by Twiddles on Mon Nov 29, 2010 04:19 AM
Marcy, I'm SOOOO happy to hear Orville is home and doing well. What an answer to prayer! I'm so happy to hear the good reports. I've been praying for you! The updates are wonderful. Unfortunately, Dave didn't qualify to try IL-2, but I'm sure if anyone else reads this it will surely be helpful to them. You've done a great job keeping track of everything and sharing it with others.
by jepco on Tue Nov 30, 2010 10:39 PM
I've been following your postings. I was diagnosed with Stage IV RCC 7 weeks ago. I am 63 with mets in both lungs. This sure does turn your life upside down. I am having the kidney removed on Dec. 10th. I have a local oncologist but also saw a kidney cancer specialist at UNC in Chapel Hill NC. Based on my age and because I am basically health (except for having kidney cancer) she is recommending IL-2 which I am seriously considering and your postings are very informative. I will have a CT-scan in February to see where things stand and then will have to decide whether to go the IL-2 route or go on Sutent. How soon after his diagnosis did your husband start the IL-2? Did they talk about Sutent? Please keep the postings coming and let us know how your husband is doing. Celebrate Christmas... I already put up a tree!
by BobMar272 on Tue Nov 30, 2010 10:55 PM
I hope this finds you well. I had IL2 at Duke and it was scheduled 6 weeks after my surgury. It was not the easiest thing to deal with but doable as I talked to Marcy about. Give it a shot,maybe it will give you the cure I know you are looking for. If you need any help--or someone to come see you in the hospital just yell--I live in NC and love to talk to peoplewhen they may need it.
by jepco on Wed Dec 01, 2010 06:40 PM
When did you have IL-2 at Duke and how did it go? Are you getting any treatment now? NC here as well.
by BobMar272 on Wed Dec 01, 2010 11:49 PM
I had IL2 Nov of 2008==I got 13 months of stable progress till Jan 09==then went on axitinib till present. The nice thing about IL2 is when it works even partially there is no more drugs to take until it progresses. If you will do your treatment at Duke, you will be in the penthouse floor and the people are second to none. I still go visit them every time I am at Duke for scans.
by jepco on Thu Dec 02, 2010 12:50 AM
My doctor at UNC Chapel Hill is recommending to go to Dr. Amin in Charlotte. He's suppose to be one of the top in the country. It's hard trying to make the right decisions. You just have to trust your doctors and get educated as best you can I guess. Can't wait for this thing to be removed next week.
by MarcyS on Fri Dec 03, 2010 04:52 PM
He was diagnosed in mid-Aug. Surgery Sept 1 and IL-s started November 9. Yes, Sutent was discussed. We discussed 4 avenues of treatment . . . . Sutent, IL-2, Torisel and Avastin along with interferon. We chose to start with the IL-2 for 2 reasons. 1.) While the chances of it working are lower, the affects if it does work are greater. 2.) Dr Tykodi has experienced that once you start on another form of treatment the IL-2 most cases won't work and he does not recomend it at that point. Other treatment does something so that the body can tolerate much fewer doses of IL-2.
Dr. T wanted him to start the IL-2 a couple of weeks sooner but he had his annual elk hunting trip planned. He looks forward to this all year and I think he benefitted more from the trip than having done the IL-2 sooner. The elk don't usually worry . . . the trip is really more male bonding.
Best of luck to you on the 10th. Bummer, right before Christmas! It's on my calendar. Will say extra prayers for you that day!
P.S. Thanks for the advice about Christmas!
by jepco on Fri Dec 03, 2010 08:55 PM
Hooray for the Elk. Hope they are safe and sound.
How long after this first round of IL-2 will they do a CT-scan and possible second round?
We're thinking the same thing. Sounds like you have one shot at the IL-2 so why not go for it. It does appear to work some of the time. I'm waiting to here from my insurance company to see if it's covered.
Don't mind so much about the surgery. Told the nurses during my pre-op tests that I watched the operation on youtube. Pretty interesting. My husband thinks I'm nutsbut at least I know now what to expect.
by angelsgirl2002 on Wed Dec 08, 2010 04:03 PM
I will be sure to pray for you. My mom just completed her third week of IL-2, and let me tell you, it's not easy, but honestly, if it kills those darn tumors, I believe it will be truly worth it.
You get weaker with each treatment, but my mom had a month break in-between week 2 and week 3, which really helped.
I will keep you in my prayers, and please feel free to message me if you have any specific questions about possible side-effects and such. I am in college so I have not been there for my mom's treatment, but I speak to both she and my dad every day, so I think I have a pretty good idea from that and my visits throughout the semester.
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