Hi All, I've just started my 6th month of treatment taking Nilotinib, and all going well so far in general. I have been feeling increasingly poorly this week, and yesterday a cold developed which seems to have caused a problem with my left sinus - blocked and painful, so assuming possible infection. I have a weekend of planned lunches and socialising, but I'm concerned that my immunity is compromised and may make me further susceptible. Would you go or stay at home?
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Winter colds, compromised immunity and CML
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Hi Julie, That is a very interesting question. I would defer to the experts (on this site and ask your doctor?), but my feeling is that if you feel up to it, you should go! I was diagnosed in April (on Imatinib since April 7), and I have not a single cold, sore throat, stuffy nose in all that time. Fatigue, yes, but nothing else. This has been a surprise to me because even though I've always been healthy, my blood counts have been low for most of this time and I thought I would be susceptible to bugs going around. My coworkers, friends, and family members have all had the usual things but I seem to have a super immune system! Go figure! I hope you will feel better quickly so you can enjoy the holidays!
I guess you should base this kind of decision on your blood counts, especially your neutrophils count. In the first phase of my therapy my neutrophils were very low; doc was very explicit, he told me to avoid sick people, including my own 1 year old son, who got all kind of bugs from the creche. I was told to avoid crowded spaces, shopping malls and all.
But since you're not mentioning this, I am assuming your counts are in the good range, or close to it.
If so, I would behave as the next guy. Are you feeling poor? Stay home, maybe your body is telling you to take some rest.
But do not restrict your habit because of CML or TKI, for you have a lifetime with TKI ahead of you.
Consider this. Some people have a strong health, and never get a flu (I used to be like that!). Some other get flus, have allergies, etc. Both kind of people have a normal social life.
We are lucky, because TKI give us a chance to lead a normal life; we might be a bit immunosupressed, but we're not different from those people who get flus all the time.
Good luck!
Davide
Since diagnosis (18 years ago last week) I have been taking ascorbate (Vitamin C) in powder form on a daily basis- even during my SCT. Whenever I have symptoms of an infection or have flu like symptoms I up my daily dose. This depends on your individual needs but it certainly keeps me infection free as long as I take it every day.
Sandy
Reply to justine
hi Justine, I was diagnosed on June 1 and started treatment on spyrcel on July 20. Yes I know the fatigue feeling. I was really concerned about this as it was the way I felt before being diagnosed., I couldn't see myself going on like this In October my blood count was normal apart from my red which was in a downward spiral. At 88 the dr arranged a blood transfusion, 7 days later blood test for transfusion my red was down to 77. The dr stopped the spyrcel 100 for a week, I started to feel good in about two days, as soon as I had my blood test I started back on spyrcel, the tiredness never came back, infact I have no side effects. Taking me off did not cause any problems. My BCL three months ago was 1.9, few days ago it was 1.6, My red blood seem to be slipping again, will do blood test again this week, all others is fine, my wbc is 2.6, dr will check my iron and b12 as well.
I don't have any other health issues, so don't have to take other meds, however I do take a multivitamin, and vitamin D daily. Hope your fatigue goes away as well, when the dr told me taking me off and putting be back on will lower the side effects it seem unlikely to me as I was really fatigue, part tablet part low red blood count.
since October I don't even remember I have CML, I feel really normal.
Thanks, Sue. That is great to hear! I am so happy for you, and hopeful for improvement of my fatigue, which doctor says to expect. I think it is too soon for me to switch TKI but that might be a possibility down the road. Take care, stay well!
this is not a you should take these post , but what i read so far they seem to be very effective . i didnt search very well though .(planning at weekend) just read the comments.
next week in our meeting with my mother's nephrologist and 3-4 weeks later with her hematologist , i am gonna ask both them about beta - glucans . if they give ok to taking it , i am thinking about giving my mother it at least in winter for 4-5 months .
https://www.amazon.com/s/ref=nb_sb_ss_i_1_7/145-0924976-6792130?url=sear...
you can read reviews for different brands here .
most of the post are saying it boost immune system and they never had cold or flu after taking these . but i am not sure to mess with immune system . ( it says modulate in natural ways ) or they feel exhausted no more . also i guess they are some different types . so early to write anything actually.
weekend probably at sunday i will post about what i ve found .