28 replies to this topic

[Krock41976]

Newly diagnosed with CML chronic phase and will start on chemo in a few days (Gleevec). I was given all the drug paperwork earlier this week and I'm a little freaked out by all the chemo precautions, like flushing toilet twice after use, making sure no one else uses any eating utensils I've used, etc. Do you all really follow all these precautions? I think I'm more freaked out by all the precautions and possible side effects of the drug than the fact that I actually have CML.

[Frogiegirl]

I've never even heard of that! Neither my doctor nor my nurse have ever said anything about that.  Isnt that just for the patients on introveneous chemo and radiation?  Im going to google now  

[Marnie]

The TKIs are not chemo drugs.  I doubt if anyone follows the extreme precautions that are listed.  I certainly don't.

 

Welcome to our club, though sorry you had to join.  You will find that this is a great place to get information, and find support.  Lots of wonderful people on the boards.

 

Marnie

[Trey]

Whoever gave you those instructions needs to flush twice because they are full of crap.  None of those things are required or even make sense. 

 

TKI drugs are targeted drug therapy, not chemo.  The only small issue with TKI drugs is that pregnant women are told not to handle the drugs if they are broken. 

Edited by Trey, 10 July 2015 - 08:26 AM.

[JPD]

The only reason you might be flushing twice is because of the distress that Gleevac might cause to your lower GI.

 

        

[rcase13]

JPD you beat me to it!

[dede5]

I take Sprycel, and have been very careful about laying pills around (I suppose due to residue), because that's what the instructions say. I'm a stickler for instructions (lol). Never heard of any of the rest of that stuff, though.

[CallMeLucky]

This is where the law and science diverge.

 

They are applying general "Chemo" guidelines to TKI drugs, which is not accurate, but rather than try to peel them back and potentially expose themselves to liability they err on the side of extreme caution.

 

Use basic common sense, mostly I am careful with the pills because of how expensive they are and I am way more worried about them losing their effectiveness if I left them stored improperly.  

 

People shouldn't handle your meds, you should wash your hands before and after you take your pills because that is just good hygiene.

 

[Dona_B]

I was given similiar precautions with Sprycel 100 mg and one of those orange bio hazard zip bags with gloves! Gave me a new appreciation for those taking intravenous chemo. It's funny in retrospect but for awhile it was separate toilets and toothpaste. Early on I tried that double flush and was in a small restroom at a public recreation area and the lady in the next stall did the same and I wondered if she had a similiar story. We made small talk while we washed our hands but didn't get to the deep stuff. Yep, cancer, it's life changing. LOL. But it didn't take long to get back to normal.

I would add one thing to "Lucky's" precautions. I try to brush my teeth as soon as possible after taking the pill.

 

edited

[Busa]

 

 

"Use basic common sense, "

 

Why should I start now...

[soundoff]

Hogwash

[kavis]

When I was in the hospital they printed out a novel for the drugs they prescribed, and in that stack I read the same things about Tasigna.  I obviously was concerned as well, it said I shouldn't even do my laundry mixed with other people's! 

 

Long story short:  don't worry about it.  Every drug has to have the most extreme warnings possible, because...lawyers!  Otherwise, use common sense (clean up after the pills, wash your hands) and worry about getting better.

[OneDay@aTime]

My mom was diagnosed with CML in 2009 and has since been on Gleevec daily. According to her Cancer doctor, she has reached a full molecular response which is great.

 

But, in the past 3-4 months, she has started having issues with digesting her food and is started to have problems with vomiting undigested food. Thus, resulting in her GI doctor diagnosing her with gastroparesis.  He says there is nothing that can be done about it. Is there anyone else taking Gleevec or other cancer drugs that are having similar issues? If so, have you found a way to resolve them? I would appreciate any feedback on this topic. 

[gerry]

Hi OneDay@aTime

 

If you start a new thread for you question it will be easier for people to respond to your question.

 

If you go back a step to the CML menu you'll find a new topic button to select. 

[Tedsey]

OMG!  Think of all the toxins we are exposed to on a daily basis!  I'd say TKIs are the least of it.  I have always taken them like I do my vitamins.  In the beginning, I was worried about my saliva and kissing my babies!  Trey assured me it wouldn't be an issue.  My kids are growing well and don't seem to be poisoned by the stuff.  Occasionally, I receive the red hazard bag at which I roll my eyes.  As people look at cancer as one big disease, many do the same for the therapy.  Even the docs and pharms sometimes follow the typical protocol or spew out instructions without really thinking about differentiation.

 

I would say that lawn chemicals, household cleaners, solvants, paints, detergents, raditaion, and pollution pose a greater risk of exposure.

 

I agree with Lucky, the most I worry about now is keeping them effective (due to temp.) and not destroying the pills (like accidentally dropping it in the toilet or something...due to the cost of the drug!).  BTW, I don't wash my hands before and after, but I wash my hands so much throughout the day, it is probably a non-issue.

 

This is very scary in the beginning.  However, it will become just another pill you take whether it be like vitamins or other medications.

 

Keep calm and carry on!  Heal fast!

 

Tedsey

[Marnie]

Well-said, Tedsey!

[Krock41976]

Thanks for the feedback, everyone! I thought it sounded a bit ridiculous. Glad to know it wasn't just me!

[tiredblood]

Whoever gave you those instructions needs to flush twice because they are full of crap.  None of those things are required or even make sense. 

 

TKI drugs are targeted drug therapy, not chemo.  The only small issue with TKI drugs is that pregnant women are told not to handle the drugs if they are broken. 

Since when is a TKI not a chemotherapeutic agent?

[hannibellemo]

Tiredblood,

 

Our TKIs don't work the way traditional "chemotherapy" drugs do. Think of them as a rifle that targets specific cells vs. traditional chemotherapy that has a shotgun effect on ALL cells. Be thankful we aren't using "chemo"; no one could take it as long as the majority of us will have to take our TKIs.

[Trey]

Since when is a TKI not a chemotherapeutic agent?

 

Never was.  Unless you also describe aspirin as chemotherapy because it is a chemical used in therapy.  But that is not the generally accepted definition of chemotherapy.  Dr Druker calls TKI drugs "targeted therapy" not chemotherapy, which is pretty definitive.