Anyone with real gleevec experience for DFSP ?

quebec09
quebec09 Member Posts: 4
I am really interested in talking to someone who has experienced Gleevec to cure DFSP especially. In all probability, the experience would be fairly recent. Mine in is my face, and it is my only option (and for it to work as well) in order to keep a straight face.... I understand it will also require me to stop all alchool and encounter quite a selection of short term known side effects, and unknown long term ones, may be?... Up here, they tell me I would be the real first case... I understand a few studies have been done and have read much on internet, but to chat with a real person would be great!!! I am about to start in a few weeks, so please hurry...Thanks and good luck to all

Comments

  • lacretia
    lacretia Member Posts: 4
    DFSP and Gleevec
    My 15 yr old son has been on Gleevec for over a year. I would definetly recommend this to you. His tumor was reoccurent and fairly large as in the size of half of a football sticking out of his abdomine. It is now not visible to the naked eye. There are some side effects, however my son has only experienced nausea. I switched the time he takes it to night time after dinner and just before bed and he has not experienced the nausea since. I would advise you to drink plent of water while taking this medication and be sure not to drink alcohol or gaterade as it interfiers with the medicine.
  • hollyberry
    hollyberry Member Posts: 173
    lacretia said:

    DFSP and Gleevec
    My 15 yr old son has been on Gleevec for over a year. I would definetly recommend this to you. His tumor was reoccurent and fairly large as in the size of half of a football sticking out of his abdomine. It is now not visible to the naked eye. There are some side effects, however my son has only experienced nausea. I switched the time he takes it to night time after dinner and just before bed and he has not experienced the nausea since. I would advise you to drink plent of water while taking this medication and be sure not to drink alcohol or gaterade as it interfiers with the medicine.

    No DFSP but Gleevec foe Melanoma
    I have had wide-spread metastases from melanoma and was actually weeks away from dying. I went on a clinical trial of Gleevec and have had miraculous results. My PET scan showed wide-spread mets in my brain and lungs, with tumors all over my abdomen and in my kidneys and liver. The next month (this month) I have no tumors in my brain, my lungs and kidney tumors are almost gone and I feel great. Aside from the nausea and a little fatigue, I feel very well.
    I don't know how it works for other cancers but, it sure worked for me. I will keep you in my prayers.
    Much love,
    Hollyberry