29 replies to this topic

[Oldtimer]

I was the second patient at M. D Anderson to start on Gleevec. I have been on Gleevec since August 1998.  I don't know of anyone who has been on it longer than that who is still on it. I'm also curious as to the answer to this question.

[Trey]

Zavie started Gleevec March 27, 2001.

http://www.mail-arch...m/msg09145.html//www.mail-archive.com/cmlhope@googlegroups.com/msg09145.html

[LivingWellWithCML]

Oldtimer -- wow, 1998?  That is amazing to hear, and for someone who's still early in Gleevec treatment, you give me much hope!

Do you mind if I ask what Gleevec dosage you started on in 1998, and what dosage you're on now?  Are you PCRU, and if so, have you considered trying to stop Gleevec under careful monitoring?

[Oldtimer]

Dan,

Hi, You're asking me to go way back. Of course I don't mind answering your question.  According to my online records at M.D. Anderson, I started with a dose of 75 mg in 08/98. By May of 1999, I ran my first 26.2 mile marathon in Alaska for the Leukemia Society (on 200mg by then) and by November of that year I completed a 111 mile cycling Century in Tucson, AZ for the Society.  My dose gradually increased to 800mg, in order to get a  major molecular response,  which I started on in 2003. I didn't reach PCRU until around 2005 (11 years post diagnosis), though that is something I never worried about, as long as my cytogentics are good. I think right now I am under the minimal detectable range for BCR-ABL, but I pop in and out that, but not drastically, and there is no need for other TKIs.  I was diagnosed 12/94 at the age of 37. I am 54 years old now. I was an Army Major stationed in Warren, Michigan. I retired from the Army in 1995. From 1995 to 1998 I was heavily involved with bone marrow drives, as during that time, the only cure for cml was a bone marrow transplant. I was involved in forty marrow donor drives, both military and civilian. When I was first diagnosed, 342 people from where I worked in Michigan got tested as potential donors for me. The biggest marrow drive I had the honor of participating in was the 1997 Rick Hendrick/Department of Defense drive when they invited me to come up to Fayetteville, NC and do some newspaper and television interviews as part of their drive. The drive was for a teenage boy with leukemia whose was father was stationed at Ft. Bragg. The drive, I believed was called Operation Life Gift, set a world record with over ten thousand people volunteering to register as marrow donors. This was when they drew blood to register donors, and not the present day use of saliva to find donors. Of course, it took a whole week to test 10,000 people.

My first year on CML, I was on 5-9m of interferon.  After I moved to Atlanta, I put on a marrow drive in Columbus, Georgia, in 1996, which had a lot of television and radio support. This guy who had hairy cell leukemia and own a couple of car dealerships, came to the drive looking for me and couldn't find me. It was a long marrow drive, and I had to leave for a few minutes to do an interview. The car guy came back later, and told me his story. He said he had been near death, went to M.D. Anderson, taken even closer to death, but somehow this doctor named Dr. Talpaz saved his life. He urged me to call Dr. Talpaz.  I called Dr. Talpaz when I got back home, he picked up the phone and his nurse Sheila got on the other line, and they told me to come to Texas right away. That's when I started going out to M.D. Anderson. I tried various drugs, different trials, and so forth. Being diagnosed these days is nothing like it was back then (for most people). Back then, some of us were scared to death, because the only cure was a marrow transplant. Of course there might be a few exceptions where there might be that one patient who could survive long term on interferon, but it wasn't me.  Most people couldn't find a donor or were too old, and if they found a donor, they had to worry about host vs graft. And doing marrow drives was hard mentally because only a very small amount of people you ask to be a donor, have the courage to stick their arm out to be tested. I never found a donor. But if I had not done the Columbus drive, I may not have went to M.D. Anderson, and I probably would not be writing this. 

Dr. Talpaz had told me about STI-571 (Gleevec)  in 1997, before it was ready for testing in humans. There was a small group of us, in 1998, waiting for the start date. Dr. Talpaz said I was going to be the first person at M.D. Anderson, but his nurse Shelia reminded him he had told Mr._______ he would be the first guy. Dr. Talpaz, then said "okay you'll be second." I started the week after the first guy and I was very excited, especially since the interferon was not working, and I had 100 percent leukemic cells, according to the cytogenics.  I was at the four year mark past diagnosis, so I needed to do something quickly, because back then you never knew when you might go into the accelerated/blast stage and I was past due. Dr. Drucker's research was maturing at the perfect time for me. If I would have been diagnosed a couple years earlier, or if Dr. Druker decided to choose a different career path, you would be asking this question to a different Oldtimer. This was an astronomical discovery. I think the patients who were around then and are still here really see the significance of it. To newly diagnosed patients, they may wonder why there isn't something better with no side effects, like a shot or something, but this drug will save millions of lives.The first group of us phase I patients had to stay in Houston for nine weeks, because they kept testing our blood every day. I think the first day I had blood taken nine times. I still see some of the patients from the first trial.

