[JulesH]

Greg,

My arthritis has worsened considerably in the past 3 years.

I live in Florida and when temps are 60 – 90 degrees I feel great with no pain.

When temps are 40-60 degrees I suffer and can hardly walk.

I have to take Allopurinal for gout and Uric acid.

This week temps have been in the 60 – 80 degree
range so I have played golf each of the last four days.

JulesH

[JulesH]

LucyM,

When my HGB would drop below 8.0 I would experience shortness of breath and when I take aspirins my nose would bleed even with a platelet count above 100.

Drs. told me to take Tylenol.

With VIDAZA treatments my HGB stays well above 8.0.

JulesH

[JulesH]

Chris,

I am 68 and almost 3 years ago I had my first diagnosis of CMML.

My WBC was about 20.0, my platelets were about 100 and my HGB was 9.2.

All they did was watch me for the first year and then they started treating me when my WBC climbed to 99.0 and my HGB was below 8.0 and platelets were well below 100.

I was receiving 2 units of blood per week for about 5 months.

They tried several different treatments until VIDAZA was available to me in September 2004.

I thought at one time I had just a few months left.

VIDAZA has stopped my need for tranfusions.(no transfusions in 1 1/2 years).

Currently my WBC hovers around 15.0, platelets 200 and HGB around 10.2.

I now feel confident that I could easily have 10 to 15 more years.

There is a lot of different treatments for this disease and a lot of reasons not to let the disease overwhelm you.

The median life expectancy for my disease (CMML) was 2 years when I was first diagnosed.

Keep your spirits up there are a lot of worse diseases that you could have.

Sincerely,

JulesH

[JulesH]

I am in the Tampa Bay area of Florida.

My HGB goes down to about 8.0 10 days after my
VIDAZA during each 8 week cycle but it then goes up to 9.5 or 10.0 before next cycle begins.

I have found that if I have minor surgery, such as a skin cancer removed, my HGB dips. Dr. says trauma will do that.

I also have given up all alchohol products as my Dr. says alchohol inhibits the bone marrow functions.

I have about 6 very good weeks out of each 8 and the other 2 are bearable.

[JulesH]

Sorry, the 2nd sentence should read

I have the increased white cell production,……

JulesH

[JulesH]

Margaret,

I am a 68 year old male on VIDAZA since 9/04 (every 4 weeks). I have had several bouts with kidney stones. In August 2004, a staff infection did severe damage to my heart. Doctors did not hesitate putting me on VIDAZA. In July 2005, I had open heart surgery to receive an artificial aortic valve.

Doctors said they were able to do this because of the success of my VIDAZA treatments. I am still on VIDAZA every 8 weeks, but I have no symptoms of the CMML which had me receiving weekly blood transfusions before the VIDAZA.

I played 18 holes of golf this morning and also last Saturday. I have a tee time for Thursday morning at 7:00 AM.

Before the heart surgery I could not walk more than 30 feet.

[JulesH]

HI

I had a BMB on Oct. 19,2005. A copy of the results were given to me on 11/9/2005, however the date on the copy of the report that I received was Oct. 27, 2005. That tells me that it took 8 days for the total analysis.

BMB was done at Moffitt Cancer Center in Tampa.

[JulesH]

I asked my oncologist about drinking and he said that the function of bone marrow is to create blood cells and alchohol inhibits the function of bone marrow.

He also said that drinking in moderation should not be a problem.

[JulesH]

My brother-in-law lives about a block from the Gulf in Ft Myers in a resident owned mobile home park. They suffered no damage but they are without power.

[JulesH]

Warren

As far as I’m concerned, Moffitt is the best. If there are any new treatments available, they are aware of them. I felt I had about 2 to 4 months left to live about 18 months ago and today I just came in off the golf course after 18 holes of golf. I am planning things 2 and 3 years down the line with no doubt that I will still be around.

I am on supportive treatments of VIDAZA with very few side affects.

JulesH

[JulesH]

We had wind gusts up to 75 MPH on Monday morning but no damage and no loss of power and very little rain.

This from Tampa Bay area.

[JulesH]

We live just south of clearwater about a 1/4 mile form the Gulf of Mexico. Last year we lost electricity in 2 of the storms(total of about 5 days).

It was hot and humid then and I was at my sickest point with this CMML(with antibiotic IVs twice daily for infections), just before I started VIDAZA. I am thankful I don’t feel that way today as we are right on the edge of the path of Wilma.

It is supposed to quickly pass through (3 to 4 hours overnight Sunday night). We are 18 feet above sea level so we don’t worry too much about water.

Good luck to all of you south of us.

[JulesH]

Sandy L

I’ve seen Saba about 4 times, but Dr. List recomended that I be put on VIDAZA and the doctors I see now work in his office.

[JulesH]

Sandy L & Terri,

Thanks for the response. I don’t know a Dr. Anasetti. At Moffitt I have seen 4 or more doctors over the last 2 years.

I am currently on a 6 week cycle with VIDAZA.
During a cycle my HGB will hit a low about 10.2, platelets a low of 120 and my WBC ranges from 6 to 14. 18 months ago my platelets were in the 20 to 50 range, I could not maintain an HGB level
above 7 without tranfusions every week and my WBC was hovering around 100.

Now it’s only VIDAZA and no transfusions for 10 mos.

[JulesH]

Jerry

I get nosebleeds about 7-10 days after my VIDAZA treatments. I also got nose bleeds my last trip to Vegas and that was due to dry air. None of the nose bleeds have been serious.

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