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My Very First Cold/Flu


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#1 jrsboo

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Posted 31 March 2011 - 11:02 AM

Ok, I have been so isolated from the general population since getting diagnosed, that I haven't caught anything.........until now. 

I have a horrid dry hacking cough and can feel it getting worse and moving around to my head.  Should I see my PCP?  My onc?  Just ride it out. 

It seems like such a silly question, but husband is out on a mission with the Army, and I am sitting here alone wondering what to do......normally I would just go to bed for a week, pop up fine and get on with my life.  But now my life IS sitting on the couch with a blanket...............sigh.

Caroline

PS  Used Ambien for the first time last night.  What a great drug!!!  Slept like a rock, usually I sleep like a baby, you know, up every couple of hours, thrashing about, wanting something to drink, to use the bathroom, etc.



#2 CallMeLucky

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Posted 31 March 2011 - 11:26 AM

If you have a fever you should call your onc.  If it is just a cold then it's probably ok, but you may want to put a call into them anyway, I know mine always says call with anything to just let us know.  If your onc is like mine they will probably tell you to go see your PCP to get checked out.

Hope you feel better soon...


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 jrsboo

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Posted 31 March 2011 - 11:32 AM

Thanks Lucky,

I sent onc an email.  Usually fastest way to get a response.

C



#4 Trey

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Posted 31 March 2011 - 05:35 PM

Do what you would have done before having CML.  No difference for 99.9% of us.



#5 jrsboo

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Posted 31 March 2011 - 07:59 PM

Good to know.  There is a first time for everything. 

Caroline



#6 hannibellemo

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Posted 01 April 2011 - 06:47 AM

Caroline,

There is nothing worse than being scared and sick with a cold for the first time after a dx like ours! Being alone? Triple that! The general rule for us is if temp elevates and remains for more than a couple of hours at 100.5 or above call the doc. Colds generally don't generate a fever like that, but as we've discovered with these drugs, we all react differently.

Hoping for a speedy recovery and safe return for your husband.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#7 jrsboo

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Posted 01 April 2011 - 10:59 AM

Tanks ebrebody, it hads booved to by hed. .....

Dear Pat, Yes, it is very scary to be completely alone and sick.  The onc had scheduled a chest Xray since yesterday I had such an amazing cough, but overnight it has moved to my head and I sound like a frog.  No fever, so I cancelled the appointment.  I have such a wonky system and am so drug sensitive, and normal illnesses will completely knock me out, that I was a little worried.  Clearly I panicked.  But it really was a wickedly odd cough.  Oh well, I will see them next Friday anyway for a BMB.  And husband will be back the day before to take me.  Miss him terribly.  But this was a short mission, so I shouldn't complain.  So many others go for years at a time.

Dear Billie,

You seem like such a happy bubbly person, always ending your emails with LOL (doesn't that stand for "Laugh Out Loud"? that is what all the "slang" dictionaries say), thanks for the advice.  Although onc said not to take cough suppressents within 2 hours of Sprycel.  Not sure why. 

Going back to bed after I walk the dog.  Poor baby didn't get one yesterday, and surely he will keel over with sadness if he doesn't get one today.

Caroline



#8 lthouse612

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Posted 02 April 2011 - 10:29 AM

Hi Jrsboo...

Ironically, I'm laying here sick as a dog too.  I had some "time" since I'm not feeling well to do the things I'd normally do from day to day so I thought I'd come in here and read a little.  So, if nothing else, try to take comfort knowing someone else is sick with a cold at the same time out here in Virginia! lol  My last couple of day has been just laying down resting, drinking lots of fluids and dosing up on Nyquil before bed to help me sleep.  So far like you've said, sleeping has been very good and man I've never had so many dreams!  I actually woke myself up laughing... about what I have no idea!  Must be part of my memory issues!   Anyway, I did have a scheduled appt. to see my oncologist yesterday so she was able to precribe some antibiotics to help me out.  It's actually a sunny day today and I really would love nothing more than to be out riding my motorcycle or working in the yard.  I'm tired of feeling all stuffed up already!!! 

