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donaght

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    cooking, music, gardening, outdoors, my children
  1. I hope this reaches everyone who responded to my first post. I saw my oncologist today who agreed that I had a pretty severe rash. I got a prescription for Minocycline. She thought that might be enough but I'll be back in two weeks if things have not improved significantly. I was reluctant to use any lotions because of my history of skin problems, but after reading some replies, I started lathering on lotion, which has rally helped. I'm using a water based Vitamin E lotion which I apply after hydrocortisone. My doctor told me that the rash is a positive sign as well, so on we go. Thanks again, Tom
  2. Hello all, This is a general enquiry about the rash that Tarceva causes. I have been taking 150 mg a day for 3 weeks now and have had a very bad rash since the outset. The rash on my chest, back and arms is tolerable but my the rash on my face includes a whole array of pimples that remind me of my glorious days as a teenage pimplehead (I had very bad acne.) I would like to hear from anybody who can help me put this experience into perspective. I don't want to give up on this drug but so far it has been an incredibly disheartening experience. I've have eliminated anything from my diet that I know causes me to have acne (sugars, chocolate, etc...) Any other suggestions about dealing with the rash are welcome and appreciated. Tom
  3. donaght

    Angry!

    Rachel, I have a good sense of what you feel. Last winter I went to my 9 year old son's hockey games while getting radiation treatment and dealing with those side effects that followed. I always found myself wondering if I would see him playing again in the following year. I often looked at other parents who seemed oblivious to the possibility that this could be the last year they watched their children play. Many times I found myself seething with anger. I still do, because these events are unfair. I try to remain aware of how angry I am, because I find it encourages me, not always successfully, to reach out to more people. I hope this helps you some time. Tom
  4. Thanks for the replies. It is odd that this alternative appeals to me, while most do not. I guess I liked hearing how the drug killed cancer cells during the the first trials (on rats) done in January, 2007. In any event, I plan to investigate things further before deciding. I don't wish to sacrifice my quality of life more than is absolutely necessary. Tom
  5. Hi again, glad to hear you won't need the decadron. I've never smelled any burning during any of the radiation I've had. I can't guess what that might be about. But if it bothers you maybe you should mention it to see if anything can be done. Tom
  6. DCA (dichloroacetate) is a drug that was recently found to induce the death of human breast, lung and brain cancer cells that were implanted into rats, while being non-toxic to healthy cells. This research was published in Cancer Cell, 11, 37–51, January 2007. DCA has been found to kill cancer cells by a newly discovered mechanism that appears to be common to several types of cancer. No formal research has yet been done to determine if it will work on cancer within the human body. Earlier this week Health Canada (the governing body responsible for supervising drug trials) approved a small human study on the use of DCA to treat brain tumours. I'm 42 and have terminal lung cancer. Among other problems, I have a brain tumour that has been treated twice with radiation and, if there is no response to the latest treatment, I will have run out of options. I am aware that some people have begun taking DCA on their volition. Does anybody have any experience with this? Any information or ideas or tips will be welcome. Thanks, Tom
  7. I was on Decadron during wbr. I took 4 mg 4 times a day for 4 weeks and then slowly weaned off the drug over the course of six weeks. While on the drug I became an insomniac. I was down to 3 or 4 hours of sleep every day and spent most of my waking hours being active. As the drug built up I became more irritable and edgy. My appetite increased as well, but that was important. Coming off the steroids was harder. I suffered from swelling (edema) and cushinoid syndrome. I got a strange rash on the legs. The blood vessels constricted interfering with the blood circulation through my hips and knees. That caused the most pain and it was hard to treat except by taking lots of Tylenol 3 (with it's own side effects.) Unfortunately, the withdrawl of the steroid overlapped with delayed fatigue from the radiation, so when I crashed, I really crashed. I was always a very active person and found ways to stay busy at home and off the couch. Being unable to get off the couch was so depressing. But as I didn't have much choice in the matter of whether to take the drug or not, I made the best of the situation. good luck to you, Tom so that blood flowing through my hips
  8. I had 15 days of wbr in January, 2007 to treat three brain tumours in the cerebellum. I was prescribed 4 mg, 4 times a day. When the radiation was completed, I was gradually weaned off the steroid. By that time, the drug had seriously affected my mental health. I was irritable, edgy, impulsive, ocasionally reckless. I was down to sleeping a maximum of 4 hours a night, even with sedatives. When I was awake, I was fully alert. So while a lot of overlooked chores were taken care off, I was building towards a serious crash. I as also waiting for radiation fatigue to manifest. As I reduced the intake of decadron, I began experiencing swelling (edema) in the face, neck, lower legs and arms. I also suffered from swollen hip and kneee joints. I was told the steroid caused the blood vessels to constrict creating pressure on the joints. As I feared the worst of the radiation fatigue and steroid withdrawl overlapped and I was left with little to do but manage the pain with Tylenol 3 and Advil. It seems to have worked; at least I was free of tumour trouble until the begining of September and was able to salvage a canoe trip and other summer activities with my two children (9 and 2). Good luck, Tom
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