17 replies to this topic

[kat73]

I'm on Day 5 of the worst flu I've ever had and it isn't getting any better.  Every day I think I will start to get better and I don't.  I had the flu shot 9 days before I got sick, but I'm assuming that's a coincidence.  I could accept the process, but it doesn't seem to be going as usual (in other words, pre-CML).  It seems to me my body is not putting up much of a defense - it's funny to say that, but I can sort of sense it.  My fever wasn't all that high for feeling as lousy as I did, and it's gone now.  The usual flu symptoms of chills, dizziness, extreme need for sleep have waned a little, but I don't have that feeling of getting slowly better:  wanting to eat something, feeling a tiny bit of energy, that stuff.  In fact, I feel worse.  My whole neck, jaw, tongue, throat, ears are so exquisitely painful I can't swallow without steeling myself first.  The coughing is endless, continuous, racking.  Each time I cough or sneeze I feel like I'm bending my eardrums out the other way and I'm like a frog whose eyes go back in his head when he zaps a dragonfly.  Except that mine then come back out and roll across the floor.  After each coughing bout (every 15 minutes round the clock) I think I'm gonna pass out.  I am utterly worn out.

 

Here's the thing - I don't trust my post CML body to do anything right. It betrayed me big time.  When my dog bit me I ended up in the hospital for 11 days with an infection.  Judging by the bite and how I immediately treated it (and went in and got it seen to), it seems to me that would never have happened to the old me.  When I was in the hospital I asked about my specific situation and I got such a confusing answer, I just decided I was too dumb to understand and let it go.  I have an ANC of about 1.5 most of the time and everyone always tells me that's adequate.  But then they say something like, it depends on how well those WBCs work.  So, I dunno.  I was always a person who got over any infection perfectly normally; now I seem to be brought low fast and thoroughly.  It took FOREVER for the IV antibiotics to get me over the dog bite infection.  And now, I can't help feeling that I ought to be over this virus by now, and even if there's bacteria involved, I should be able to handle them.  But I'm just not getting any better at all.

 

One last confusing kvetch:  when I told doctors that I hadn't had a cold or flu in years, nor a headache, they said that could actually be a bad thing because it meant I didn't have enough of an immune system to put up a noticeable fight.  This makes no sense to me.  If you are exposed to the cold germs, but you don't get sick, doesn't that mean that your body fought them off before they could invade?

 

Sorry, y'all for the length of this screed.  I wish doctors made house calls.  I need my mother.  I need a magic lollipop.

[dede5]

I'm not sure about your CML history. I have bad chemo brain fog so can't absorb a lot of information. I just want to tell you that for me, from about a year pre-dx, to about 2 years post dx, I stayed sick most of the time. I caught every bug that came along, and it would stay around for 4 or 5 months. It would go away, and then come back with different symptoms. It was a miserable time and I feared I would have to live like that for the rest of my life, because of CML. I'm happy to say that, now that my lab work is more stable, I haven't had any kind of bug for the past 3 years, even when everyone around me is dealing with them. I've wondered if the TKI is working to my advantage in that way. I don't have any medical knowledge to offer you. Just thought it might help to know you may not always have to deal with this. Hope you feel better soon!

[Tedsey]

kat73,

 

I am so sorry you are feeling so horrible!  Despite your miserableness, it appears you have kept your sense of humor!  LOL  Anyway, I was dx with CML six years ago.  Ironically, I have not had the flu (but I did get a bad pneumonia a week after dx).  I get a stomach bug every year that just wipes me out usually for a whole week (and I cannot really eat for a whole month after--so not looking forward to this).  I do not get colds very often (maybe 2 since dx).  When I do, they are mild and I get over them in a couple of days.  And despite my very low platelets, I seem to heal at a normal rate.

 

So, I don't think it is the CML (unless you have been recently dx).  You probably got a very bad bug.  If your bloods are stable and your ANC is normal, your immune system is probably working well.  

