hi my name is Nelson and I am 23 and a Sergeant in the marines on the day I was supposed to leave the marines I found out I have Chronic Myeloid Leukemia CML they it could have been b/c of radiation from Iraq or Afghanistan but of course they won't admit to that Imediately I was put on Hydroxyureia then put on Gleevec 400mg and it's been 2 months and my blood is back to normal everyday I feel pain on my legs and headaches from the gleevec and I take Advil for it I've been seeing so many different doctors and they all keep telling to look into a BMT while another one says Gleevec is the miracle drug I am not the same person anymore I used to run everyday and now I can't barely walk down the street without feeling pain on my legs and now I'm being treated for post traumatic stress and they put me on zoloft and seroquel I'm exhausted tired of doctors and pills can anybody give me some advice I can't even re-enlist in the marines I'm getting the boot
Gleevec is a wonder drug with a few drawbacks.
First, the side-effects that you are already experiencing are not severe compared with interferon or some other treatments, but would be nice to be free of the leg pains. Gleevec does not stimulate your immune system, to produce a generalized response and multiple severe side-effects like interferon does. It targets the specific gene mutation that causes the bone marrow to overproduce badly formed blood cells.
Second, CML can in some cases become resistant to Gleevec due to new mutation variants of the Ph chromosome. This is a good argument for BMT, but there are risks associated with bone marrow transplants, too.
Third, Gleevec is the standard first line treatment and has been for several years. Research has not been idle during that time. Second generation drugs are likely to be approved by FDA this year. While these second generation drugs are not yet available outside of government approved testing programs, the preliminary results have been excellent. (See Bristol-Meyers and Novartis websites as examples).
Fourth, Gleevec is expensive. Any of the second generation drugs will be expensive, too - once they are approved and available as treatment alternatives. However, if you are accepted into a manufacturer sponsored test protocol, the drugs are typically supplied free.
I was diagnosed about three weeks ago with CML in accelerated phase. The oncologist at a nearby hospital was not optimistic about the treatment he could offer and recommended that I let him transfer me to the UT cancer research institute and hope that they had more advanced treatment alternatives. I was fortunate enough to be admitted at M.D. Anderson cancer research institute in my home town. The oncologist here is optimistic of my complete remission in a year. The test medication I have been taking for about 15 days is the second generation drug from Gleevec's manufacturer. My blood counts are almost back to normal. The disclosure statement listed possible side effects, but I have experienced none of them. This drug is designed to address most of the known mutations of the Ph chromosome. Time will tell how well it works, but maybe by the time the drawbacks of this medication become evident, the third generation drugs will be ready for in vivo testing.
I'm a lot older than you, so BMT is not an attractive alternative for me. For someone your age, the possibility of a complete cure may be worth the risks of the procedure - especially if there is a closely compatible donor available.
Some of the 2nd generation drug test protocols may be closed to you while you are taking Gleevec and still in remission. However, some other tests may be specifically targeted for you if you relapse.
I feel foolish telling you as a Marine to never give up - but I'm telling you, anyway. Never give up. Things beyond your control may have gotten you into this mess - it could very well be that other things also beyond your influence will produce a cure.
God bless you, Soldier...thank you so much for serving...please know how much I admire you...I don't know that I could ever be big enough to do what you've done for us and for our country. Thank you! ! ! !
I'm sorry to hear about your illness...and I know you'll never give in to it. After all, you're a Marine! If you'll do more investigating over the internet, you'll find that there are many, many inspirational true stories out there...people who have conquered this fight...and you are so young...there is much to celebrate for you. You have incredibly good odds.
Last edited by Administrator; 05-27-2014 at 08:05 PM.
I am sorry to hear about what is happening to you. I was a 21 year old second class petty officer in the Navy when I was diagnosed with CML, February 12, 1991. I was sent to the VA in Seattle to receive a BMT and by the time I got there, I was in blast phase. This was before gleevac was even an option. I was told that I had less than a 5% chance to survive for 5 years with the transplant but A 100% chance of dying within 3 months without it. It was a tough road but 16 years later I am still here and working for the VA in Florida. I also suffered from major depressive disorder and am still taking meds as I relapse into depression every year or so. I know a veteran who is now in his 60's who was diagnosed with CML in 2001 and has taken gleevac since then and is doing great. Another good thing you have going for you is your age. I noticed that the younger guys did better than even the 30-40 year old guys. I also would strongly suggest that you speak with a good veteran's service officer with the Disabled American Veterans or the American Legion about possible service connected compensation through the VA. I am currently service connected for CML and Major Depressive Disorder, and it makes for a nice little check every month. Stay strong and positive. Believe me I know that is a hard thing to do, but you just have to do it. Let me know how things are going and if you need any help through all of the red tape or if you have any questions at all, please ask me.