15 replies to this topic

[Daisy1985]

Hey everybody!

Fortunately Tom seems to respond good to his Gleevec, last bloodtest (almost a month ago) showing only 15k WBC, his platelets also dropping and and his RBC slowly rising. We are so glad that his side effects are almost gone, and he could do almost anything a young man would do ( he even started to sport again, no football yet but squash).

However it s like he always catches a flue, when he s done with one be starts with another one. Sinusitis, cough, throath pain, he had it all the last month, he catches everything very fast and it takes long to cure.

So we were wondering, is the immune system not working properly? Is is bcs of the CML?

Is it getting better over time?

If someone is or was also dealing with such issues, please let me know!

Best wishes and lots of health for everybody

I m so glad you guys exist!

Daisy

[Judy2]

Hi Daisy,

I am glad Tom is responding well to Gleevec, that is great news. I am dealing with an immunity issue myself. I developed shingles 2 weeks ago. I think our TKI's can lower our immune system. However, I am also on another medicine for a different condtion that also lowers my immunity. I think, for me, this makes it a bit more complicated. At any rate, you should let Tom's onc. know.  Please keep us updated.

Judy

[Daisy1985]

Hi Judy,

Sorry to hear about your situation, it may be indeed a side effect of Gleevec, but then there are chaces it will pass after a while, I guess.

Anyway, next tuesday it s time for the monthly appointment with the doctor, new bloodtests and we shall see further.

We re a bit nervous already,I must say.

[Trey]

If his WBC is low, that could be a contributing factor.  But in general, the TKI drugs do not weaken our immunity.  In chronic phase, the CML also does not cause lower immunity to any significant degree.  Your husband may be physically weakened by earlier viruses, and then more susceptible to other ones.  Or maybe just a series of bad luck.

[CallMeLucky]

It is possible his immune system is weaker due to stress.  Let's face it he is going through a very stressful situation.  I have found that when I do get sick it seems to take a little more out of me and a bit longer to recover.  At about 20 months post dx I can say that I think I actually get sick less frequently, but that is probably because I am much more aware and careful about it.  My wife has a cold right and in the past I would not have thought twice about kissing her, but now I run away anytime she is near .  I tell her I can't take a chance on catching her cold because it will take me twice as long to get rid of it.

I would give it time, the first year is really tough.

[GerryL]

Hi Daisy,

Get Tom to start taking some vitamin C - it won't interact with his Gleevec and may also help if he is a bit low in iron.

[PhilB]

I was thinking stress too.  I would also add that although I don't think I catch colds any more often than before, the fatigue from the Glivec means I find it harder to keep going through a cold, so I notice them more.  Because of this I too am much more wary about catching them.  This makes my 90 minute commute on a crowded train great fun at this time of year. Each cough, sneeze and most especially sniff from my fellow sardines moves me one step closer to homicidal frenzy.

[Happycat]

Daisy,

Here's an alternative. It could be due to allergies. I went through years of getting sick all the time, pre-cml days, and it was all due to my allergies. In fact, I called my allergies my portal to disease. Not sure if he's ever been tested, but you can develop new allergies any time.

Here's what helped me.

1). Nasal corticosteroid sprays - these were magic bullets for me, gave me great control as long as I took an antihistamine too.  However, after awhile it thinned out the blood vessels in my nose, so I had massive nosebleeds , had to stop.

2). Zyrtec (antihistamine) and singulair (leukotriene inhibitor). The Zyrtec takes care of the histamine component of allergies, whereas the singulair takes care of long term inflammation caused by leukotrienes. I need to take both. Used to get breakthrough symptoms on just Zyrtec, but rarely happens now that I take singulair too.

3). Allergy shots - been doing these a good 8 yrs now, helps a lot.

4). Sinus and tonsillectomy surgery - this was the #1 treatment that caused the most improvement. My sinuses had a lot of scar tissue (thickening of tissue) from repeated infections, and they were just chronically inflamed, so I always had a pool of mucous in there to breed bacteria. Every minor cold led to a sinus infection in about a week. I was on antibiotics at least every other month. Since I had the surgery, I get maybe 1-2 colds per year now, down from 6-12 per year pre surgery. Whereas I used to take at least 10 sick days a year, I rarely have them now.

Thus, if your dh is really having a lot of sinus issues, I highly recommend a vist to an ENT or allergist.  Getting allergies under control and the inflammation and scar tissue that accompany them makes a world of difference.

Traci

Message was edited by: Happycat P.s.  I should add that all the symptoms you describe are what I had with my allergies. Nearly constant sore throat, fatigued, caught colds extremely easily, etc.

