IL2

far2clever
far2clever Member Posts: 2
edited March 2014 in Kidney Cancer #1
My husband was dx with stage 4 RRC in Jan 2004. He has surgrey on his arm in Feb (rod put in) and right kidney taken out in March. Radiation was done on his arm also starting in March. We were told that IL2 was the only chance of survial with stage 4 RRC. We read all the info watched the videos given to us, by the doctor and went in for the 1st round of IL2. He only recieved 7 treatments before it was called off. In all the info it states that most side effects will subside in a few days after treatment is stopped. This was over 4 weeks ago and he is in worse shape now than he ever was before. He was doing pretty well not great but okay before the treatments now he can hardly make it out of the bed to the chair. Is this noraml??? The doctor said 2 weeks ago he will be feeling better soon and lets talk about the 2cd. round. Needless to say we have found another doctor. The new doctor said that Il2 works in such a samll percentage and is so toxic that is it worth the quality of life. Please if anyone has gone through IL2 let me know if your side effects were so extreme or if it is just his body. You can e-mail me at Debsnick2@aol.com Please put IL2 in the subject so I don't delete it. Thank you

Comments

  • billebach
    billebach Member Posts: 1
    #2
    Hi Bill is my name from Toronto, Canada. I took IL2 in Pittsburg, 3 times at a week each. More to come
    I think I took 7 the 1st time out of 14 or so, 6 the second and 7 the third. I did not have much of a proiblem with it except that I put on 30 lbs but got rid of it over the next week or 2. My doctor said the cure ratew was 5% with a 7 % slow down rate. My Kidney cancer spread to left lung, spine and liver. The IL2 cured the liver cancer. They cancelled further treatments (after the first) until I got the spine fixed. I had a 9 hour operation on the spine and then back to Pitt.
    It did not cure the lung & spine. I was first diagnosed with RCC a Feb 2003. The operation, diation and cancer paralysed me from the waist down. I am getting a little movement 4 to 6 inches in my feet after a lot of workouts.

    I did not have any serious problems with any treatment that I have taken. Although it is not supposed to work I did 2 sessions of Radiation and am currently taking Chemo GEMCITABINE at the hospital and then go hme with an infusion pump which shoots some 5 FU every 6 minutes for 7 days. This treatment seems to be working a little.
    FU = FLUOROURACIL. The treatment is 3 weeks on and 1 week off.
  • JoBubba
    JoBubba Member Posts: 8
    #3
    I sent you an email? Did you get it? My husband and I have been wondering how your husband is doing. I have been praying for you both. Please let me know if I can give you more info. about our experience with IL-2. Hang in there. Jo
  • kazooie68
    kazooie68 Member Posts: 1
    #4
    My wife was diagnosed with rcc in July 28. She had a nephrectomy and a craniotomy in Aug 18. 3 weeks later she started ILL 2. Somehow she took all 14!! She does not remember the hospital stay much, but I do; it was hell. Towards the end, she got delirious and swelled from the fluid flushes. It was intense treatment but she did well. The nurses could not remember the last time anyone took all 14. When she got home, she was miserable; they told her the ILL 2 symptoms would disappear after 3 days. 4 days later of feeling really crappy, she was discouraged. I read her success stories the Proleukin web site. All the stories described the same hell she was going through; they all said never give up!!

    She found courage and strength; there were 2 weeks to prepare for her next interleukin treatments. The 2nd set went much worse. She threw up, broke out in hives, and her blood pressure would not stabilize. They quit after 2 doses, waited 24 hours, and started again. She took another 5, but had to quit; her blood pressure dropped way too low. She had gained 33 pounds from all the fluid flushes and was not urinating anymore. My baby girl looked like someone had over-inflated her with air. She took 7 doses out of 14. Twenty one doses total for round one!

    Last Tuesday, her CT scan showed ALL THE TUMORS SHRINKING!! 3 months ago she was given 6 months to a year. Now there is hope!! We are still scheduled for 2 more rounds (14 doses each) but I can tell you...it is worth it. Life is precious; my heart is filled with joy knowing my young, beautiful wife has a fighting chance.

    Always keep a positive attitude. When times are tough (and they will be) remember the treatment is not forever. You will recover from the ILL 2. Cancer is not a death sentence, just a different road.

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