New Member
Posted 21 April 2011 - 03:45 PM
We just got the May issue of Smithsonian and there's an excellent article on CML! It discusses CML in depth and focuses on Dr. Druker's research that led to the development of Gleevec. It discusses the Philadelphia chromosome and the disease/treatment in a lot of detail. You'll want to read it and may want to recommend it to friends/family/other interested parties too.
BethS
Advanced Member
Posted 21 April 2011 - 04:31 PM
That is an amazing article, thank you so much for sharing it.
If anyone else is interested in reading it, here's the link
http://www.smithsoni...html?c=y&page=1
Thanks again
Advanced Member
Posted 21 April 2011 - 06:13 PM
Thank you Beth,
I enjoyed reading the article.; it gave me a much greater appreciation for Gleevec
Buzz
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
New Member
Posted 23 April 2011 - 02:10 PM
Thanks so much for this Beth!
We ALL hate the Gleevec side effects but it hits home that they SURE beat the alternative!!!!!
Advanced Member
Posted 23 April 2011 - 03:50 PM
Beth. . thanks for mentioning the article, and Lucky, thanks for posting the link.
I forwarded the link to my mom and my mother-in-law, both of whom really appreciated it. I don't talk much about cml with them, so it gave them something to grab hold of. Brought my mom to tears, and she says Dr. Druker is her hero, too. Sappy, yes. But I know she's been frustrated with my lack of information to her. What a surprise to find out that Druker is from Minnesota, my home state! And it's so cool to be able to say that I've e-mailed him a couple of times and he has responded immediately. Same with Dr. Shah. I am amazed that they make the time to respond to people they hear from out of the blue. Pretty incredible.
New Member
Posted 23 April 2011 - 05:01 PM
It's been great for my family and friends to read and appreciate. I don't think they understand a lot of the science behind it, but neither do I! :-D
I think the explanation of the disease itself, though, is excellent and I'm glad others got so much out of it too.
BethS
New Member
Posted 24 April 2011 - 01:26 PM
Happy Easter! I thank you for letting us know about this article---we get the magazine, and I saw my husband reading it this morning....and my daughter is planning on using it in a college class this week!!! I do have a problem with it----where are the next few paragraphs explaing how potent this drug is and how it is as a patient to take it! WE ARE VERY LUCKY TO HAVE THESE DRUGS------but I was hoping extended family members would get the whole picture from this article.......and hear of some of the quality of life changes.......since so many people think we get a pill, cancer is gone, and life goes on as it did before the diagnosis.
Thoughts???
~lala
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