 

Have you been to the doctor?  Hopefully it is not pneumonia.  That can linger in a normal person (as you can see, I no longer consider myself a "normal" person--whatever that means, but even people who don't have CML can get very sick with a lasting bug).

 

Please take care.  I wish you a quick recovery.

 

Teds

[Trey]

There are 4 day and 10 day types of flu.  Since you do not have a fever, it does not sound like an emergency issue.  I would give it a couple more days since it sounds like you have the long version.  The flu symptoms may just be moving through their predetermined route.

[Tedsey]

I never had a fever with pneumonia.  But Trey is right.  Some flu viruses linger.

[Melanie]

Kat73,

Ugg, so sorry you're feeling so miserable! Sounds like you've got a really bad flu like what's been going around here. One of our friends had it for about 2 weeks, just as you described and there's been some co-workers of my husband's that have had a similar version. It's just awful!

Thankfully, it hasn't hit our household yet. We keep a pretty low profile though and constantly was our hands. With my low counts, we're pretty careful, avoid crowds, limit public places, and sanitize when possible. Friends and family are very good about keeping their distance if they're sick or have a cold, even the grandkids. We do a lot of air hugs and blow kisses. 😊
Hope you're feeling better soon. Keep an eye on the fever and sleep as much as you can. Hopefully in another day or two you'll be feeling better!

[kat73]

Thanks, everybody, for your kind words.  I did go in to the doctor yesterday and he right away saw a really bad-looking ear, and heard some lung sounds he didn't like.  He thought I did NOT have the flu, but was thinking pneumonia (as you were thinking, Tedsey) and an ear infection.  Did a chest x-ray - no pneumonia, but some pleural effusion around the other lung.  Again, no more than a shrug over this discovery, which I guess I will get used to.  He also said I had a fever, which I was unaware of. ( I had gotten one 99 reading and decided the fever was going, so I stopped taking it. Ex-mothers should know better than this.)  He didn't think I had the flu based on no body aches whatsoever, not much in the chills department, and a few other details as to how it came on or something.  I don't care.  My main goal was to not waste a minute if I had something bacterial, so this visit was justified.  He thought I probably had mycoplasma something-or-other as the main culprit. And, mbrown, he asked right away, have you been around little kids lately?  I said, oh yeah, just got back from a weekend in Ann Arbor with the 18 month old and the 4-1/2 year old, and they had been in their usual scantily-clad, streaming-nosed, fussy waking at night crying state, which their parents tell us is just life with daycare in a cold country.  Anyway, he gave me a z-pack 5-day course of azithromycin.  I started the first two pills last night, and I have to say I don't notice much yet.  My bad ear has finally "crackled" a couple of times, and I'd say the coughing bouts have gone to half-hourly, but my eyes are still stuck shut and I feel pretty rotten and washed out.  No appetite whatsoever, and can't eat.  Swallowing is a tiny bit less painful, I guess, now.  Thanks to you all for caring.

 

I did ask this guy the same WBC question, and got that same weird answer:  yes, you've got enough "soldiers" but no one can know whether they're any good at fighting.  So, what do I do with this answer, Trey?  If I'm going to start getting sick like this all the time, well, there go all my hard-won emotional and mental defenses I've built up to try and accept CML.  I never counted on being sick all the time.  Just what is going on with our immunity and defenses, Trey?  Can you give me an overview of how my soldiers might be slackers and what could be done to buck them up?  I'm not a big fan of supplements.

[Trey]

If you insist on being that close to multitudes of germ laden munchkins, the best immune system in the world will not keep you well.  At some point quantity overwhelms quality.  Just join the snotty, scantily clad group and go with it.

[kat73]

Trey - Are we, or are we not, immuno-compromised, by virtue of having CML?

[Trey]

99% of CML patients are NOT immuno-compromised any more than the general population. 

 

1% maybe when ANC falls well below 1.0 but that is not "by virtue of having CML", but rather the drugs taking the ANC too low.  Or in late Blast Phase where all neutrophil WBCs are immature (blasts) so do not provide adequate immunity. 