As far as coming off the drug, I know that is not something I can do. Whenever I am less strict with my dose, my numbers slowly go back up, so my advice is try not to miss a dose. Now I know there are a couple of people that started way back then, I feel certain they can come off the drug, because they had better responses than I did, and have had CML over twenty years. I talk to one lady regularly, who has been PCRU since almost day one,  but she is afraid to come off Gleevec. She is on 600mg and will not lower her dose or miss a dose. Of course, coming off the drug would be like starting on another clinical trial and she's had enough of that.  But, I can see her point. If it is working, why rock the boat?  Now as I head toward my 18th year with CML, my role is to  stay alive for you, me, and others (as you say, I give you much hope, don't ever lose that). My daughter and only child was five years old and in kindergarten when I was diagnosed. I remember counting the years, right after I was diagnosed, trying to figured out how old she would be when "someone rolled my body down the aisle of some church." I had terminal leukemia and was trying to find some extra time. I kept going five, six, seven, eight. I was checking the numbers like it was a lottery ticket, thinking the numbers were wrong, maybe the tests would come back different.  You know what I mean, you don't just check a lottery ticket once, at least I don't. Now seventeen years later, my then five-year daughter has graduated from Harvard. Over the last eighteen years, I've seen a lot with the marrow drives, Team n Training marathons, and clinical trials from the patient point of view. CML patients seem to be a great group  of folks. I don't think I ever met a mean spirited CML patient, so you're in a good group. Of course you wouldn't want to be here if you could help it. I hit the lottery with Gleevec. Although every CML patient and case is different, there is so much hope for a good long term prognosis for all of us. And as you know, there are other drugs out there if Gleevec stops working, and the research continues.

Keep Your Head Up.

Oldtimer.

[Pin]

Thank you for sharing your story Oldtimer. You have come so far, and it really gives me hope

[CallMeLucky]

Oldtimer - You're story is amazing - I feel particularly close to your story as I was diagnosed at 37 and my youngest was 5 years old (my other son is 7).  I remember sitting their trying to figure out how old they would be when the inevitable came.  A year later, I feel much more optimistic, in large part due to stories like yours.

Thanks so much for sharing it - and thank you for paving the road for the rest of us......

[LivingWellWithCML]

Oldtimer -- What a story!  Thank you for sharing it.  I've already read it twice and am bordering on tears with the hope you give me (a father of three young kids [10, 8, 5]).  I'm also an avid runner and have been afraid to consider taking on another marathon .... for fear that the training will somehow make the disease progress in some way.  Your incredible athleticism in your early days of treatment is so inspiring, as well as where you are now -- so now I think a marathon could very well be in the foreseeable future for me.

Do you still live in Atlanta?  If so, please consider dropping me a message, because we have a local CML support group of great folks that would be in awe to hear your story first-hand...

[Oldtimer]

Hey Guys, Thanks,

I don't think the running will hurt you as there were quite a few folks with leukemia completing the marathons. When I was diagnosed, it was recommended that you stayed in shape in case you had a bone marrow transplant. As long as your heart is good, I don't see a problem with a progressive program of exercise. I had a EKG before I started training. I've been a runner since eight grade. I ran my very first marathon in 1972 at age 15 back in my hometown of Cincinnati. One of the other guys on the cross country team was excited about Frank Shorter winning the '72 Olympic Marathon, and got some forms to enter what I think was Cincinnati's first marathon, and talked me into running the marathon with him. This was back in the days when not many people ran marathons, so only about fifty people showed up. I finished fifth, in 3 hours and 10 min, which was good considering I had never ran over eight miles in practice.

Yes, I do live in Atlanta. It's great you guys have a CML support group. No leukemia support groups were around when I was diagnosed. I was part of a general support group at my local doctor's office (Dr. Goldklang)  that I started going to in 96 or 97. I was orignially being seen by the VA hospital before that.  Brenda Stockdale ran the support group for ten years and we met once or twice a month. We had people with all kinds of cancer in the group. Brenda just published a book called Succeeding against the Odds. I live on the South side of ATL and I know there was a leukemia group that met on the North side, but that was an hour's drive away, and I was already in Brenda's support group. About a year ago, Rosalinda Raminrez told me about a wonderful leukemia group that meets on the South Side. It that your group? Either way, I don't have a problem informally chatting with your group. Hopefully, I won't bore them. I think the problem was the group met on Tuesdays, and I am teaching an American Sign Language class, on Tuesdays, at my church, until November.

[Oldtimer]

Dan, I tried to reply to your message earlier, but I keep getting a message that your mailbox is full. 

[LivingWellWithCML]

Ah, thanks - try now.....