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April 23, 2013 at 6:12 pm #21213
Hi all new member here. My husband is stage 4 and scheduled to begin IL2 treatment next week in Nashville at Vanderbilt. He has numerous tumors most subcutaneous and lymph nodes. Had surgery, radiation and Yervoy trial at stage IIIC but developed hypophysitis and could not continue. Is now on replacement steroids, etc. for autoimmune disorder. Cancer came back after yervoy 10 mos. later this March. Not eligible for anti PD1 trial. BRAF/NRAS negative. I know about the IL2 and the severity of the treatment. Although it is an older treatment, doesn’t it have the potential to “cure” 5% of patients with overall long-term survival? Can anyone recommend any other options? Thank you.April 23, 2013 at 7:32 pm #60217Catherine PooleKeymaster I would check with Dr. Infante’s program in Nashville at Sarah Cannon REsearch Institute. He has some very interesting trials your husband might qualify for. There is one that doesn’t require BRAF positive status that we’ve mentioned here before. IL2 is a very hard treatment with considerable toxicity and requires hospitalization often in intensive care. True, there are a few, 6%, who do get a durable response. First do some research at Sarah Cannon before you decide on the IL2. Hope this is helpful to you.April 24, 2013 at 12:58 am #60218 Catherine, Thank you for your response and expertise. I did briefly look at trials on the Sarah Cannon website and saw the same BMS antiPD1 that he is not eligible for at Vandy. I suppose it can’t hurt to make a phone call. However, the the doctors at Vandy told us they would not suggest the IL2 if they knew there were other options at other institutions, especially locally, that could potentially be of benefit without the toxic side effects. We aksed about Merck antiPD1 and were told he was not eligible for that either. Am I too trusting and naive? When he was diagnosed stage 4 this March, we were told he could be expected to live a year without any treatment. We feel like time is of the essence.April 24, 2013 at 1:27 pm #60219Catherine PooleKeymaster I would still call Sarah Cannon and see what they may have available. There are many new trials and it is hard to keep up with them without calling first hand.April 24, 2013 at 3:21 pm #60220AnonymousGuest Absolutely check out the folks at Sarah Cannon.
They were the most interactive of the centers we dealt with. Dr. Infante spent over an hour one on one with us going through the various trials, explaining the theory behind the treatments and recommendations for a treatment path. It was obvious he and his staff had also taken a good long look at the records, slides and notes our oncologist sent prior to us meeting them. We signed releases on the spot for a few trials to get a jump on the screening processes. A wonderful staff.
JeffApril 25, 2013 at 1:46 pm #60221
IL2 is scheduled for next Thursday, 5/2. Ultimately, we feel there is not enough time to put a 2nd opinion in place without having to put off treatment. I can’t add any doubt that this is a good decision and need to stand by it 100%.
Regarding the BMS and Merck trials, we were told that my husband was not eligible due to the time lapse from his last does of Yervoy May 2012 (NED stage 3c at the time) to when his cancer progressed March 2013 (stage 4). Apparently it needed to be within 6 mos. time vs. his 10 mos. They tried to appeal to no avail. Frustrating.April 25, 2013 at 11:39 pm #60222LucyGParticipant
I have done 4 weeks of IL2. I agree with you, if the Doctors are offering, go for it. I had melanoma in 1971 on my back. On April 2012, Melanoma returned to my chest, above my right breast. Since 2012, I had the chest melanoma removed, right lung node was removed, and melanoma also found in my brain, which was removed, and radiation was just done about 5 weeks ago. I still have melanoma in my spleen and lymph nodes. So far the IL2 seems to have kept the other melanoma’s from growing. I had 2 weeks of IL2 in December 2012 and 2 weeks in April 2013. My last week of IL2 was the worse, as I could only do 3 treatments that week, and I went home on my 3rd day. It’s not fun, and you feel very bad, but once you get home and rest for a week or more, you start feeling better. I will have another CT scan on my body in a couple of weeks to see what the spleen looks like. Good luck with the IL2. I had mine done in Charlottesville, Va @ UVA by Dr Weiss.
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