Fevers, anyone?

[cheri]

Hi all,
Well, as I have said before I have been fighting a fever since Labor Day weekend. Spent a week in the hospital; no change. Had been been 99-101, but yesterday evening went up to 102, when I took 2 XS Tylenol and sweated it out in 2 hours. Woke up at 3am to 103.8 and was like....

So, took 2 more Tylenol, laid awake pondering what to take to the hospital, sweating it out and waiting till 6 am to call my doctors, and a friend to drive me to ER. (Hey, why should everybody have to be up at 3 am?)

Surprisingly, both my Oncologist and Inf Dis Drs said "don't go to hospital"...
Just get outpatient cultures on Monday. Now, I thought this fever was pretty significant, but I guess they figure since I've done this dance before, just to lay low, rather than risk being in hospital, with serious infection risks.

I had no rigors, an am basically symptom free, except for the fatigue associated with a constant fever and I guess that since these Drs both know me pretty well by now, they don't see a problem with taking it as it comes and using common sense. Since I live alone, I worry about it getting too high to risk a seizure or something....but althought I did survive a 107 fever once, due to sepsis......but that created major body havoc..do NOT want to go back there..

I would like to know if anyone has experienced anything like this, or has any input. I consider this mostly a neutropenic fever, as there is no known origin.
I am supposed to start Revlimid and wonder if this fever will be an issue.
And fevers in general, I am having a hard time accessing any good info on the web....just generic stuff. (Any of Birgitta's magic resources? )
How high is too high? What serious symptoms should I look for? Could this be viral? (my suspicion)
I keep on drinking vitamin water and eating well and hoping this too shall pass!
Thanks!

[donna j.]

Don't laugh me out of the ballpark, but have you considered menopause? Night sweats were the only symptoms I experienced. I don't know if any of your meds include hormones which could perhaps cause menopausal symptoms?
Hope you feel better soon and for what its worth, I do enjoy reading your postings.

Donna

[squirrellypoo]

Cheri have you got a line installed? I had a low-grade fever for weeks that just wouldn't respond to anything, and it magically went away when they removed by Hickman line as a last resort. It turned out there was a stubborn infection lurking in there that just wouldn't shift, and didn't show up on the cultures.

[cheri]

Hi Donna and Squirrelpoo---
I laughed about the line "for what it's worth"....seriously, does my life read like a Spanish soap opera or what? It's unbelievable! Yesterday, instead of being in the ER like I expected, I took a walk on the beach and sat in the sun by the marina. It was a warm, "bonus day" here in NJ and I figured the fresh air would do me good....and it did!

I went thru Menopause over 7 years ago....but this time I don't have the mood swings! And no, no pic line, port or anything else that would suggest an easy fix. I recently started on a male hormone...could that be it? Dr says no, but I will check that out.......

Last nite, around 3 am, my fever spiked at 103.6 and I thought, let's see what happens. I didn't want to take Tylenol. Eventually it broke on its own around 5am...but I was nervous....and praying hard to see the morning light!

Stay tuned and I really hope we can solve this mystery once and for all!

[slip up 2]

Cheri...do you think the Ex-Jade might be the cause...we have taken my spouse off it, for a few days at times then started back up with a lower dose and worked back up to the 1500....just my thought...

[Birgitta-A]

Hi Cheri,
Too bad with fever during so long time! There must be some reason probably some kind of infection - perhaps a virus as you suggested. Here is info about Neutropenic fever: http://www.chemocare.com/managing/fe..._and_their.asp

I am very afraid of infections (like you) and live like I have neutropenia though my WBCs now are 5.1 - I take Neupogen injections once a week.

I don't know if fever is a contraindication for Revlimid - I hope it isn't.
Kind regards
Birgitta-A

[cheri]

Actually, I haven't been on Exjade lately, as we stopped in when I was having my GI issues....but I don't think that was the problem anyway.

The funny thing is, the fever doesn't make me feel "feverish"--it just goes up at night, and causes night sweats. Other than feeling tired, I'm symptom free!

For some reason, I think it is "part of the process"

Neupogen totally stopped working on me--I took it for a week straight and never got over .5

Wondering if Neulasta may be an option, will find out today....

[Lou K]

I am new to this forum and glad I found it. I have been diagnosed with Telomere Disease by NIH. I have Pulmonary Fibrosis and Aplastic Anemia. No liver problems at this time. They have concluded through autopsy reports and other sources that my dad had this too. He died at age 47 at Cleveland Clinic in 1969. His death was a mystery until now.

Regarding fevers, yes I have them. I call them my flare ups. 99-101 degrees and just feel terrible with them. Sleep and time makes me feel better. Many times during the fevers I go on Bactrim. My father had the same pattern according to my mother.

I am going into the protocol at NIH for this disease and will be treated with Danazol. Any thoughts on this drug? I am on predisone (10) and Imuran (50). They seem to allow me to have a normal active life. My sister and my daughter are being tested for the mutation.

Any other people in the Telomere Protocol?

[Julianna]

I'm interested in what happened with your fevers Cheri? I'm struggling with them at the moment. How are you?

Sorry if you've already answer this in another post.

[cheri]

Hi Julianna

Well, it's an ongoing challenge. The last longest hightest temp culminated in pneumonia, early this month; since then I still have temperature fluctuations and terrible night sweats (change clothes 4-6 times/night). I am currently on Levaquin, second round since hospital, and my white count is so low, that may be a contributor. Actually, no one can give me an explanation and I just take it one week at a time. It is quite frustrating as the presence of a fever incicates there is something brewing, but symptoms are often not present.
Hope that helps!