12 replies to this topic

[SunNsand]

http://www.oregonliv...universi_1.html

[jsmiddiebrush]

Thanks for sharing, always nice to hear good news!    

Yesterday was the 10 year anniversary of the approval of Gleevec and I forgot to send a card!

[carrie]

We are blessed that our type of cancer has this miracle chemo pill. Yes we have side effects, but I am eternally grateful that I will be able to see my children grow up.

Four years on Gleevec. If not for Gleevec I might be dying right now or already dead and would have left my family behind.

With this drug I am still teaching school, enjoying my family, having new adventures,....and just living to the best of my ability.

Thank you Dr. Druker for having the knowledge and wisdom to develop this medicine for CML patients.

A grateful survivor,

Carrie

[Stevea]

thanks for sharing that link!  It's been a little over 9 years on gleevec for me!

[Susan61]

We are so blessed and your statement was so right.  I live with all the annoying side effects, but I am still here with my family after being diagnosed in 1998.

The Gleevec has been a miracle drug for me, and whatever comes with it as far as feeling tired, foot cramps, etc. has been worth it to me.

Thank God for Dr. Druker, and all the hard working people trying to find a cure for Cancer in General.  I have been on Gleevec 400mg. since Oct.of 2000.

Susan A.

[Oldtimer]

Great story. I would be dead if not for Gleevec and the people behind it. I found out I had CML from a Dec 94 MRI. Took interferon for four years. The summer of 1998, I started on Gleevec. I was the second patient at M D Anderson on the phase I trial under Dr. Talpaz. The first patient did not respond well and passed a little while afterwards. (There were three sites for the trial--California, Houston, and Oregon.  I think I started on around 70mg daily.  I'm still on Gleevec. No other TKIs. By May of 1999, I was up to 200 mgs daily and had completed my first 26.2 Marathon for the Leukemia & Lymphoma Society in Alaska and by November of 1999, completed my first Century Cycling event in Tucson. I'm not sure how records are kept because of privacy, but I would say Judy Orem is 'one' of the longest-living Gleevec patients in the world. There are some great survival stories out there and even better ones will be written.

[Susan61]

Hi:  So glad you shared your story.  You were starting on the Gleevec when I was just diagnosed in 1998.  Very fortunate that you were able to handle the Interferon for 4 years.  They had to take me off of it in 4 months due to liver problems.  They had me doing Interferon along with Ara-C shots every other week.  Not sure if it was the combination of the two or what.  I did not get into the Trial until Oct. of 2000 in New York.  I also am still taking my Gleevec everyday.

When I went into the trial I was informed of the person who had died during the trial, but I believe this person was taking a lot of Tylenol with the Gleevec.

I actually had to sign a release form that I was aware of mixing Tylenol with Gleevec.  I have never had a Tylenol since my Day 1 of Gleevec.

Yes, Judy Orem's name always comes up with her being the  longest living survivor with Gleevec, but I think you may be #2 survivor.  May you continue to do well as the years go by.  This Oct. is 11 years for me on Gleevec 400mg.  Sharing our stories is what gives people that positive attitude that we can beat this disease.

Susan 61

[Oldtimer]

Thanks, tylenol has never given me a problem. I have never taken a lot of it, but have taken it from time to time. Glad you still doing well. According to what Judy and some of the other articles state is that she started Gleevec in 1999 as the ninth patient at Oregon at over 200 mg, maybe 250mg. I started in the Summer of 1998 as the second patient at M.D. Anderson at 75 mg daily. There were three sites of testing with a total of 54 patients--(Oregon, M.D. Anderson, and California) during this phase I trial to see what dose was safe/effective. As far as Judy, I started as least five months before her and am still on the drug. She is probably the longest living gleevec patient at the Oregon site unless, the facts in the articles about her are wrong. Unless you have the facts on all 54 patients, there is no way to know who the longest living gleevec patient is, but it is not Judy. She may not even be second, third, fourth or fifth, but she is a good example of a long-living, surviving, and motivating gleevec patient.

[lkp1008]

Hello,

My son was diagnosed with CML when he was 18, started on Gleevec and he is now 32. 

[pamsouth]

Susan61 thanks for mentioning the incident with taking Gleevec with Tylenol, I did not know that.  I have been on Gleevec since 2005 and have taken Tylenol on a few occassions.

PamSouth

[Susan61]

Thats what we like to hear, and may he have many many more years beating this disease.

[CallMeLucky]

That's awesome lkp1008 - I'm very happy for you (and him!)

[rchinavare]

That is wonderful and so encouraging our son was dx at 14 with CML he is now 16 and has been taking Gleevec. Thank you for sharing!