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CML AND THE BUG


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#1 Stephenagy

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Posted 23 January 2011 - 08:47 PM

Hard to believe that I am now 2 years into this.  Great response to Gleevec and no plans to change under the circumstances.  This year I have ended up in Urgent Care about 5 times for the beginnings of a cold or flu.  Just finishing up a bout that lasted near 2 weeks.  I travel for work extensively, so exposure is always a problem.  Just wondering if I am the only one fighting this battle, or if all of you are in the same situation.  And if you are....what are you doing to bolster your immune system.  I am desperate in this.  Thanks for any help.

Steve



#2 knoppl

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Posted 23 January 2011 - 08:59 PM

I have found that when I get sick it lasts longer. I take my mutlivitamin and vitamin D and wash my hands often.Hand sanitizer in the car and I use it after coming out of a public place. My trouble is the colds and flu that my kids bring home from school. That is where I think I generally get it all from.



#3 Guest_billronm_*

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Posted 23 January 2011 - 10:49 PM

My PCP told me to get a flu shot every year, and take 2000IU of vitamin D3 daily. I got pneumonia 3 weeks into treatment, My Doc said as soon as I was well to get a Pneumonia Shot. I have had my share of emergency room visits. Mainly because I run very high fevers when I get sick. 103degrees sometimes slightly higher. I never ran fevers before cml. Boy isn't it something all these little surprises it throws at us?

                                                                                      Take Care Billie

ps I couldn't find a doctor that had the pneumonia vaccine available. So I called the Health Board they had the vaccine in stock.No Charge either!



#4 CallMeLucky

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Posted 24 January 2011 - 11:33 AM

I recommend using a Netti Pot http://www.neilmed.com/usa/nasaflo.php

It's a little uncomfortable, but it flushes out your nasal passages and prevents germs from settling in.  I don't claim it is 100% but I have two little kids at home, every year I get sick, and despite this being the year I was diagnosed with CML, I have been holding up very well and not caught any of their colds.  Or let me say that I believe I have caught them, but they were not able to set in.  At first sign of cold symptoms I would use the netti pot and it seemed to pass in a day or so and never got bad.

Hope you find some things that work for you.


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%
 

 


#5 hannibellemo

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Posted 24 January 2011 - 03:29 PM

Steve,

I agree with Lucky but I'm lazy I use the Hydropulse Nasal Irrigator that another CMLer told me about. http://www.amazon.co..._sl_dr5e4zy11_b

I've had one cold since dx but I had a nasty bug this weekend - very achy joints, stomach pain, etc. My temperature got above 100.5 and I had to call in. It was back to normal by that evening so I didn't have to go to the ER. My husband has it today so that's a quick incubating virus.

As careful as we are with hand washing, glaring at people who cough and sneeze without covering their mouths/noses, etc. we're bound to catch something. I've been told that as long as our ANC doesn't go below .5 (500) we're not generally in real danger. We apparently have a redundant immune system.

Take care of the big stuff like flu shots and pneumonia shots if your doc thinks that is wise.

Regards,

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>


#6 Stephenagy

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Posted 24 January 2011 - 03:59 PM

Thanks Pat.  Was the good soldier this year and got both flu shots.  I finally surrendered today and went to urgent care.  I hope all the stuff kicks in fast.  I know that sharing is caring, but this bout was ridiculous.  Washing hands and using antibacterial stuff. Hopefully we can nip this in the bud.

Steve



#7 martha

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Posted 24 January 2011 - 10:16 PM

This is ironic because I have been struggling off and on with a cold, too.  I first caught it the last week in Dec, took over the counter meds, and after about 10 days, all was nearly back to normal.  I still had a few lingering sinus issues, but all symptoms of the cold were gone. But I travel a lot with a new job, and have had many middle of the night wake up calls and early departures in snowy weather the past few weeks, and a few domestic flights (which I dread this time of year because so many people are always ill with colds.) Then, last week, I woke up Thursday a.m. and there it was again---that darned cold was back.  So, I went straight to my PCP.  I had a slightly elevated fever (101) and he immediately placed me on antibotics and I've stayed home for 3 days, resting (I also took some benedryl. ) My fever was gone by Friday evening, and by today I felt much better, and tomorrow I'll head carefully back to work. But I will also contact my oncologist office to check in and share my January sniffles/cold story to see if they feel it might be a good idea if I move my appt up & come in sooner for some blood work. I am very proactive in my treatment, and I try to do so with a balance of common sense....treat the cold but call the oncologist and check in for peace of mind sake.  And I do get a little paranoid about bugs that linger, but I think that's part of being proactive.  BTW, I did not get a flu shot this year, which I normally do, so I regret not taking care of that!



#8 janner25

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Posted 25 January 2011 - 09:08 PM

Hi Steve -

I am finding myself catching everything that I never used to get.  I went on an antibiotic at the end of December for a sinus infection and I'm already sick again.  This time, its in my chest.  Trying to hold off going to the doctor to see if I can shake it...but between the 'new normal' tiredness and now this - I'm not sure I can wait.  I do see the hematologist on Friday for my 1st checkup since dx. in October 2010, so I figure if I really need something, maybe he'll write out the script.  Hoping this craziness stops!  All I know is the nurse at the office said I will be more prone to things because my body is fighting off the CML and the meds are wearing me down, so this may be new normal as well...JOY JOY JOY!!!

Good luck - spring has got to come at some time (then it will be allergies)...so let's just hope for a mild summer






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