Back to the hospital....
 

Well, I have been fighting this fever since Labor Day. Got platelets yesterday and fever was 102.3 last nite, and I took 2Tylenol and decided it is time to go to the hospital to get checked out....again.........I flat out just feel lousy, and there is no quality of life to lying on the couch all day, and going to bed at sweating all night.........
Between the low counts, the fevers, increased need for blood (now weekly!) and the GI issues and now hemorrhoids (to add insult to injury), I figured its time to get all of the above addressed at once. I hate the risk of going in, but at the same time, don't want to be here alone at 3am with a raging fever.

The gator is snapping at my toes once more, and I am determined to let him starve!

Fever
 

Hi Cheri,
Yes, the gator should wait ;)!

Hope they manage to find out why you have fever or can give effective treatment without knowing what they are treating.
Kind regards
Birgitta-A

Good Luck. I hope they can better help you while you are in the hospital. Breath deep and say a little prayer. Lori

I'm with Birgitta - let the gator go hungry! Hope you feel much better soon.

still here..........
 

Well, this has been quite the pesky fever. I have been on IV Cipro, Flagyl for days, gotten 2 units PRBC, officially diagnosed with "colitis" and have numerous other drugs going on. But I made the right choice to be here and have everyone come to me....all of the Drs are on the same page at the same time.

Still not fever free, but declining daily. I has definitely taken me longer to snap back this time, but determined to get better before leaving....today is the first day I felt a little better....

Thinking of starting Danazole when I get out...supposed to help platelets and possibly white counts too. Unexpected hairiness a concern!
More later....cheri

Fever
 

Hi Cheri,
Good that you feel better :)! Hope Cipro and Flagyl will have effect on the colitis and that the fever will continue to decrease.

Here is a rather old study about Danazol in MDS patients, where 72% got an increased platelet count. The problems are the adverse effects - as you are aware of - since the drug is a modified testosterone. http://onlinelibrary.wiley.com/doi/1...10209/abstract
Kind regards
Birgitta-A

Danazol
 

Thanks Birgitta...seems like it's worth a try with success #'s like that!

Danazol
 

Hi Cheri,
Yes, since our diseases are so different and still very little is known about what treatment will have positive effect for the individual patient Danazol is worth a try. In any case you will probably feel stronger.
Kind regards
Birgitta-A

It is so true---MDS is different in every single person and treatment is so tough to figure out! There isn't one protocol to follow and that is what is frustrating!
This forum is so helpful....I am so encourage by people who rally back after what seems like an impossible situation...

This Oct 16 will be my 2 year anniversary of my AML diagnosis........and I am really grateful to still be here! From being told, several times, I had 3 months to live!

Life expectancy
 

Hi Chery,
It is difficult to understand how someone can believe that he/she can tell how long a person will live - I think it is enough to give information that it is a serious disease. You are a true fighter but some persons can be very depressed if they are told that the prognosis is so bad.

I have had this dx 5.5 years now. My doctor knows that I read about the disease at the net and has never discussed life expectancy. 2006 when I got my dx the info about life expectancy in MDS was already 9 years old and I understood that much had happened since 1997.

2009 I participated in a one day education for MDS patients and Professor Eva Hellström-Lindberg (a specialist in MDS) told us that many patients lived much longer because of better treatment.

Hope you will soon be well enough to be able to leave the hospital!
Kind regards
Birgitta-A