17 replies to this topic

[ritan/]

i've been told that we must be incredibly careful to avoid secondary exposure to gleevec (with my family). but we can't seem to find any information about what that secondary exposure would cause (since i don't see how it's possible to completely avoid the possibility of exposure. anybody know? i've looked for articles adn found absolutely nothing.

[Susan61]

The only thing I can tell you is nobody should be handling your Gleevec due to it contents, but it does not mean exposure to you.  There is nothing to worry about.  The person should just handle their pill each day to take their medication.  Who said secondary exposure?  I do not understand it the way you are expressing it.  Do you mean if  you take Gleevec that you should not be in contact with family members?  Your message is a bit confusing.

[ritan/]

secondary exposure is supposed to be able to happen through contact with any of my body fluids. (ie: tears, saliva, vaginal secretions, (sperm if i was a man), etc.)

[GerryL]

I've never seen anything about secondary exposure and remember we've got some guys who have produced lovely babies whilst on Gleevec. If anything was going to happen, you would think it would happen then.

[Pin]

This sounds like odd advice and not something I have heard before. I was told to be a bit more careful with putting the toilet seat down to avoid contaminating other people when I was on hydroxyrea (I guess cos it was 'chemo' chemo) but not on Gleevec. I thought maybe because it is more targeted?

[Trey]

It is a myth.  The only exception is that the drug makers say that pregnant women (non-patients) should not handle broken pills.  But even that is a gross over-reaction.

[ritan/]

thanks.... i asked my onc. who sort of blew it off. but didn't say 'that isn't true".

[ritan/]

the stupid part is they didn't tell me anything while i was on the hydrea, so my hub handed me pills, etc. before i figured out he shouldn't be. but then they made the gleevec sound like was going to be a toxic dump for the rest of my life

[PhilB]

The only people who would ever need to worry about secondary exposure are:

1. unborn children of CML mothers
2. breastfeeding infants likewise
3. vampires?? (especially those with low blood counts)

Anyone who tells you different has an over-inflated belief in the quantity of their bodily fluids.?

[Susan61]

Do not listen to all of that.  I am on Gleevec for 11 years, and been around a lot of people including my husband of many years. Nobody ever told me the things you have been told.  Relax and enjoy your life.

[ritan/]

jeeze.  i hate that i've been so mislead. i couldn't find anything when i went researching, so i was still going with what they were telling me. ARG!

[Happycat]

I'm sure you were told that by a well-meaning person, who had the best interest of your family at heart, just not the best information.  Chemotherapy is pretty toxic stuff, and healthcare workers have to be careful handling it to avoid getting hurt themselves.  When our cat was treated with radioactive iodine, we had to treat his used kitty litter as radioactive waste.  I'm sure whoever told you that thought something similar, that the hazards were still present in the waste products.

  Gleevec is really a drug.  It has a lot of basic nitrogens in it, and it is fairly caustic, as the burning feeling in my stomach sometimes reminds me.  If I were to handle Gleevec in the lab, I'd wear gloves.  But the commercial drug is coated, so you can handle it at home without personal protective equipment.

The main metabolite is excreted in the bowels, and is also fairly caustic, as I'm sure you have probably noticed by now.  Unless someone is handling your excrement,and then not washing his hands (eewwww!) there should be no hazard to your family. 

Traci

[AliceJane]

Vampires? Wonder how CML and Sprycel blood would taste to them?

A sexy vampire is very important in one of my dreams, so does this mean my blood would taste bitter and he would not be interested? Or that it would still taste good, maybe very good, but too much would make him sick so I would be safe?

[ritan/]

this was the "education" that i received at the cancer clinic about gleevec.

[CallMeLucky]

More misinformation from people who supposedly know better.  You want to know the real kicker?  You paid a lot of money for that advice!

That's the one that kills me when I go to these doctors and they tell me stuff that is so blatantly incorrect and then I see the bill and I really get annoyed.

We need a CML genius bar!  Trey can be the manager

[PhilB]

Thanks Lucky.  I've been wondering what he looks like for years.  Seems I was nearly right about the Star Trek uniform!

[ritan/]

i just wanted to follow up on this for future people looking for the same answer. prior to coming here i asked the CML expert board. here is their response.

"There is no evidence that Gleevec® poses a health risk to friends or family from sharing eating utensils, other than those risks incurred by the public at large, primarily from viruses such as those which cause the common cold.

There is no evidence that Gleevec® poses a health risk to a partner during sexual activity. Gleevec® is primarily excreted through the feces and is not considered toxic according to US Material Safety Data Sheets. There are however, significant concerns about any pregnancy while either partner is taking Gleevec®. Both women and men taking Gleevec® who are of childbearing age should always use a highly effective form of birth control and consult with their physician prior to contemplating a family. It is generally thought that men should be clear of treatment for a minimum of eight (8) weeks prior to engaging in sexual activity with the intent to conceive and women should see their obstetrician before pursuing a pregnancy.

For those where pregnancy is not an issue, for example in individuals who have had reproductive surgeries to prevent pregnancy, Gleevec® poses no risk to a partner engaged in unprotected sexual activity. The drug is not passed through physical contact or bodily fluids."

[Tedsey]

I have two toddlers.   I'll let you know if my kids eventually grow horns or a third eye.  It's been 2 years; so far so good.  I am convinced that this is something we don't have to worry about.  As with anything, only time will tell.  But there have been people on a TKI for over a decade and their loved ones seem to be fine.

Take care,

Teds