I've been on Gleevec since February of 2000 and recognize many of the side-effects you are having. If you have to switch from Gleevec "they" will not switch you to the old meds but will put you on one of the other new meds available. Some people are having much fewer problems with tasigna. The "puffed up toad" look is standard with Gleevec, it's called periorbital oedema and never completely goes away. Almost everyone on Gleevec gains weight, from ten to twenty- five pounds. Some of this is oedema: if your ankles are swollen or you are having trouble breathing, ask your doctor to treat the oedema with lasix or another medication like it. Also, the problem you are having with "heartburn" is usually treatable. Gleevec is a very strong medicine and in many people it irritates the esophagus, which is probably the "heartburn" you're feeling. One of the ways to handle this is to take Nexium or one of its cousins until the irritation settles down. Another way to handle it is to take a half dose of Gleevec in the a.m. and the other half dose in the p.m....with your doctor's agreement, of course. I did both, and that worked for me. As for the depression, I had that, too: I couldn't figure out how I was going to live the rest of my life with the CML threat hanging over my head, how I was going to accept that I had a chronic illness and so on. I tried a psychiatrist, but that was no help at all. Tried some anti-depressants but those made things worse. Finally, after my esophagus healed, I began eating a piece of very dark chocolate, 70% dark chocolate content or higher, every night. In about six weeks, the depression lifted. I'm not saying that this would work for you but it did for me and I'm just passing on what helped me. Each of us is different, reacts differently to medications, each of us is a one- person clinical trial. You'll have to find what works for you, what lessens the side-effects. Many of us are on Gleevec because we're on the clinical trial: what normal human being can afford $30K+ a year? If your oncologist doesn't try one thing or another to bring your side- effects under some sort of control, if he/she doesn't KNOW what to do, then email Dr. Druker and ask him. I'm sure some of our partners who contribute to this website have his email address. He is very generous with his time, will answer your questions and will suggest what you might do. The one thing is, write out your questions beforehand and work out the best brief, logical manner to ask them. Of course, you should let him know how distressed you are but I found it better not to ramble and take up too much of his time. It may take a while, but you should hear either from him or from Carolyn, his assistant. I'm not sure if she spells her name Caroline or Carolyn, but she is as helpful as Dr. Druker is. Courage! Which is what we all need. Vivi
On Aug 24, 8:29 pm, kellyelise <[EMAIL PROTECTED]> wrote: > Hi Suzzie: > > I went to a psych in February 2008 due to the extreme depression and > anxiety I was experiencing (about 2 weeks after starting the Gleevec). > He put me on leave of absence from work that day. I have not returned > to work. I really don't think I can do it anymore. The neck, thoracic > and lumbar pain is very limiting, not to mention the depression and > anxiety. Just the thought of returning to work causes panic attacks. > It has ruined us financially. I am in a drug study and cannot afford > to pay for my meds...........so, I am stuck with the Gleevec or they > will switch me to some of the "old" meds that are not as effective. I > look like a puffed up toad. My face, eyes...........ugh. Everything > swells. I am only 49 years old - too young to feel as old as I do, but > I keep pushing along. And, yes, I am at 0 - so everything should be > hunky dory, but, I still have fatigue (have to nap around 3 hours a > day), nausea, toxic heartburn, wah, wah, wah. Screw it. Try to live as > cheap as we can and hope we can manage on 1 income. Otherwise? I don't > know what the hell we are going to do. Keep fighting my insurance > company for my measly disability payments............BUT.......I love > summer! I love the smell of the outdoors. I love the sun, the trees, > the plants, the blue sky - any sacrifice is worth enjoying life! > Kelly > > On Aug 22, 3:22 pm, Suzzie <[EMAIL PROTECTED]> wrote: > > > > > This is a message for everyone. How many of you had to stop work > > because of the side effects of Gleevec, plus the depression etc. > > I myself had to stop working, and people do not understand what your > > going through if your doing well on your medication. > > I am just curious how many besides me, just could not handle working > > anymore.- Hide quoted text - > > - Show quoted text - --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
