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  #1  
Old Sun Apr 24, 2016, 06:07 PM
Greg H Greg H is offline
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Fever - Take tylenol or no?

Hi All!~

This is a question is expect I will ask my provider tomorrow. But I am curious.

Is the proper response to a fever above 100.5 (mine is currently 101.1) to take Tylenol to bring it down? Or should I let it rage to see how far it will go, meanwhile contacting my Dr.'s office?

I realize that's a pretty basic question, but I have only recently begun to suffer from fevers. Not neutropenic as of Thursday, but that may have changed.

Thanks!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #2  
Old Sun Apr 24, 2016, 06:38 PM
Sally C Sally C is offline
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Hi Greg,
When Don was neutropenic (neuts 0.0) his oncologist said if his fever went over 100 for us to go straight to ER which we did. I would call your doctor right away and see what they say. Don ended up in the hospital with 24/7 antibiotics for 2 weeks and at home twice a day in his picc line for another 2 weeks. To me the question of Tylenol is secondary to getting in touch with your doctor immediately.
I wish you the best!
Sally
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  #3  
Old Sun Apr 24, 2016, 11:37 PM
rar rar is offline
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My refrigerator magnet says do not take fever reducing medication. If temperature is 100.4 to 101 for an hour or above 101 call the transplant center for instructions. I had 101.5. They said go to the ER. In less than 5 minutes I was in a hospital bed. I stayed there for 2 months. A fever is not to be ignored

Last edited by rar : Sun Apr 24, 2016 at 11:41 PM. Reason: spelling
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  #4  
Old Mon Apr 25, 2016, 08:25 PM
Greg H Greg H is offline
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What to do about fever

Thanks for all the great advice on why you call the doctor, or go to the emergency room, when you have a fever.

Mine hit 102.6 yesterday and 102.8 today. I called my doc and went to the emergency room this afternoon.

I saw my oncology nurse, Stacey, this morning, and she provided a most excellent dissertation on why you call the doctor and go to the emergency room with fever.

Her advice had two main points:

Acetaminophen/ Tylenol and other fever reducers
Stacey said the heat that is produced by fever is actually a trigger for the attack of the B-cells and T-cells, so taking a fever reducer can short circuit the immune response -- particularly among we folk who have junk for an immune system anyway.

Going Septic
Whether or not you take a fever reducer, at some point the fever may well break and your temperature plunge rather quickly back to normal or below. This does not necessarily indicate your immune system has won the battle. Instead it can be a sign that you have gone septic -- your immune system has simply retreated to build up reinforcements and try again later. It appears this is what happened to me, because yesterday's fever re-emerged 24 hours later.

So. Got a fever? Call your doctor or go to the emergency room.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #5  
Old Mon Apr 25, 2016, 08:41 PM
Sally C Sally C is offline
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Hi Greg,
So glad you're ok. I've been checking all day to hear from you.
Some information for those who are severely neutropenic. When Don's neuts hit 0.0, our oncologist gave me instructions which she wrote on his CBC. As I mentioned, she told us that if his fever hit 100 to go to the ER. Her instructions to me were to show them his CBC, tell them to get the on-call hematologist STAT, start the antibiotic she named (don't remember) STAT, and tell them to call her STAT. When we got to the ER I was totally in control and very calm. Had she not prepared me I would have been a nervous wreck. Also, when you go in the ER throwing the word "STAT" around, they think you know what you're doing .
Take care Greg and keep us posted.
Sally

Last edited by Sally C : Tue Apr 26, 2016 at 10:32 AM. Reason: Can't spell :)
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  #6  
Old Tue Apr 26, 2016, 02:31 AM
DanL DanL is offline
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Greg,

The quick answer - have the bottle of tylenol primed and ready to open. Let the fever rise - not much over 101, call the on-call doctor and let them tell you to eat some tylenol. They will probably tell you to take it every four to six hours and come in if it reaches a temperature over 102.5.

The other thing that has worked for me in the past - 32 ounces of iced down water with lemon - my mds fevers were almost always dehydration driven.

Feel well.
dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #7  
Old Tue Apr 26, 2016, 09:08 AM
Greg H Greg H is offline
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Hey Dan!

Thanks for that advice. I do not have time to be hanging out in the hospital, and would rather they gave me all those antibiotics as an outpatient. So, I'll discuss all that with my fantastic oncology nurse and see if we can avoid this hospital stay next time I have fever.

The problem with hospitals is that everything moves at a glacial pace. I arrived at the emergency room last night at 5:00 pm and finally got a bed upstairs at 12:30 am. Based on past experience, I'll probably have trouble getting out of here today, as well. And I have a newspaper to get to press.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #8  
Old Tue Apr 26, 2016, 09:10 AM
Greg H Greg H is offline
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Quote:
Originally Posted by Sally C View Post
Also, when you go in the ER throwing the word "STAT" around, they think you know what you're doing .
Sally, you're a hoot!

I love that STAT advice. I'm going to STAT them until they squeal, next time!

Take Care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #9  
Old Tue Apr 26, 2016, 12:09 PM
Marlene Marlene is offline
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Greg....do you have a central line or PICC line installed? If so, they usually want to culture it for a potential infected line/port. An infection in the central line has a a direct path to your blood system and heart making you much more open to sepsis. They would culture the lines before starting any antibiotic because once you start treatment, the cultures usually won't show anything. And in some cases, they'll pull the line if there's an infection in it.
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  #10  
Old Tue Apr 26, 2016, 02:31 PM
DanL DanL is offline
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Greg,

As for the antibiotic referred to, I think that cephelaxin is the immediate drug of choice, for IV and oral administration. I agree about the hospital stays. Also, I have had my central line replaced once due to suspected infection. The line came back clean, but the persistent infections that I was getting went away with the removal and later replacement, so it seems very much like cause and effect.

Good luck getting the paper to press.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #11  
Old Sun May 1, 2016, 05:50 PM
marmab marmab is offline
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Good advice from everyone here. Advice I should have taken after my transplant.

I began running a fever two months post transplant (one month after being discharged from the hospital). I (foolishly, in hindsight) took Tylenol for several days to keep the fever down before finally admitting to myself that I should consult my doctor. It turns out that I had a serious case of disseminated nocardiosis (a rare infection, with lung and brain involvement in my case). I was admitted to the hospital immediately for three weeks of IV antibiotics, and then after discharge I had to mix and self-administer IV antibiotics at home for two more months (3x/day, two hours per time). Inconvenient, to say the least. And, because this type of infection can lurk in the brain, and because my immune system is not fully reconstituted, I have to take Bactrim every day, and probably will for the rest of my life. (I have low CD counts -- my CD4 is well under 200 -- partly because of the ATG treatments I've had, and partly because Campath was used as part of my conditioning regimen before transplant. From what I've read, reconstitution of one's immune system, especially in an older transplant patient and one who has had these treatments, is a complicated business, and complete reconstitution may never happen. And with Nocardia bacteria possibly lying in wait in my brain, I have to stay on the Bactrim for prophylaxis.) My hope is that one of these years my CD counts will normalize, or at least rise enough to get me out of the danger zone. Interestingly I don't get sick. The immune system is a complex thing.

So...long story short, it is wise to take fevers seriously.
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Marmab, F62, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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