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#1 scuba

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Posted 11 May 2012 - 11:24 AM

I received this today from Bristol-Meyers Squibb. Nice packaging. Makes me eager to take this stuff.

(p.s. this is a free Sprycel sample - like I have a choice)

BMS_small.jpg


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#2 triciad

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Posted 11 May 2012 - 12:30 PM

Hi Scuba-

I know what you mean.  My Tasigna boxes have stickers all over that say "cytotoxic agent...dispose of properly".  And we get to ingest it. 

It's keeping me alive so no complaints.



#3 CallMeLucky

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Posted 11 May 2012 - 12:34 PM

Now we can have another lengthy debate about how TKI drugs are not Chemotherapy (despite the bold neon font)


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#4 Susan61

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Posted 11 May 2012 - 01:48 PM

Hi Lucky:  I always refer to my Gleevec as my Oral Chemo.  If its killing cancer cells then its a Chemo.  I know this has been discussed before.  I do not care what they call it, its CHEMO.



#5 LivingWellWithCML

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Posted 11 May 2012 - 02:11 PM

That's funny!!  My latest Gleevec packaging had this as well.  I regret throwing out the label -- I should hang it on my office door, so that folks will leave me alone and let me get some real work done.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#6 0vercast

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Posted 11 May 2012 - 02:26 PM

Who'd want to put that in your mouth?  That's what my Hydroxyurea package looked like.  Rather than wash my hands afterwards, I was instructed to wear glove to handle my own pills so that I wouldn't spread it around the house.  They made a big deal about it.  Gave me gloves and everything.



#7 pamsouth

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Posted 11 May 2012 - 03:14 PM

For (ME) all practical Insurance purpose, this phrase is critical;  (or I am in trouble with my insurance)

          ""ONGOING ORAL CHEMOTHERAPY DRUG"" 

In the dictionary, look up cancer and chemo. 

PamSouth


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#8 pamsouth

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Posted 11 May 2012 - 03:18 PM

Overcast, Ref to Hydrox;

Right and I took Hydrox for about a month to bring down platelets counts and waiting to see if I wanted to go on a clinical trail.  Wish I had never taken the stuff.  But what did I know back then.  Toxic poison. Sent me to the hospital felt like I had an elephant on my chest.  The onc said oh your body just going thru changes.  Easy for her to say, what do you do when you have heavy weight on your chest and you can't breath.  Tell you what I did against doctors order, cut my hydrox in 1/2.  I least I could breath and the pressure left.

PamSouth


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#9 Trey

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Posted 11 May 2012 - 05:15 PM

It is less about pharmacology and more about lawyers.

The term "chemotherapy" means literally "chemical therapy", but the usage of the term is reserved for potent agents that are not targeted.  As a "biologically targeted therapy", Gleevec is more like a bullet, and chemo is more like a shotgun.  If someone took chemotherapy every day, they would not survive very long, since it kills a lot of good cells along with the bad.  Also, you will never hear Dr Druker, Dr Shah, Dr Goldman, Dr Talpaz or any of the most notable CML experts call these CML drugs "chemotherapy".  Dr Druker's bio makes a point to distinguish Gleevec from chemotherapy:

"He began treating patients in a community cancer clinic half a day a week—an  experience that cemented his desire  to develop targeted drugs to attack cancer cells without the harmful side effects of chemotherapy."

http://www.hhmi.org/...druker_bio.html

(See  para 3)

If someone says the "broader" use of the term would apply to TKIs, then it would also apply to aspirin and every drug that is not a naturally occurring substance.  But if Dr Druker refuses to call TKI drugs "chemotherapy" then so shall I.



#10 Happycat

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Posted 11 May 2012 - 05:44 PM

Love the picture, thanks for the laugh!  It is ironic that they package it with that label, then have us ingest it.  What a hoot!

Trey is bang on about the lawyers. It's all CYA.

As a chemist, I handle stuff like this in the lab, but I always wear gloves there. At home, I just handle the pills with my bare hands. And I don't even wash them afterwards (le gasp, as my dd would say)!   Product safety pretty much mandates that you don't send people home with drugs that would cause problems just from handling it. In such cases, there's a coating to prevent dermatological contamination. (All bets are off if you break the pill and handle the powders inside though.).

I won't even go into chemo definitions - but I will say this - Better living through chemistry, yeah, baby!

Traci



#11 pamsouth

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Posted 11 May 2012 - 07:11 PM

Happy Cat,

Regarding ">>(All bets are off if you break the pill and handle the powders inside though.)<<

What happens to those who break the drug open to dissolve it in water and ingest it?

What happens when the pill breaks down in the body?

PamSouth


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#12 Happycat

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Posted 12 May 2012 - 01:17 PM

Pam,

That depends on the drug. Skin is a pretty good barrier, so as long as the material isn't too caustic, it is likely fine. But you should wash your hands, don't leave the chemicals on there. Some things will cause irritation after a prolonged period, so always wash if you handle the powder.

I would contend that if manufacturer says you can crush a pill and dissolve it and drink it, then it is not likely to be all that harmful to the skin. They don't want to get sued for causing burns, so if it isn't safe, they would not tell you to do it. Still, it is always good practice to wash your hands.

