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Do any of you have poor immune systems? If so what do you do?


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#1 Idahogal

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Posted 25 February 2012 - 09:05 PM

Do any of you have a terrible immune system, lots of cols etc? If so what do you do?

I have just recently found this site and am so relieved to hear that others are having the same issues as I. It is very comforting. You all seem to be so much more educated about CML than I am. I am learning a lot. I was diagnosed in Jan of 2009 with CML. Since that time I have been hospitalized/treated for

H Pylori, C Diff, de hydration and had gallbladder surgery. I wasn't able to eat for 5 months and after hospitalization was put on TPN for nutrition, for several months. I have always loved food too much and couldn't believe that I wasn't able to eat. At this time I was on Gleevec. I finally went to the Huntsman Cancer Center in Salt Lake City Utah and they changed me to Sprycel. I am doing somewhat better and have a BMB scheduled this coming Thursday. If seemshowever if I leave the house I get sick. Since the end of December I have had 3 colds and bronchitis once. It seems as soon as I get well for a few days I am sick again. I wash constantly, use Purell and try to have little contact with others. Any ideas? Thanks!



#2 Idahogal

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Posted 25 February 2012 - 09:14 PM

I forget to mention that at the time I was unable to eat, I also had sores inside my cheeks, under my tongue and on the tip of my tongue. Has anyone else had these? My onc didn't think they were related to the CML but my dentist did a biopsy and said if was from the leukemia.



#3 GerryL

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Posted 25 February 2012 - 09:23 PM

Hi Idahogal,

I'm on Gleevec, but do know that Sprycel caused immunosuppression for some.



#4 Marnie

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Posted 26 February 2012 - 11:14 AM

Hi, Idahogal.  .

I was diagnosed in 2009 also, was on Gleevec and am now on Sprycel, so we have some similarities, though I have not had as many illnesses as you. . .sheesh!  I'm a teacher, so I'm exposed to germs all of the time.  Obviously the hand sanitizer and not touching one's face is the most important.  I also use Airborne when I feel something coming on.  I don't know if it really helps, but at least it makes me feel like I'm doing something to avoid the colds.  Mostly, if I start to get sick, I stay home and baby myself. . a lot more than I did before my diagnosis.  I wish I had some awesome advice for you, but I don't.  Hang in there and take care of yourself. 

What part of Idaho are you from?  We do a lot of kayaking in Idaho. . .mainly the Middle Fork of the Salmon River.  We were on the river during the forest fires of 2000.  They shut down the river and evacuated all of the people who were behind us by helicopter.  So we had the river in the raging forest fire all to ourselves.  It was quite the trip!

Marnie



#5 hannibellemo

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Posted 26 February 2012 - 11:29 AM

Hi, Idahogal!

I hope Teds gets on here and talks to you about her mouth problems! She will definitely be able to relate! She is also on Sprycel and has had a terrible problem. She has been able to find some relief so it might be a good idea to message her. (You can also search her posts by going to her profile.)

Do you know how your WBC counts are, especially your absolute neutrophils? They seem to be the first line defense against mouth sores and if they are low you may be more prone. For some, the mouth sores are a side affect of Sprycel, I've also heard that Sprycel and repeated herpes (cold sores) outbreaks go hand in hand. I've been on Sprycel for not quite 2 1/2 years and I have pretty intense outbreaks on the gum line about 2-3 times per year. They don't last long but their coming and going are pretty painful.

I'm so sorry you are having these frequent infections and I hope that as time goes on and your body adjusts and responds to Sprycel you will have them less and less often.

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 lnmunn

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Posted 26 February 2012 - 11:56 AM

yes my immune system is horrible there is really nothing i can do my doctor has been keeping me on antibiotics non stop.



#7 lthouse612

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Posted 26 February 2012 - 12:30 PM

Hello Idahogal... same here... Immune system is pretty weak so I do my best to keep from getting sick to begin with.  This isn't an easy task when I have 2 boys in school (I'm sure others can relate too).  My youngest stayed home with me all last week and sure enough... now I've got an upper respiratory infection.  When I feel I'm coming down with something or when someone is sick that will be close to me-- the kids-- I usually take Echinacea.  It's an herbal vitamin that seems to help me stay clear of it for the most part as it supports your own immune system.  This virus was pretty bad though.  I can't remember the last time one of the boys had to stay home for so long.  He's getting better...and I'm now getting worse.  Going to start antibiotics today so hopefully it'll help!  Good Luck...oh and I also keep a bottle of anitbaterial cleaner in my truck and use it every time I get back in from where ever I've been!  Take care!

Mark



#8 jrsboo

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Posted 26 February 2012 - 10:17 PM

Yes, I get the tongue lesions too.  The oncology dentist explained that the lining of your mouth completely regenerates every two weeks, and the Sprycel has a side effect of causing skin irritations, so there are spots in your mouth that are just not regenerating correctly. 

As for suppressed immunity: I don't go out much anymore.  I had to stop working, my reactions to the meds are pretty extreme.  But when I have to, I make sure to wash my hands constantly, and you should see the dirty looks I give anyone who sneezes within 100 ft of me! 

Onc recommended a flu shot, so I got one this year, for the first time ever.  I have not gotten the flu (knock on wood).

Keep clean and away from the sickies!

Caroline



#9 Idahogal

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Posted 27 February 2012 - 11:43 PM

I am so grateful for your responses and help. Thank you so much for the suggestions I will try them.



#10 Tedsey

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Posted 01 March 2012 - 12:21 AM

Greeings,

It's "bleeding gums" Tedsey here, (I should say tongue, cheeks and lips too---anyone watch the Simpsons?).  Anyway, I am on 100mg Sprycel.  Although I suffered from bad mouth sores for as long as I can remember, I never got them so bad, so long (months; not kidding), or so frequently until I started taking Sprycel.  I have a mouth full of them as I speak, (which I cannot very well).  There is a huge cluster under my tongue near the base, on top of my tongue, and I have one on my lip.  If you still get them, I could tell you what I do to try to head them off at the pass or reduce their staying power.  I hope your painful mouth experience is over for good.  But if not, let me know.

Nevertheless, my neutrophils and wbc are more or less normal, and I am not very anemic.  Those are two things that could bring them on.  I am also suspicious it may be the Sprycel aggravating a previous condition.  I have read other posts saying that some people's allergies have resurfaced or worsened while on Sprycel.  Also, I am one of those people who never get sick, (but I shouldn't jinx myself).  But that is common illnesses like colds and flu.  It appears I am susceptible to big sicks only, like leukemia.  So, that likely means my immune system is overall sub par. 

Take care.

Tedsey



#11 sarah1403989277

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Posted 07 March 2012 - 12:01 AM

hey from one idahogal to another. im in sandpoint where u be from



#12 Taylor

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Posted 08 March 2012 - 04:07 PM

This is an issue for me as well.  I just missed three days of work with the flu.  It seems like I've missed a lot of work just for catching some little thing.  I noticed this and my boss mentioned it too--thankfully not in a negative way.  I work in a deadline-driven job so it's really a problem for me to drop out randomly like this.

I have an appointment with my onc next week, and I'll be discussing this with him.  I reached PCRU last Sept and my counts have always been good.  Not sure about my ANC though, but my overall counts have been great and he's never mentioned anything bad with my ANC.  So we'll see.  I get plenty of rest but maybe I'll need more exercise or something just to strengthen my body overall.






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