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    My husband has been in a PD-1 trial at Sloan since October. Unfortunately, he has mets on his spine that are causing pain. One of those lesions is “minimally invasive”. Of course,it needs immediate remediation. He is going to have radiation in the next week to deal with two lesions. As you know that eliminates him from the trial. He has had what the doctors call a “mixed response” to the therapy. Some things smaller others a bit larger. Overall a 50% reduction. They are going to retest his tissue sample for mutations. Based on the original testing, that was not done at Sloan, he does not have the BRAF mutation. They are talking about chemo if he does not have a mutation that might qualify him for upcoming trials. Obviously chemo has not been effective for most melanoma patients, but the hope is that since his immune system is “geared up” he may have a better response. Does anyone have any experience with chemo after ippi or pd-1? Just so many unanswered questions at this time. Thanks!!



    So sorry to hear the two drugs have not worked for your husband, in fact that is an understatement, I am on ippy at the moment and cannot even think of it not working.

    I am not much use to you but I do know what it is like to suffer with back pain, which can make you feel so ill as quite often the pain is referred and will affect your stomach and other regions. I had a back operation many years ago a spinal fusion 7 hours, but it got me back on my feet. They only things that helped were having a pillow between your knees, currently doing that myself due to a nerve being trapped again. Obviously regular pain relief, with an anti inflamtory included, some strong pain killers, codiene, if he can tolerate them every four hours, make sure you have a stomach lining drug first.

    Heat come sometimes help, hot water bottle, tens machine,

    Sorry I am not being of much use to you, but I wish you both well and hope somethings works soon for your husband.

    Best wishes



    Thanks Dianap for your response. He had back surgery in December of this past year for a disc problem. Happy to say that resolved the issue. I know the upcoming radiation will relieve the pain he is now experiencing as well as protecting his spine from further damage. He uses all the things you suggested and the increased pain medications have helped. Just waiting for the radiation to work it’s magic.

    Catherine Poole

    I would definitely get the radiation for the spine mets, it usually works quite well at eliminating that. For pain, you might consider asking about tramadol instead of the usual narcotic derivatives. It is a good alternative. As for what’s next, there are a lot of interesting trials going on. For the BRAF negative, the ADC trials are interesting. The Genentech product is one that is being tried in melanoma patients. It is targeted therapy and seems to have minimal side effects. If he is BRAF positive, then more options open up. Let us know how things are going and don’t forget to take care of you.



    I did a quick search on the Board and couldn’t find anything about ADC? Could you add a little detail? Always interested in BRAF-negative possibilities.

    Catherine Poole

    We did have a discussion on this, but it is easier for me to pass on what one patient I am working with told me: “The clinical trial ID is NCT01522664 and the drug is Genentech DEDN6526A. This is an antibody drug conjugate (ADC) with the antibody attracted to an ETBR receptor on the surface of melanoma cells. After the drug attaches itself to the melanoma cell, it then internalizes itself to the cell and releases a chemo drug (MMAE). Some refer to ADC drugs as “smart bombs”. Genentech has ADC trials in process for several cancers. They have gotten FDA approval a couple of months ago for HER2 positive breast cancer. From the informal conversations with nurses and oncologists, they seemed pleased with the results from the few patients that are in the DEDN6526A trial. It appears many are responding to the drug and few are having any significant side effects.”

    How are you doing? Good to hear from you Frank.


    The Genentech ADC is, I believe, the same one the Rachel qualified for last year at Sarah Cannon in Nashville. They spent quite a bit of time explaining it to us and the one below is a perfect fit with what they told us. Here’s what else they told us:

    1. The receptor is a very common receptor for several cancers including melanoma but very uncommon in healthy cells. It circulates in the blood but only goes after the bad stuff. Hence the “smart bomb” or targeted chemo labels. Rachel tested positive for the receptor.

    2. The attached chemo is extremely toxic, in fact quite lethal if given as a conventional chemo. If it gets into the cancer cell, it will more than likely kill it, either directly, or during cell division.

    3. The antibody does not cross the blood-brain barrier so active brain mets would need to be treated seperately and is an exclusion for the trial.

    4. I got the impression the early response rates were in the range of 30-35% and the drug was well tollerated, especially compared to chemo.

    5. Sarah Cannon seemed to be particularly excited about its possible use as an adjuvent therapy as it circulates freely in the bloodstream for some time and seeks out a specific cancer receptor. They also thought it might work very well in combination with IPI (in particular) and PD-1 as its pathway to the tumor is very different, does not depress the immune system the way chemo does and may generate widespread antigen markers as tumor cells die off.

    Unfortunately, at the time, Rachel had to be 12 weeks out from IPI, which she had just completed, to get into the trial, so we went with the MSK PD1 trial that was sequenced with IPI (though she got excluded from that at the last minute for brain mets).

    Hope this helps.


    Catherine Poole

    Yes, this sounds very promising. They are still accruing at Sarah Cannon I heard and looking to expand the trial. So good news, especially for those who are BRAF neg. Thanks Jeff.


    Catherine and Jeff,

    Thanks for the explanation. I’m feeling quite good these days. Hope to feel not that much worse after my outpatient surgery today at the University of Michigan to extract the slowly growing tumor from deep in my left buttock. I won’t know if I have an active tumor in the brain till late May after the next MRI. Next big swim meet on the schedule is the National Senior Olympics in Cleveland in late July. Craniotomy in June would put a damper on that one.


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