Thank you Vivi and Greenie: All of my edema is in my face and abdomen - sometimes my legs get hard as a rock and feel like they could just split from the edema (I am on Lasix already). I am in a clinical trial utilizing Gleevec (so it's free) and they have offered hydroxurea instead - that to me is an "old" drug and not nearly as effective. They have not offered me Tasigna. My NP tried to get me lowered to 200 mg per day of Gleevec, but the doc doesn't want to hear it and refuses to compromise. I am afraid if I screw around with the dosage, the CML will come back. Strangely enough, I had serious ankle swelling while working but that has virtually disappeared since I've been off work. They started counting my pills every month and insinuated I was not taking my Gleevec every day as prescribed, come to find out the Protonix they prescribed me interefered with the blood levels of Gleevec - I am pretty sure Nexium is a proton pump inhibitor just like Protonix (PPIs interefere with Gleevec). I am taking liquid sucralfate for the heartburn as well as Tums but have not filled my Rx for Pepcid because I don't have any money (I just cashed in/sold the last of my old jewelry today so I could put gas in my car and make my car payment). My psychiatrist has kept me off of work but now my insurance company wants documentation from my attending physician regarding my "disability" whom I see only for thyroid checkups and Pap smears. WTF. As of right now, my husband's employer will probably be doing some big layoffs in the near future due to a new group of hatchet heads coming in to cut costs to make the stockholders happy and screw the worker bees in the process - all so the current CEO can retire with his golden parachute. So, my husband gets layed off, we have no insurance and no one is going to insure me ever again. I am presently enduring an appeal for SSD as I was turned down the first time. With unemployment rolls rising, healthcare costs increasing and a pessimistic outlook for the future (coming from a dyed in the wool optimist) - my only chance is to get SSD so I will eventually be eligible for Medicare. I look well (aside from the swelling), I am in complete molecular remission - so......according to the onc - I should be running marathons (I'm just lazy). I raised 2 kids by myself (ex- husband took off for parts unknown), bought my own home, worked hard and accomplished a lot. Now I am reduced to scrapping aluminum, selling my old jewelry and anything else that could possibly be worth something just so I can barely squeak by. I'm not asking for pity - that would make me feel even worse. I am just extremely pissed off at the state of this country that has reduced me to this shitty situation. I remember when having health insurance actually meant something. They paid. People worked the same job for 30 years and didn't get screwed out of their retirement. Now you are lucky if you can hang on to a job for 5 years and the 401k you paid into gets gobbled up by "fees." My husband and I were doing very well before I got sick. I guess we are all 1 paycheck away from disaster. So, the big question is, do I keep scrapping along to get by to see if I get the SSD or do I try on one job after another to see if I can find one I can handle? Thanks for letting me vent, Kelly
On Aug 26, 9:13 am, Vivi <[EMAIL PROTECTED]> wrote: > 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 -- 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 -~----------~----~----~----~------~----~------~--~---
