26 replies to this topic

[CallMeLucky]

Has anyone else found that when they get a typical cold they run a fever, where they never used to prior to CML treatment?

I never used to get a fever unless I was really sick with a flu or something like that.  Nowadays it seems if I get the sniffles, I start to run a low to medium range fever.  Last night I started to feel congested, nothing crazy, clearly a head cold (which I am so sick of but since I keep doing children's activities with my kids and their friends it seems I am always exposed to someone who is sick).  By this afternoon, I'm up to 100.6, achey and chills.  I can tell I am not that sick, it is just a cold and I am getting tired of running off to the ER every time I get up to 101.  I know if I don't take anything I will hit 101 in a couple of hours, I can feel it.  So I went ahead and took two Advil to bring it down and also because I have a sinus headache.  My doctor says go to ER if it gets to 101, but I am just so tired of sitting there for hours just to get a CBC.  It is emotionally, physically, and not to mention financially draining.  I figure I'm going to give it a day or two and see if it stays on the lower end and burns itself out.

But to my original question does anyone else find that the most minor cold causes a fever when it never used to?

[mariebow]

Hi! with CML and you get a fever reading 101 or over 101 are we supposed to go get check out? would like to know

[CallMeLucky]

My onc told me when I was first diagnosed, if I run a fever to call in.  The nurse said "over 100".  If it is 101 or higher they always tell me to come in for a CBC.

[mariebow]

thanks  it is good to know.  I do not think my onc or nurse mentioned this.

[Happycat]

Nope, no fevers here. Haven't been sick much either, though.  Still, the half a dozen times I've felt I'll enough to check (simple paranoia), I was always pretty much normal, no higher than 99.6.

Maybe I'm just a cold fish. The big temp change I notice is how cold I feel. I always have the heat blasting on me at work. And I need to wear layers at home, too. CML or just aging?  Don't humans as they age produce less body heat?  I remember a discussion about pope John Paul II as he was dying. They said he had a fever of 100 or 101 and the doctor they had on said that was really high for an 80 yr old man.

So maybe I'm just getting old and cold together.

Traci

[pammartin]

I seem to run a low grade temp often.  When I go for labs they always take my temp and blood pressure, if I have even the hint of sinus drainage or cold mine runs between 99 - 100.  At first they thought it might be the heat of the building, riding in the car, or heavy coat, but as the weather has warmed it seems to be the same.  Until CML my temp never went over 97.5, I was always an oddball on the low side, now I am still an oddball but in the opposite direction.

[CallMeLucky]

So now I am starting to get more concerned.  My temp is not going away, in fact it is going up.  I am now avg between 100 and 101.  If I take Advil it keeps it down to about 99.  I feel like if I stayed off the Advil it would gradually climb up over 102.  I do have a decent amount of congestion and I have started to cough from the nasal drip.  My chest feels clear and everything else looks and feel normal except for being quite achy.  I figure I'm going to have to go in to GP tomorrow morning and get checked out.  I'm sure they'll do a CBC and then I can stress about that.

I am really getting so tired of this.  I can accept that I have CML and I accept that I have side effects, but it makes me insane every time I get sick and I start to run a fever.  For some reason I have it stuck in my head that fever is this horrible thing.  So for those who know, what exactly is the risk for us with fever?  Why are we told if we run a fever we have to call in and go get a CBC?  What is the concern here?

I am so tired of being stressed.  My wife's father is back in the hospital yet again.  It seems he goes in every two weeks now for another issue.  Every time my wife has to run off to go be with him.  I 100% support this, but it is not fun trying to care for an entertain 2 young children when feeling the way I do.  The worst part is that I have no real issue with being sick, I can push through a bad cold or the flu, but I keep getting that crazy voice in my head telling me "this is it, you're going to die".  I try to be reasonable and rationalize it but it is driving F'ing bananas.  So if anyone can tell me what the big deal is that would help me get the unknown out of my head and allow me to try and rationalize enough to rest. 

Can't wait until 8:00 when I can put the kids to bed.  I know I would crash immediately but I have a final exam tomorrow night that I am supposed to study for.  I have work tomorrow so no time to study during the day.  Of course if I have a fever I'll probably have to take a sick day, then contact professor and see what my options are.  I just wish I could get some peace of mind for a period of time.  I am coming up on my two year anniversary and I am supposed to be feeling good about the fact I have had pretty good results so far, but my last PCR went up and now this fever.  I know it will probably be fine, but after my brother in law dying and now my father in law is going to die very soon, I just can't bare the thought of me dying and what that would do to my wife and kids.  Damn I hate the way the mind can run away with BS like this.