In other news.... I was also informed that the "plan" after I get well again is to switch from gleevec to sprycel.  It seems my body has become more and more resistant to gleevec over the last 4 years.  I hate change and it bothers me a bit not knowing what "new" side affects may be waiting but what can a person do...   Just have to wait and see I guess.  It is encouraging to some degree to read that some have done extremely well making this change so maybe, just maybe I'll be better off. 

Well I hope you are feeling better today.  I forced myself to at least take a hot shower to clear my head a bit so now maybe a nap!  Feel better!

Mark



#9 Susan61

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Posted 03 April 2011 - 07:47 PM

Hi Caroline:  Hope your feeling better, but if not you might need a antibiotic and a good cough medicine.  I always try to fight these things off, but when it goes into my chest I know I better get something before it gets worse.  I have such bad allergies, that it usually turns into Bronchitis for me.

Just do what Trey said, and treat it like you would any other time.  Fell Better.



#10 jrsboo

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Posted 04 April 2011 - 12:05 PM

@ Mark:  I am on Sprycel, and it seems from reading the boards that Sprycel is easier than Gleevec.  But as I haven't been on Gleevec, I can't tell.  I started on Sprycel.  I can go into all the lovely details if you want of what it was like............just let me know.

@Susan:  Thank you so much for your advice.  I should have listened to my gut instinct.  I had an appoinment set up at Seattle Cancer Care for a chest xray and a nurse consult on Friday and I cancelled them.  Sigh.  I didn't want to drive the 35 minutes.  And I was concerned that I was being an alarmist baby, after all, Trey said I should just do what I normally do with a cold, right?  But normally I go to bed for a week..................I should have realized that not wanting to drive 35 mintues meant I was really sick.  So I spent the weekend on the couch.  I did get up everyday and walk the dogs (we had a guest doggie for the weekend), going about 2 miles a day, so I got my exercise in.  (Had extra exercise when the guest doggie found a dead salmon along the Puyallup River and had to have 2 baths yesterday...........argh).  And yes, the dogs have a dog door, so I didn't HAVE to walk them, but the guest doggie is a one year old puppy that becomes way too much to handle if I don't.  The walk was good for me. 

So this morning I woke up with, what I am convinced are, glass shards embedded in my throat and the weezing and popping and gurgling sounds are back when I breathe.

So off I go to the PCP's attending, since he is on vacation for 2 weeks.   At least these guys are here in Tacoma, only 5 minutes away.

Husband comes home in 2 days.  I am trying to be a good army wife and not complain and ask him to come home............not that he could, of course, but it is hard not to wish it out loud.........

Ok, off to the shower so I don't stink up the waiting room.

Caroline



#11 jrsboo

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Posted 04 April 2011 - 03:18 PM

So, not a cold, and not the flu.  I have asthmatic bronchitis!  Aren't I the lucky one!!!  New doctor is absolutely terrified about treating me (the leukemia scares him) so he also put me on anti-biotics,  just in case, and gave me an inhaler. 

I should have known. 

I always get the weird sicknesses, never the normal stuff................as evidenced by CML!

I would insert a giggle here, but it would make me fall over coughing and gasping for air.

Caroline



#12 Tedsey

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Posted 04 April 2011 - 03:41 PM

Please take care.  It is awful not being able to breathe freely, let alone feeling crappy and being alone.  I hope your BMB is as painless as possible and the results excellent.  If only we didn't have to suffer any other sicknesses...in a perfect world.

All the best, and a speedy recovery,

Tedsey

P.S. One of my best friends is from Tacoma and I spent half my childhood outside of Seattle.  It is a beautiful area.  



#13 jrsboo

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Posted 04 April 2011 - 03:49 PM

Thanks Tedsey,

I hope you are doing better?  Prior to cml, I also had a month of soaking through pad after pad, I think I was up to 6 birth control pills a day trying to get it to stop.  Then I had the best surgery on the planet........a hysterectomy.  LOVED IT.  Very easy surgery and quick quick recovery, I was walking around by noon of the same day.  Have never ever missed having a uterus.  I had them leave my ovaries in, so no need for hormone replacment.  

