Platelets. I may give that a try while I am waiting to do the Dacogen.

I wish you both well, it is so hard being a caregiver. My husband & children worries so much and I am sorry about that.

Regards,
Norma