I'm done venting, thanks for listening whoever is out there and if anyone knows why having a fever would be a problem for someone with CML who is supposedly in MMR, I would like to hear it.

[simone4]

Lucky, you sound so upset I have to reply.  High temps in people with leukemia

(or anyone) screams of infection.  With leukemia, infection can get out of control

sometimes very quickly and pneumonia, for example, can develop. 

Could you call your doctor after hours?  I have done this and was reassured

about some issue until I could see him the next day. I'm glad to know you

are seeing  your GP in the morning.  You are not dying, you just feel like

you are.

After the kids are in bed, could you take an Ativan or xanax?  Get rx for

one or the other tomorrow.  The stress can not be fought through without

help sometimes.

Take care.  ( I hope my reply does not sound harsh.)  Sometimes

when I speak in English it appears that way.

Oh yes, a tepid bath may help.

Simone

[Pin]

Just my understanding, but I think the risk with fever is probably more of a problem if your counts are low - I imagine that what they are concerned about with us is that an unchecked infection might get serious if our immunity is not working so well. If it is working well (so far as we can tell) I wouldn't stress about it more than usual. I wasn't told to get a CBC every time I have fever, just to see a doctor. That said, I would probably go to the doctor if I had a fever for several days even without CML - I don't get fevers very often though. Again, my understanding is that it's your body's way of getting rid of some kind of infection (viral as well), and it theoretically means your immune system is doing its job Probably best to get checked out anyway just for peace of mind. I hope you get some relief soon, you have had more than your fair share of stress. Also I hope that I am making sense through my ramblings...

[CallMeLucky]

Thanks for the responses - fever got up to 102 so I called my onc.  On-call hem-onc called me back and we talked for a few.  She said I need to come in and get checked out.  She says she doesn't know me but I sound like crap over the phone and she is concerned I have some kind of infection, possibly pneumonia.  She did say it wasn't so much an issue of worrying about CML but rather that I am "a cancer patient" and I am in treatment and they take risk of infection very seriously.  So I am waiting for my wife to get home and then heading over to the hospital.

I really hope this doesn't turn out to be something ugly.....

[Pin]

Oh Lucky - I hope it's not too bad as well but I am glad you are getting checked out, especially if they suspect pneumonia, which can be serious for anyone.

Let us know how you go xxx.

[pammartin]

Keep us posted when you can, I am glad you are heading to doctor.  We will be waiting to hear from you, positive thoughts headed your way.

Pam

[Susan61]

Will be waiting to hear from you when you get back from the hospital.  You have everyone's positive thoughts for this to be something that just requires a antibiotic for a short time to knock whatever it is out of your system.

Susan

[LivingWellWithCML]

Keep us posted, Lucky!  We want you back at the top of your game soon.  And I agree with Simone..no shame if we have to deal with some anxiety.  I have found that it is helping me out a lot!!

[ChrisC]

Given everything, including the nurse saying  that you don't sound well, it is very good news that you are going in to be checked out and given the proper attention. Sharing of your story is helpful, too, so others can learn from your experience. How generous of you to take the time for US when you are the one with the high fever! Get well soon.

[CallMeLucky]

Well it looks like I have the flu.  I can honestly say I didn't see that coming, it did not feel like the flu, but now that I know what it is, it does kind of make sense.  Good news is that my blood counts are all normal and my chest x-ray is clear.  I was surprised the counts were normal, I would have expected my wbc to be elevated but the doctor said it is not uncommon to have normal wbc with flu.  So I feel a little better knowing what I have but I guess I am not out of woods yet.  They kind of made a big deal at the hospital.  I wound up going to the cancer hospital instead of the local ER and I am glad I did.  After talking to the on-call doc she really wanted me to come there.  She said they had all my records and that if it were anything serious they would be better equipped to deal with it given my CML.  I'm glad I did but while they tried to not make a big deal of it they did say that I am "high risk" and this needs to be monitored very closely.  They want me to get cultured every 24 hours and keep a close eye on it.  They gave me Tamiflu, which is a blessing and a curse.  I just woke up about an hour ago with really sick stomach.  I did not have that prior to taking the Tamiflu and I guess despite my conventional wisdom thinking that "stomach flu" is really what happen when you get the flu, typically stomach problems are not an issue with influeza.  It looks like the Tamiflu is making my stomach a wreck.  Separately my cough is starting to hurt.  So it looks like I am going to be laid up for a few days at least; praying this doesn't get too bad and most importantly praying that my wife and kids don't get it.  I spent the whole day with them, preparing their meals and everything.  Neither one of them got the flu shot this year, although I don't know how much that really makes a difference, because I did get the flu shot.

