14 replies to this topic

[stuharrisonsf]

Hi Everyone:

I was diagnosed 14 months ago and Sprycel was my first line of medication.  I have been happy with it and it's doing the job.  My PCR is "unquantitatable" and my blood counts are good, the only outliers being red cells, hemoglobin and hematocrit - so just a mild case of anemia that I can generally cope with.  I also get the dreaded skin rash, on my forehead and chest, but I can keep that down to a dull roar with corticosteroids.

I am male, 59, otherwise healthy, and I keep myself active by cycling up to 100 miles a week.

Until a few weeks ago....

After a short, relatively mild cold that I cought in London I went on to develop Community Acquired Pneumonia.  I have never had pneumonia.  (Avoid it if you can - it's a bear.)  All my white cell counts prior to the onset of the disease, abs neuts, etc, were mid-range normal. At diagnosis of pneumonia, my CBC showed my immune system responding appropriately.

My primary care physician looked up Sprycel on Uptodate.com and I was surprised to see "Risk of Infection" listed as the #2 side effect.  It included a recommendation that patients on Sprycel avoid crowded places and contact with people who have infections, colds or flu.  This was news to me - there is no such warning on Bristol Myers' package inserts or website.  "Infections" shows up way down their list of side effects under "Other."

This has gotten me thinking, and I looked around at some other websites.  The Cleveland Clinic warns Sprycel patients that they should seek immediate medical attention, day or night, if they have a fever of 100.5 degrees, or even a "very sore throat."  They too warn of the risk of exposure to infectious agents in large group settings.

The EMS medical website puts "infections" at the top of the list of side effects, even above pleural effusion and blood count surpression.

In an effort to avoid the onset of pleural effusion by preventing an upper respiratory infection, I have become somewhat maniacal in washing hands, avoiding touching my face, using gloves to pump gas, even wiping down restaurant tables and airline seats with Chlorox wipes, and this has helped prevent me from catching a cold in over 18 months.  But I took these precautions because my intuition told me to, not because of a Sprycel manufacturer's or my oncologist's warning  And having healthy white cell numbers lead me to believe that my immune system was normal.

Yet these other respected websites suggest that Risk of Infection on Sprycel is independent of Blood Counts.

So all this leaves me wondering whether there is an increased risk of infection for someone like me taking Sprycel with normal white cell counts.  And what are the reasonable precautions to take.  Can anyone shed some light on the subject?

Thanks,

Stu

[Trey]

Sprycel has a small effect on the T-cells and NK-cells that the other TKI drugs do not seem to have.  This can lower resistance to viruses to some apparently slight degree (pneumonia can be either viral or bacterial).  London weather is a petri dish for incubation of pneumonia, so that is more likely the cause than Sprycel. 

http://bloodjournal....111/8/4415.full

http://www.ncbi.nlm....pubmed/18413841

[TeddyB]

Hello Stu.

Gleevec and Tasigna also lists this as its second side effect on the page you mentioned. I guess its just a general warning.

I have 2 small kids, both in kindergarten, bringing home all sorts of germs, and ive only been sick once after dx, and that was after 2 months of treatment, while my body was adjusting to gleevec, and my immune system was weak. Been fine after that. Actually, my gf is in bed now with a sore throat and a fever, and both my kids are coughing and sneezing all through the night, im actually the only one who is not sick in the house at the moment. (Knock on wood)

Im doing all the work around the house, shoveling snow, and making meals, feels good to have Leukemia and beeing able to contribute like that. The fatigue gets me mainly in the evenings, and at work when stressed, i really cant handle stress anymore cause my brain just shuts down. I usually lay on the coach all evening after the kids are put to bed.

Sorry i couldnt be more of a help in regards to your original question, but i hope it helps somewhat to see that the other tki`s also has this listed as the second on the list. Good luck.

[scuba]

From the article Trey cited, "Thus, if the in vivo effects of dasatinib against NK cells are similar to those against T-cells, once-daily dosing with dasatinib may result in only minor suppression of NK cell function and greater suppression might occur when dasatinib is taken at higher doses or with greater frequency. Further in vivo studies expanding on our findings will assist in discerning any effects of dasatinib on NK cell function in patients."

... and another, more recent, article that reports the opposite:

http://www.ncbi.nlm....pubmed/23108877

.. and then another, equally recent, article that attempts to explain the contradiction:

http://www.ncbi.nlm....pubmed/22419518

[Trey]

Overall I think your Oncs are overstating the issue.  In general we have a fully functional immune system.  The Sprycel issue is a small matter.

[acb]

I will say that I have been more "sick" since being on Sprycel, and it seems to have gotten progressively worse. I think, for me, it has more to do with excess fluid (in the ears, head, throat, chest, etc.) than weakened immune system. I have had bronchitis 2 times and pneumonia once in the past year. The year before I had strep 3 times. Before Sprycel (and/or CML), I was rarely sick.

