14 replies to this topic

[Dom]

Are there people around here who were diagnosed with CML before there was Gleevec? If it's not prying into things that should be private, I'd like to hear about it. Did you Find out about gleevec all at once, or did you know that there was something afoot but not yet approved? My onc said, "I use to tell people like you to get your affairs in order and find a hospice with plenty of morphine". Is he just being dramatic?

I'm asking all this because I still can't believe how lucky I've been to be diagnosed after gleevec.

[mikefromillinois]

Dom, I think we have people here who were diagnosed before Gleevec was available.  Maybe they will see your post and reply.

 

I was diagnosed about 4 years ago and remember my doc telling me that CML was being treated very successfully with a couple "wonder drugs".  He too mentioned something along the lines of 'before these drugs came along' he would tell new patients they probably had about five years left.

 

For the past couple years I have been seeing my doc every six months.  I saw him yesterday.  We talked about my bloodwork for about 10 seconds and the rest of the visit talking about personal stuff.

 

I too believe we are very lucky to have CML after the wonder drugs were rolled out!  Good luck to you...

[Marnie]

Susan61 was diagnosed before Gleevec.  I'm sure she'll jump in and tell her story, though she hasn't been as active lately. 

 

Marnie

[Trey]

Very few.  Most of them did not survive the CML.

[Billie Murawski]

The onc that dx me,said that before Gleevac there was nothing that could be done. He never even said there were different treatments they try. Thats  why I had a new onc within three weeks.

[PhilB]

I'm asking all this because I still can't believe how lucky I've been to be diagnosed after gleevec.

Yep.  It really hits you again when you've been taking the drugs for a few years and you realise that you would almost certainly be dead if it hadn't been for the drugs.

 

Pretty well all the survivors from before TKIs are those lucky enough to be diagnosed very shortly before Gleevec came along.and I can't imagine how lucky they feel to have been pardoned when on death row.  Those from earlier didn't get the chance. 

[Dom]

"Pretty well all the survivors from before TKIs are those lucky enough to be diagnosed very shortly before Gleevec came along". That's what I'm talking about. Not someone diagnosed in 1990, but someone diagnosed in 1999, or 2000. Did they know that Gleevec was close at hand? Or did it come as a surprise?

[Lucas]

there's a guy here (oldtimer i think) who was on gleevec clinical trials. he's almost 17 years on gleevec. before that the only chance was a bone marrow transplant - and the transplants were worse than nowadays. i remember a guy named skip who was/is a 36 year cml survivor

 

http://easyskip.tripod.com/ 

[triciad]

I just celebrated my 10 year anniversary this month.  When I researched CML on the internet back in 2005 most of the websites were older and said 3-5 years if you didn't have a transplant.  I soon learned to look at the date before I read anything because a lot of it was pre-Gleevec and very scary. 

 

I rarely post anymore but check in every few months just to see the interesting discussions.  I know that there were several with CML on the posts back then who were pre-Gleevec and I'm pretty confident that most of them are still fighting the good fight.

 

Blessings to all!

Tricia

[PhilB]

"Pretty well all the survivors from before TKIs are those lucky enough to be diagnosed very shortly before Gleevec came along". That's what I'm talking about. Not someone diagnosed in 1990, but someone diagnosed in 1999, or 2000. Did they know that Gleevec was close at hand? Or did it come as a surprise?

Susan is the person for you to talk too.  As has been said she's not about as often as she used to be, but has spent so many years helping an encouraging others on here she is definitely allowed some time off!

 

Part of the problem with finding the people you are after is that the average age to develop CML is over 60 which means that a lot of the early 'stars' of the CML battle have passed away since of other conditions / old age. The drugs will have come as a surprise to most people as Gleevec broke all speed records in going from first trial to general use.

[BPilgrim]

Hi there. I was dx with CML before Gleevec. I was on a combo of Interferon and Ara-C, which I had to inject into my stomach or legs every day. My body was covered in red injection welts. I spent 5 days out of every month with 104-degree fevers in urgent care. And the drugs had awful psychological effects. Not to mention the nausea, vomitting, dizziness, neutropenia, etc.

 

So Gleevec is a truly beautiful thing. I still have some serious side-effects, but no more fevers, no more shots. And it works! Plus, no more life & death decsions between experimental drugs and unmatched Bone Marrow Transplants.

 

You are very, very lucky to be dx in the era of targeted TKI therapy. Dr. Druker and his fellow pioneers of Imatinib deserve a Nobel Prize for what they did.

 

Take care.

[Dom]

Thanks for that story, BPilgrim. I can only guess how happy you were when they moved you to gleevec. My own story is very different. The onc told me, you have cancer but it's not bad. He told me about the pre-2001 days, but then added, now it's just take a pill each day. Boy, did we dodge the bullet or what?

[bmtx3]

Hello

 Yes there are CML survivors out there before Gleevec. At the age of 37, I had 3 bone marrow transplants, two from marrow of the hips and one from stem cells from the arm, which was all new in 1994, all 3 done within 9 months span. My brother was the donor. They say I was the first documented person In USA to do so and fourth in the world. It certainly was a rough ride, as I almost died. They labeled me the miracle woman.  Proud to say I have been in remission now for 20 years 6 months!!

[Dom]

So you went form a bone marrow transplant every three months to one pill a day. Astounding! Give Brian Drucker a Nobel.

[bmtx3]

No I didnt get gleevec, It didnt exist. It was chemo the kind that gets rid of the immune system in 6 days, then radiation and god knows what all..Wish they had gleevec back then.