 

CML primarily affects the myeloid line, not so much the lymphoid line, so lymphoid immunity (T-cells, B-cells, NK-cells, etc) generally remains unaffected.

[kat73]

Thanks, Trey.  It feels like it's been so long, I'm beginning to fall prey to catastrophic thinking - like, OK, so my lymphoid guys are all screwed up - maybe I've got something even worse than CML.  I try hard to fight this!  But, if I'm not getting any better (and actually I feel worse today than ever), should I ask the doctor specifically about the T-cells, B-cells, and NK-cells?  Is there a test that shows them?

 

But, truly, thanks for the explanation.  And the humor - it didn't sound like I appreciated it, but I did.  I'd have to look at the map to count exactly how many states I am away from the grandkiddies, but perhaps they're not quite enough . . .

[Buzzm1]

kat73, sorry to hear that your illness is persisting and possibly worsening ... so much for the 10 day flu ... hoping your Dr. has a solution.

[sunshineC]

Hi Kat73.  I have no words of wisdom or intelligence, but when I saw this was happening to you, I just had to respond.  I feel so bad for you.  You have helped me in so many ways, you have no idea.  Every time I have initiated a topic, asked a question or just complained and whined about whatever like there's no tomorrow (cause I do that so well!), you have ALWAYS made me feel better about whatever was going on.  I relate to you in so many ways.  I think the same way you do (which I'm not so sure is that good for either one of us, but it is what it is, right?! LOL!).  I have wondered about those same things and struggled to understand.  

Anyway, I just wish there was something I could say to brighten your day.  Hope you feel better soon.  I will say a prayer. 

[kat73]

SunshineC - What a nice thing to say! - makes me tear up.  Thanks.  Yes, I think you and I are among a bunch who "think alike" - you have always helped me, too.  I am beginning to get a little panicky, but fighting it.  I'm starting to think all those stupid things like, maybe there's even more wrong with my bone marrow than they thought (never have had a BMB) or maybe this is the next flesh-eating bacteria out of Africa or something and I'm the first to get it.  But, pretty sure the doctor would say, "finish the z-pack and wait a couple of days."  I'm trying to tell myself what I would tell someone else.  It really is getting kinda surreal.  Anyway, thanks again.  So much.

[kat73]

This AM, finally, the clouds have parted.  Feel like I'm on the mend at last.  So, I guess that means I have some sort of an immune system.  Wow.  My parting advice:  stay away from them rug rats . . .

[Buzzm1]

This AM, finally, the clouds have parted.  Feel like I'm on the mend at last.  So, I guess that means I have some sort of an immune system.  Wow.  My parting advice:  stay away from them rug rats . . .

kat73, glad to hear that you are finally beginning to see the light at the end of the tunnel .... 

[hannibellemo]

kat,

 

So glad you're feeling better! It was a long time coming.

 

I go through 3 phases if I get really ill, which doesn't happen very often, thank goodness! (I only go through the first 2 phases when I have gastroenteritis.)

 

Phase 1 - I feel so bad, I'm afraid I'm going to die;

Phase 2 - I feel worse and I'm afraid I'm not going to die; and

Phase 3 - I don't feel so bad anymore so why the hell am I not well? I must be dying.

 

I'm either healthy (relatively speaking) or I'm dying. There appears to be no in-between with me.  

[kat73]

So true!  It gets confusing.  Now that I'm coming out on the other side of this, I do look back and reflect that there really is a lot of that anxiety underneath the just feeling bad - the anxiety of, "Is this the CML impacting things?"  "Am I a 'regular' person here, just sick, or is there something more going on?" and "I'm never going to get well, this is going to be the way it's always going to be, because that's what happened when I got CML - nothing ever was the same again."  All that stuff is still - still! - under there in a dark corner.  They gave me a short course of prednisone to reduce inflammation so the tubes will drain the fluid - this seems to be helping.  Two weeks of my life GONE, but, OK, I'm back anyway.