[AmyH]

I started taking Vitamin D3 (5000iu's) and when I'm feeling sick I take Vitamin C as well.  It has really helped!  I just went to the doctor for a cold/sore throat and they gave me antibiotics.  I wanted to try to beat it on my own and I did just that w/the vitamins.  I think the extra Vitamin D really helps.

[NotJack?]

Hey Daisy,

I certainly don't have the knowledge of the bulk of your respondents, but for what it is worth, my onc only closely watched the Absolute Neutrophils as a indicator of a compromised immune response.  My levels dropped quickly under Tasigna, and it took a while for the good cells to build themselves back up.  I would say that if Tom's Absolute Neutrophils are only indicating mild neutropenia, that there is a different trigger, like stress, or the other suggestions.  Two thumbs up on at least multivites!  Jack

[CallMeLucky]

Yes Phil the train can make you nuts, while I don't commute everyday, I went into the city last week and I was sitting next to someone who kept coughing and sniffling away.  I was so stressed about it, I kept sinking deeper and deeper into my coat, pulling my collar up over my mouth and face.

[Daisy1985]

Thanx everyone for your reaction!

It is actually funny, that everytime that Tom shows some flue symptoms we are like - Oh, no CML strikes again, maybe the sickness is developping and the treatment isn t working anymore... And then we say like - Phew, it s just a flue At the point when he was diagnosed he had such flue symptomes, low fever, cough, night sweats, weakness and that all makes it a bit confusing. But I guess in time we ll get more relaxed about it.

Of course it s been a stressy time, you never expect that you ll receive cancer at this age and maybe all that stress and worries afftected also his immune system. But like Trey said, and I read it also in his blog, it can be also a issue of to few WBC, I guess it takes time for the body to produce new good cells.

  But I think as long as his bloodtests are ok everythink should be fine, so fingers crossed for Tuesday !

Greetings from Belgium!

[Susan61]

Hi:  Glad Tom is responding well to his Gleevec.  I used to get sick all the time with the sinusitis, bronchitis, and even Pneumonia.  I have been getting my FLU Shot every year , and have kept up with Pneumonia Vaccine when I am due.

I have seen a huge difference in not picking up every bug that comes along.  I got sick a few times, when my husband brought the germs home with him from work..  He works with the public everyday, and he is around so many people with different sicknesses all the time. Maybe that would help, unless he is already getting his vaccines.

Susan

[NotJack?]

Hi Daisy,

Just one other thing for Tom to check out.  I have a hot tub, and before I was dx, I went to the dealer to get chemicals and a water test.  I ran into a surgeon there for the same reason, and we talked.  He said that he uses his hot tub for pleasure, and therapy.  I assumed that the therapy was to relax the muscles, but he said no.  The reason that he goes into a 103 degree hot tub is to raise his temperature enough to kill any offending viruses that he may have picked up in the incubator that he works in-- the hospital.  He said that since he has been doing the hot tub daily, he has not been sick -- and it has been years.  He said that it is like what the body does with a fever, without the illness getting in the way.  I immediately asked for a prescription for a bigger hot tub for me, and got nowhere.  He did say that they could probably get away with that at Mayo or Sloane Ketterling, but not at the county hospital.  Just food for thought.  Jack

[Daisy1985]

Hi Jack,

the hot tube trick certainly works for me, when I feel a flue coming,  especially if I add some essential oils, like eucalipthus. Tom tried it too, some months ago, when he was still struggling with the CML symptoms and he felt very bad afterwards, sick and dizzy. I guess the warmth was not good for him at that certain point due to his condition. He was even feeling like vomiting everytime he took a warm shower. Thanx God, that s changed now, but I don t see him right away taking a bath again,

But indeed, it may be a good trick to keep a bug away, for those who can stand hot water of course

[TeddyB]

Been having some infection issues myself lately, but i think its a combination of many things:

• 2 small kids in kindergarten, bringing home every disease known to mankind.
• Gleevec having some fun with the immune system.
• The stress of knowing you have CML.
• Lack of sleep.

Ive been trying to exercise, but every time i try some light jogging or cycling, i seem to get some kind of inflammation or infection in the mouth or throat, and i have to take it easy for a couple of days before it passes. Once it didnt pass, and i had to get antibiotics. Right now, i only walk 30minutes each day, cause thats all i feel comfortable with at this point, and its very frustrating, when i really want to work out more.

Ive started taking 200mg of Vitamin C each day, and i also take a vitamin D cause my levels were very low, and i take fish oil as well. (Only recently started fish oil)

If anyone has any other good tips for boosting the immune system, let me know