On 7/22/2008
joansaysbronx wrote:
Hi to all-i was operated on thanksgiving day of 2005 with gastro intestinal stromel tumor.i took gleevec for 2 months and had a bad reaction and was rushed to emerency. Then in march of 2006 i started sutent i was unable to take the program for 28 dys on & 2 wks off. I try 4 dys on with 3 dys off. My side effects are painful. Starting from the top of my head to my toes- i get headaches-my hair is falling out-my eyes are constantly tearing and the corners seem like i have a sist which hurts-my mouth and tongue have sores and my my gums bleed-i constantly have stomach pain and spend lots of time going to the bathroom-my hands and feet grow skin which hardens and it is difficult to walk-most of the time i spend sleeping for i am so weak. I am writing this to see if anyone can help me for i am very close to giving up.my intentions are to keep buying sutent which is expensive and throwing them out without telling my husband and family who give me lots of support. I was told by my doctor that i will have to take this for the rest of my life (what life) as i write this i am crying my eyes out. If anyone could relieve me even one discomfort i would give them lots of hugs. Joan
Hi Joan,
I saw your message when you first posted it, but did not respond because I don't know anything about sutent - I figured someone else on the board could help you more.
I see you no one else responded, either : - (
so I'm wondering if things have gotten any better for you, and I'm wondering if you have tried posting on other parts of Cancer Compass, e.g, stomach or colon cancer, or the "other" category? Seems like not a lot of people frequent the nutrition board, certainly in comparison to the boards for specific types of cancers
Sounds like this sutent is really throwing you for a loop. I certainly wouldn't keep buying it if you're not going to take it - you could be using that money for stuff to start building your immune system and nutritional status back up. And it sounds like that most definitely is what you need to do - if your husband and family don't see that/tell you that you must continue with the sutent, you need to put your foot down and tell them you can't, because is seems like it's doing more harm than good.
Also, have you gotten a 2nd opinion about how you should be proceeding with treatment? If you haven't, I would highly recommend that you do. I question a practitioner that insists someone stay on a medicine that is so obviously making you them ill.
I'm sorry no one else stepped up to offer support with this problem. I hope I have been able to give you at least a little bit of help.
Please do whatever you need to do to take care of yourself. Quality of life is certainly every bit as important as quantity of life, especially for you with a family to take care of.
I wish you the very best.
Sincerely, Tre