24 replies to this topic

[pamsouth]

My CML Expert at a leading Cancer Hospital, recently admitted, his words, not mine.  >>There are a lot of politics going on regarding  these drugs. << I had been talking about the expensive TKI drugs and the patents and the hopping around from drug to drug, and the short trials.   It's just the truth, his words, ""politics"!!  Not blaming the oncologist/hematologist, it's only politics, not his fault!!

PamS

[rct]

Since nobody actually read all of the words I wrote, I'll try to paraphrase it so some can get it.

The supposition of the referenced article was that those found to have a large burden at diagnosis are indicative of complex disease or advanced disease.

I personally suppose from our last 7 years of experience that there are a variety of reasons to be of high disesase burden, and if there is one thing I am sure of, the guys that write this stuff would NEVER want to acknowledge that it is quite possible that missed opportunities for proper diagnosis could definitely lead to high disease burdens.  The reasons for those missed opportunities are well known to some and apparently not so well know to others.

Nobody at any time blamed drug companies or pharmaceutical reps, and quite frankly, if that few sentences from me broke yer sensitivity meter you might want to spend a little more time on yer knees thankin whomever that you've had the kind of life that would allow that and a little less time on the mean ol' internet.

rct

[SoxK9]

rct, you called pharmaceutical reps "drug pimps." I found that to be a pejorative term, as did a few others, apparently. But whatever.

I'd urge you to re-read the last paragraph of your latest post. I'm fairly new to this forum, but I sure didn't expect to find that kind of sniping on a board that's supposed to be positive and supportive. I think it's fair to say that anyone who posts on this board has had life throw them a pretty big curveball. Most of us do have a lot to be thankful for, whether it's because of doctors, drugs, or even support from forums like this. So that's what I tend to focus on with my prayers, not my level of immunity to the pain inflicted by someone's keyboard.

I'd like to think that, in some way, we're all in this together. So, I'm willing to forget about your posts on this thread, and wish you and your family all the best, as you, like the rest of us, try to deal with CML the best way we can. I hope you'll accept my olive branch, because I'm not going to have anything else to say on this topic.

[sarahboxley]

rct, I happen to agree with your suggestion and thoughts around delays in diagnosis and high disease burden. Very interesting topic. My point was only that adding negative connotations to that conversation steered it away from your true feelings and instead triggered a series of negative comments.

It would be a shame to miss out on constructive, potentially helpful discussions because of such a distraction. I hope that in the future we can all concentrate our efforts on productive conversation instead of making assumptions about each other's sensitivity meters and situations in life.

I wish you all nothing but the best and good health.

SarahB

[CallMeLucky]

Here's some interesting trivia about Gleevec.  I can't say if this is accurate or not, but it came from a very knowledgeable source.  The name Glivec was a name that was registered by Novartis for a different drug.  Novartis was actually working on a Glioblastoma vector.  When imatinib came along and they needed to put a name on it, they chose to slap the Glivec name on it because they already owned it and the Glioblastoma drug wasn't going anywhere.  The FDA did not like the name Glivec and made them change it to Gleevec in the US, but Glivec is the name used outside the US.

Thought that was interesting if true.....