Some drugs (like real chemo) are incredibly toxic. Thus, you will see nurses who administer it wearing gloves. The really toxic, dangerous drugs are generally administered by qualified medical personnel. And the patients are monitored. Only relatively safe drugs are prescribed for home use and self administration.

Traci



#13 Susan61

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Posted 12 May 2012 - 01:48 PM

Hi Traci:

     I see the concerns over the powder inside the tablet.  So many people break their 400mg tablet in half to take 200mg at a time.  I never heard of any concerns, but I did read that a pregnant person should not handle the pill.

If my Oncologist decides to switch me to 200mg, and I still have my 400mg. tablets left I was going to break it in half.

Also they are scored for that purpose.  My other question is if Gleevec comes in 200mg. tablets or do you have to get 100mg.  I ask this because I was checking with my pharmacy pricing, and there was no 200mg tablets listed.  Only 400 and 100.  Like you said wash your hands after handling.



#14 0vercast

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Posted 12 May 2012 - 02:51 PM

The term "chemotherapy" has a stigma attached to it.  I think from a doctor's and patient's standpoint, it's best not to call it chemotherapy.  Nobody want to do "chemo."  Most people who aren't all that familiar with cancer are scared of that word.  You mention "chemo," and they wonder why your hair hasn't fallen out (true story).  It's infamous for making people feel lousy, making them look and feel like "cancer patients."   Calling it something else will naturally put a person mind more at ease with their treatment, and that might actually affect their physical well-being.

For that reason, even if TKI drugs were actually chemotherapy, I would probably refer to them as something else.



#15 pamsouth

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Posted 12 May 2012 - 04:32 PM

Happy Cat,

Every month Medco call me to schedule my Gleevec Shipment and ask a few questions.  A few months ago when Medco called she said there was a new rule you could not crush the Gleevec but it was Ok to cut where the 400 mg are scored. 

I recently read where someone on the board was dissolving the TKI in water to take.  That got me to wondering what is the difference between crushing and dissolving in water.  I asked the lady from Medco, why the new warning, as I have been taking Gleevec since 2005, she did not know.

I did talk to the pharmacist, he just said I could cut where the 400mg is scored but not to crush, no reason why.

Susan,  back when I first started on Gleevec in 2005, when my white cells got down to 1.7 I had to go in the hospital for 3 days of IV antibiotics, then a drug holiday, then when back on low dosage until my white cells came back up.

At that time there was only 100mg and 400mg of Gleevec. That has been a few years ago, I don't know if they have changed, what mg they come in.

PamSouth


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#16 WoofWoof

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Posted 12 May 2012 - 04:56 PM

My Tasigna comes in the same type of bag, I re-use the bag & never have a problem with anyone trying to take my stuff.


I have cancer but it doesn't have me


#17 PhilB

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Posted 13 May 2012 - 01:13 PM

Triciad posted:

"My Tasigna boxes have stickers all over that say "cytotoxic agent...dispose of properly".  And we get to ingest it"

Overcast posted:

"Who'd want to put that in your mouth?  That's what my Hydroxyurea package looked like."

Whilst Happycat posted:

"It is ironic that they package it with that label, then have us ingest it"

I think I may have found the solution to some of the gastric problems people have been suffering.  YOU ARE NOT SUPPOSED TO EAT THE PACKAGING!



#18 pammartin

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Posted 14 May 2012 - 09:56 PM

Scuba,

The first time I received my Sprycel it looked very much like your packaging on the inside of the box, but the outside was very reserved.  Then the box is opened, first one finds the packaging bubble wrap that has red and yellow stickers on it, (they don't stick well to bubble wrap) then you get rid of that and you are to the plastic bag in your photo.  I had to slide back up and look, mine is a glorified zip lock bag, but the ominous labeling is similar to drain cleaner and possible hazard notes.  Then you unwrap or in this case unzip the bag and finally reach the actual pill bottle.  There is one more piece of tape that goes around the top of the bottle and reaches from side to side.  Finally you get to the pills!  Then you read the warning label on the bottle, wash hands if touching pills, that is the one that aways gets me...........ok I can wash my hands, but is taking the pill with water washing your throat?  I don't use soap when swallowing so am I missing a step here?????  I just saying............



#19 p.a.m.

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Posted 15 May 2012 - 07:56 AM

Some post are quite funny, but this is CHEMO 100%.  Ask the maker of it. Or better yet, the government!  It is not covered under Medicare part D prescription drug plans or Part B, unless administered in a Hem/Onc office for a warranted situation. Humm Life/Death? I ask why and the response I receive is ORAL CHEMO such as this is not covered.  Sorry, I worked in major hospitals for 20+ years and in the research arena to long and saw way too much!  Doctors and Drug Companies---Cover Their A's all the way.


Dx: 04/2007 WBC 265,000

Tx: 2007-2014 400mg Gleevec

      2014-2017 100mg Sprycel for 4 months, repeated infection dose reduction 50mg


#20 Happycat

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Posted 15 May 2012 - 03:41 PM

Probably call it chemo so they don't have to cover it

And the cynic in me says Novartis calls it this to justify the high price. Definitely not based on reality of mode of action






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