[Tedsey]

Man, I hate when oncs ring the alarm bells (perhaps this is all due to unfamiliarity with people on the drug and CML?).  I have been on Sprycel for 2.5 years.  I am around crowds of snotty kids and toddlers daily.  I have weathered the throngs of grocery shoppers, American malls, holiday revelers, and public pools with my toddlers.  When I was first dx and on Gleevec, I was dx with pneumonia about a couple weeks after taking the drug.  However, my immune system was probably burning out due to the extreme amount cancerous WBC in my body.  Moreover, I was in a constant state of anxiety due to being diagnosed with a deadly and incurable cancer (if that doesn't lower one's immunity big time...and it was cold and flu season).  Nevertheless, with antibiotics, I healed quickly and well.  I had one flu right before I was switched to Sprycel.  And my whole family got it worse than I.  Ironically, I took care of everyone.  Since then, I think I had a minor cold once after Sprycel.  And, as I write, both my toddlers are home with a stomach bug.  My husband thinks he has a touch of it.  We shall see if I survive this one...   Ironically, as the person with the chronic "big" sick in the house, I very rarely, if ever, get sick.  Guess I shouldn't press my luck by saying that.  Oh well...

I think you were just unfortunate to come across a nasty bug.  I seem to doubt that it had anything to do with the TKI.  I have had pneumonia at least 4 times in my life.  I think I must be susceptible, but I always heal from it quickly and well.  I am sorry you had to go through this.  Having trouble breathing is horrific.  It was for me.  As for staying away from crowded places, I say rubbish (unless you are like me and want to stay away).  Are we supposed to shut ourselves away from everything?  The oncs don't have to live our lives (and I am sure they thank their lucky stars every day).  I am not sick enough to stay housebound.  And it appears, from your post, neither are you.  I think, like anyone, being sensible at this time of year, (cold and flu season), is your best bet.  That is, try your hardest to stay away from actively sick people, don't touch your face, use hand sanitizer or wash your hands after touching communal objects (all the things you mentioned). 

I have written this before, (sorry to repeat), but an acquaintance came upon a horrible and rare virus that almost completely destroyed his heart and other organs and put him in the hospital for months.  He was young and healthy.  A bad sickness could happen to anyone.  We, if anyone, understand this.  As a fellow Sprycel user, I see it as I cannot control what I cannot see unless I live in a bubble.  Not practical, and as far as I know, not offered.  Best of luck to you and here is hoping this is the last time you contact something bad, and if you do, here is to your effective and working immune system.  BTW, if someone hasn't mentioned this before, drug companies will try to cover all their legal bases and list absolutely any side-effect that was reported on their drug.  When I can see a study done that supports increased infections on Sprycel, with a good and representative sample size and repeated, then,  I may have a different opinion.  But this probably won't ever be done unless it comes up as a huge issue.

Live your life and be well,

Tedsey

[stuharrisonsf]

Thanks to all who submitted replies and further information.  I had a follow-up visit with my primary care physician today, and I am clear of the pneumonia.  I asked him point blank, "do you interpret the literature on dasatinib to mean that I have an increased risk of infection, regardless of my blood counts?"  Without hesitating he said yes.  He gave me the pneumonia vaccine (six years early.)  And a Z-pack for when I am on the road.

If anything, I think my oncs have been somewhat cavalier about all this - risk of infection is only referenced on a few websites, and my oncs have never advised me to take precautions. One nurse practicioner recently made reference to my "compromised immune system" as the probable reason for  some skin staph infections, but this was only in passing.

Had I been fully aware of my increased risk, I would NEVER have gone to London in November!   As Trey correctly points out, the Tube is a petri dish...

[CallMeLucky]

I just want to point out that you are taking the advise of a nurse practitioner and general practitioner over the consultation of oncologist with regard to oncology matters.  I'm not saying the oncologist is infallible, nor am I saying the GP and NP are wrong, but the prevailing feeling among the experts who deal with this on a day in and day out basis is that overall you should not be much more at risk.  Maybe you are, maybe we all are, I am sure it fluctuates from patient to patient.  My only advise here is to take what the GP says with a grain of salt - how many patients does your GP treat that are on Sprycel vs. how many does your onc treat?

[stuharrisonsf]

That's good advice, Lucky.  In fact, the NP is at my local oncology practice, so she knows what she's talking about.  My principal oncologist is a CML guru at a teaching institution, but his specialty is research.  I'll be asking him about his experience with his other Sprycel patients and infection at my next appointment in late December. 

[Trey]

Sometimes the research data does not match real life.  In this case, I believe the real life experiences here do not line up with the theory. 

[sharcare]

I work in a school system and I have 4 year olds coughing and sneezing on me daily.  I asked the onc. about this and he said there was no need to worry.  He said to just wash hands often and use Purrell.

[ritan/]

i would wonder about any onc who actually suggested using purell or any hand sanitizer since it has been shown to be largely ineffective. (rinsing your hands with water removes more than 90% of germs, while hand sanitizer removes less than 50%). http://abcnews.go.co...59#.UL48DoO7Lg8

[Pin]

Good point - I usually use hand sanitizer when I can't get somewhere to wash my hands immediately so I guess getting rid of some of the bugs is better than none!