by KellyC on Sat May 26, 2012 02:06 PM
My husband is stage 1V with mets to sternum, and two lesions at spine T-3 and L-5. He did two rounds of Sutent and cancer spread. He is on his 3rd week of afinitor. It seems that the people who post have good results with IL-2. Anybody have cancer spread after IL-2?
by snydergirl on Sat May 26, 2012 08:09 PM
My Husband did his 1st round of IL-2, he finished 4/23, just had his scans last tuesday, it hasn't spread, but it hasn't gone away either, he's stable. Scans were scheduled for 8 weeks.
by KellyC on Sun May 27, 2012 12:26 AM
Did your husband try other drugs before IL-2?
by snydergirl on Sun May 27, 2012 02:21 AM
IL-2 was his first choice, he said if that was his only chance for a cure, that was where he was startingh, diagnosed stage IV in November, 10cm tumor left kidney, nephrectomy on 12/29/11, appears to have mets in lymph nodes, he has "low volume of disease", prior to IL-2 he was relatively healthy, considering he just had major surgery, the IL-2 was tough, he's a month out and still not himself, down 30 lbs, we are in a holding pattern right now, we don't want to start any VEGF or MTOR treatments until we absolutely have to, would prefer to stick with immunotherapy and hope it works, honestly, would try IL-2 again if it progresses.
by mrbuck on Sun May 27, 2012 05:02 AM
I am curious as to why you made the decision not to go the standard route of VEGF or MTOR drugs. Why did you think that the IL2 was the best route?
by winer on Mon May 28, 2012 06:10 AM
My husband was diagnosed 4-09. Started on sutent which worked the longest, affinitor (which about killed him)..Sept 2011 did IL-2 treament, 2 rounds the cancer spread to lungs and liver. Tried nexavar which did not work. Now on votrient. Started on 4 pills, down to 3 pills, took a week off, started back on 2 pills, but the scan this April show marked improvement. He could only tolerate for 2 weeks, then off a week. We will have to see if it works with that small of dosage and a break in between.
by snydergirl on Mon May 28, 2012 12:55 PM
IL-2 has the only chance of long term remission, the VEGF and MTOR's only work for a certain amount of time, and there's been documentation of aggresive progression of disease after treatment fails. We are following the trials of additional immunotherapies for the same reasons
by Twiddles on Tue May 29, 2012 02:24 PM
Hi, I thought a long time about whether to respond to this, because I don't want to scare or discourage anybody, but I think people should know: do not take the treatment with IL-2 lightly. It is serious, harsh treatment and you need to be in an ICU if you decide to take this treatment. My husband, Dave, died during IL-2 treatment. He was 67 years old. He had stage IV RCC and had good success with Torisel and Sutent, lived for nearly 3 years after diagnosis (the doctor estimated he had 6 months to live when he was first diagnosed). When Sutent stopped working, he tried Afinitor, but the cancer was spreading like wildfire. He went into the hospital to try IL-2, but at our facility they do the treatment on an oncology unit, not in ICU. I really think if he had been in ICU he would have been more carefully monitored and the treatment would have been stopped when he began to get into serious trouble. Next Saturday, June 2, will be the first anniversary of his death. It has been a difficult year for me.
My husband was a fighter, and IL-2 offered hope of a cure, and I know if he had it all to do over again, he would still want to go through the IL-2 treatment. Just go into it knowing there are serious complications and be informed, and make sure to be in ICU if you have this treatment!
by MarcyS on Tue May 29, 2012 05:02 PM
I completely agree with Twiddles. IL-2 should only be administered in ICU and at a hospital with great knowledge of it and it's side effects. It's tough and not to be taken lightly. I would do it only at a cancer center that specializes in it.
We chose IL-2 as our 1st line treatment as our oncologist told us that if you treat with another type of drug 1st, it will prevent the IL-2 from working. He explained why that happens but I don't remember exactly.
Many people don't have success with IL-2. We were one of the lucky ones and are so very grateful for that success.
by winer on Tue May 29, 2012 09:23 PM
Twiddles, I am so sorry about your husband,my husband is 68. I also thought IL2 was very tough but we did it it Portland, Dr. Brendan Curti, he was excellent. The whole floor is only devoted to IL-2 treatment. You get one on one or more if needed. The care couldn't have been better.
I mispoke before, it was only one round with two treatments with a break in between. When they scanned him and it had spread we about went into shock.
I would still recomment it , because it is the only chance for a cure, at this time.
I am also amazed at how positive everyone seems to be and I think it's wonderful. Because this journey is so hard.
Take Care of yourself.
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