Yes, this is one of the most beautiful places to live, mountains and water everywhere, green and lush.  Ok so it rains 9 months of the year.    but the other 3 are spectacular and make it all worth while.

All the best,

Caroline



#14 Susan61

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Posted 04 April 2011 - 06:49 PM

Hi Caroline:  Glad you went to the doctor.  I was basically trying to explain the same thing that I get.  I was told I have Asthma years ago.  Nothing everworked for me even the inhaler.  I finally just gave up on that, but when my allergies act up it feels like a cold or flu once it gets into my lungs, and they always tell me its Bronchitis.  I get the nagging cough and congestion, and the only thing that works is the antibiotic and cough medicine like I had mentioned.  Within a few days I usually feel great.  I also get the breathing problem, where I am gasping for air unless I am in air conditioning.

     Not comparing you with me, but I was a smoker years ago.  I blame that on  lot of my problems that I had developed.

     Bottom line is that you feel better just knowing what is making you feel so lousy.  Take Care

Susan 61



#15 jrsboo

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Posted 04 April 2011 - 11:06 PM

Man, I love this place.  Warm, friendly imaginary faces, giving supportive thoughts and wishes. 

Who could want anything more?

Thank you to everyone. 

Breathing is better with the inhaler, but I just took a shot and now my hands are a bit shaky.  I think that is normal, and it goes away in a few minutes.  I felt well enough this evening to get off the couch and clean the downstairs bathtub (truly needed it!).  I may even reward myself with a soak in my newly cleaned tub.

As Scarlett said, I will worry about the rest tomorrow.

Caroline



#16 Susan61

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Posted 05 April 2011 - 05:30 PM

Hi Caroline:  You said it all, and its so true.  You sound like your doing so much better since you got some kind of treatment for this Bronchial Asthma thing or whatever you got.  I know your alone a lot, and you can just send me a message anytime.  I am always available if you need to chat or vent.

Susan 61



#17 jrsboo

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Posted 05 April 2011 - 06:45 PM

Thanks Susan,

That is so comforting.  I felt better so I walked the dog this morning down at the "bird park", he had a blast.  I got tired.  Tried to do some work, but can't really sit up for very long.  I am so happy husband is coming home tomorrow I could just cry.  Ooops, there I go.  Being this sick is hard.

I think I am going to go lay down again now.

*clunk*

caroline



#18 TomL

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Posted 05 April 2011 - 07:06 PM

Just do not forget to be your own best advocate. Do not let onc or other dr poopoo your symptoms. YOU know how you feel, they do not. If you have ANYTHING persistent, find out what it is to YOUR satisfaction!



#19 jrsboo

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Posted 07 April 2011 - 05:37 PM

Ok, husband home (yay).  Breathing still sucks, I make all kinds of noise when I do.  Coughing up a lung every hour on the hour.  Basically still feel like crap.  On day 4 of a 5 day antibiotic routine, don't think it is helping. I am becoming more sure that it is viral.

Have another call in to the onc, I am supposed to have a BMB tomorrow, with sedation (ain't NO way that is happening without sedation--and I NEVER use the word "ain't"--EVER).  But it has been hours now and no phone call back from them. 

Small meltdown on couch earlier.  Husband being fantabulous, and I just lost it.  So tired of being sick and tired.  I know you guys understand.  But looking forward to the rest of my life with this much fatigue and side effects, and then being sick on top of it.  Overwhelmed. 

I know, intellectually, that it will get better.  But when one's sides and throat hurt from coughing, and there is no extra energy to devote to anything, well, it just sucks.

Thank you for attending my pity party.  Please pick up your gift bags on the way out.  They contain tissues, pill boxes, cough drops, inhalers, and remote controls for your new 56 inch flat screen tv, which you will be sitting in front of for hours. 

--*sputter sputter cough cough cough*

     Caroline






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