Test results for Influenza were also a bit ominous.  It just says "Influenza Virus Type A Detected, Subtype H3, Very abnormal".  I asked what "very abnormal" meant and the nurse just said it mean they detected a lot of it in the sample and that I "really had the flu".

I'm going to be out of work for at least a few days probably a week and it does not look like there is anyway for me to make it to class to take my final exam, not that I feel up to it anyway.  Will have to contact professor in the AM and see what we can work out; hopefully he has a compassionate side.

So at the end of the day it is not related to CML, but the fact I am in treatment for CML makes me "high risk" and I'm just going to have to wait and see how this plays out.  I'm just going to try my best to get through it, hopefully my body is up for it.  More than anything else aside from just not being a wuss, I really have to put on a brave face for my wife.  The whole time I was at the hospital I was thinking about my wife sitting at home thinking to herself "I just buried my brother a couple of months ago, I just came back from sitting in the hospital with my father all day who is dying from brain cancer, and my husband with leukemia is in the ER".  I tried really hard to down play it for her.  I called her up and said "good news, it's the flu".  While neither of us consider it good news I think she was relieved it was not something related directly to CML.  Time to soldier up and get through it.

Thanks for the support and responses it really really helps to have people to discuss this stuff with.

Hope everyone else is feeling pretty well.....

[pammartin]

Lucky,

This sounds like crap, but I am glad it is the flu, sorry you have to take the meds that make you feel even more ill, guess the only good part is the flu does eventually go away. High risk seems to be something we hear often after the CML, sometimes it is down right annoying and doesn't make it any easier to process.  Heading to the cancer hospital was a great choice, as you wrote they know you, have all your records and there is not that calling back and forth between docs to see what meds you can safely take and which ones to stay away from.  Your professor had better be compassionate, and with dr orders I believe they have to give extra time.  Just curious, do you have an ADA associated with your education, it really helps in situations like that.  Thanks for the update, and feel better soon, keep us posted, we are all here for you.

Pam

[Susan61]

Hi Lucky:  Even though your still pretty sick, its always a relief when you find out what it is.   I am sure your wife feels relieved too.  The Unknown Is Always Worse Than The Problem Itself.  Once you find out what the problem is you can move on to take care of it.  I think we all get ourselves into such anxiety when something is not right.

They do take a lot of caution when they find out you have Cancer.  When I was admitted last year for the blood clot in my  leg, they immediately put me in the Oncology Wing when I finally got admitted with a woman who was dying.

I had my ultrasound of my leg, and they told me I had to get to the hospital ASAP.  Not to drive myself.  Well, I got there by myself so I went home and packed what I wanted to bring.  Then my husband took me to the hospital in a Ice Storm, and we get there and had to sit for 2 hours which is the worst thing you should do with a blood clot in your leg.  Then once they got me into a bed, I was not aloud out of bed even to use the bathroom.

     I think these hospitals can scare you for no real reason.  Your home now, and I am sure you will start to feel better in a few days.  You even had a FLU Shot, and got the FLU anyhow.  Keep us all updated on how your doing.  Hope you get to take that exam also.

Susan

[CallMeLucky]

Spoke with my doctor's office and they were more relaxed about my situation then they were in the ER.  In the ER they used words like "high risk" and said if I still had a fever in 24 hours to come back.  I laughed and said "you told me I have the flu, I am going to have a fever for the next few days at least".  The ER nurse said their protocol is to run a culture every 24 hours.  I guess for people with really compromised immune systems that is what they do.  When I spoke with my doctor's nurse she said what I said "you have the flu, we know you have the flu, you are going to be sick for a while."  She said to give it a few days and call them if it seems like it is getting worse or if I still have a fever after I finish the Tamiflu.

Nyquil is helping a lot, managed to get a good nap in early today.  Professor said he will mark my course grade incomplete and that I can take the test next week and then he will record my grade.  So that's about it for now.  The flu stinks, but like we say, it can always be worse.  I felt very bad last night while sitting in the ER waiting for my test results; there was someone in one of the beds next to me who obviously got some really bad news.I could not hear the details but they were crying a lot.  This sickness is so horrible.