[Jim]

I have all three-Tinnitus, iron overload and AML. My Tinnitus was first on the scene about 12 years ago. Some days it’s louder than others but I don’t think it’s associated with low HGB. I will try and pay attention to that. About the only thing I’m sure of, is that it’s affected by Aspartame and cafine.

JW

[Jim]

Quote:

Originally posted by krishananth:
Jim

Please could you let me know whether you took Danazol with some other medicine. Regards
Sandhya

I also got Aranesp as needed and 5mg of Prednisone daily.

JW

[Jim]

I was on Danazol for about six months. It raised my Platelet count from 25,000 to the 130,000 range during the six months I was on it. RBC and WBC improved somewhat too. It quit working and my Platelets went back to the 20,000 range.

JW

[Jim]

Folks on the list have mentioned having “leukemic events” when MDS goes to AML. What is a Leukemic event?

JW

[Jim]

Michael,
I’d like to hear more about your uncle’s experience. I am into round 2 of Dacogen treatment and hope I have success to report after the next round. My doc thinks it’s my best chance.
JW

[Jim]

My experience has been very similar to Carl’s. I just finshed round two a week ago today and am going into my “low” weekend. I had a bag of Platelets and two RBC bags today (Thursday).

JW

[Jim]

My celularity is similar to Jack’s. I’d like to know what it means in us older folks.

JW

[Jim]

I am very sorry for your loss. Your Mom is in a better place.

Regards,
JW

[Jim]

I’m sorry to tell you all but the Danazol stopped it’s benefits sometime around the end of August or early September. The beginning of August my platelets peaked around 130. The doc and I thought we found the magic pill to the problem. By the next blood test on 9/15/2006, My platelet count was back down to 21 . A BMB showed the MDS was getting worse. As of now, I have finished round 1 of Dacogen, supossed to start round 2 next Monday. I’ve received several platelet transfusions and am struggling to hold at 10. The count has been as low as 3.

I also have been fighting outbreaks of Hives since August. Doc says take Benedryl and doesn’t seem concerned but I’m going to start “pushing” for better answers.

There are others on the board that know the Pineapple-sesame seed diet better than I do, Aelksandra. I tried it last year but didn’t see any improvements.

Jerry, my liver was checked over the treatment period. Had no problem. What side effect did you have that was “pleasant”??

JW

[Jim]

Daughter,
Before every Vidaza injection, I was given Kytril to control Nausea but never had a problem with it. I did have a problem with constipation during the first week of injections that I learned to control. Only other problem was soreness around the injection sites but that was minor. Hope this helps.

JW

[Jim]

Quote:

Originally posted by Neil:
Are there any symptoms of low plts? If not at what point does one get a TX?

In my case I went in for a CBC 6 days after my last Dacogen IV thinking I needed PRBCs. Results came back with HGB=7.2 and PLT=3. They put me in the hospital right away to get Platelets and PRBCs. When I was undressing at the hospital, I noticed red spots popping out on my feet and ankles. Something I hadn’t noticed several hours earlier when I got up in the morning.
Obviously I was at my low point. My docs policy is to transfuse platelets when counts are under 10.

JW

[Jim]

I’ve had three, all with the local, Ativan and morphine. The second was the only one to give me trouble. The nurse had a problem getting the IV in and I had a major anxiety attack.

JW

[Jim]

Carl,
If you don’t mind, what are the before and after Platelet counts with the Dacogen?

JW

[Jim]

Certainly a positive sounding article. Maybe too much so??????

JW

[Jim]

My Doc is having a Porta-Cath installed Friday and I start Dacogen Monday as an out patient for the five day cycles. Doc chose the port because he feels he will have to use it for other items as the treatment progresses. I understand where he is coming from and that bothers me. I’m going in with an HGB of 9, WBC of 1.5 and Platelets of 15. Not the best of conditions.

JW

[Author]

Posts