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May 26, 2013 at 8:27 pm #21314
Greetings to all. First post but I have been an appreciative reader since January. Pretty typical start….small spot on lower left leg that was biopsied 12-15. Got “the call” on the 19th. It was initially set at 2.3 mm. Following the WLE & SNB in February I had 2/2 positive nodes and 3.7 mm. They did not get the margins so went back for another WLE & the CLND. There were 3/9 positive nodes and the new margins weren’t successful. So now I’m 3C with an unresectable leg with an increasing number of satellites and a “hot” groin. Long way around my question….seems the only reasonable direction I can take is the “il – 12 with electroporation ” trial. It will be offered via Dr. Daud at UCSF. Odds are slim, I know. But has anyone been in this trial? Opinions and comments? We’re doing fine and carry a good attitude. What else can you do? Thanks and good health to all. ClintMay 28, 2013 at 12:26 pm #60926 Being 3C unresectable allows you access to many of the new therapies and trials for stage IV. Are you BRAF neg/or positive? You could apply to a number of trials or be prescribed either zelboraf or Yervoy. But first you should know if you are BRAF positive or not. Let us know..we can help.May 28, 2013 at 2:42 pm #60927 The response is appreciated. The BRAF was checked early on and I’m negative – not a candidate for associated trials. Neglected to mention that I’m male, 65 and quality of life is paramount. Thanks, Catherine. You’ve put together quite a service with MIF.May 29, 2013 at 3:09 pm #60928 I would ask about Yervoy (approved) or a PD1 trial. Where do you live?May 29, 2013 at 10:28 pm #60929 Thank you. I’m DSQ from the Yervoy due to some previous intestinal problems. I’m in Northern California but have declined the Pd-1 due to there being a placebo contingent. Have notified the oncologist that I’m going with the il-12/electrporation trial. Should get my first series in about two weeks. If there is an interest I’d be happy to keep MIF fully informed as to the process. This is one very strange place to be in life. I sincerely wish the very best to all those involved. ClintJune 4, 2013 at 12:42 am #60930 Hi Clint,
You are right, it is a strange place to be in life. I am also stage 3C for almost 7 yrs now. Mine started on my big toe and spread to my groin. A matted palpable cluster. I had my toe amputated and a deep groin LND. My primary was almost 12mm. Ulcerated, vascular invasion, mitosis of 3. Extra capsular extension. I recurred the day before my 3 yr mark in my shin. It was 2 lymph nodes consumed with melanoma. Fortunately, they were able to remove that surgically as well. Besides the surgery I have gone with the watch and wait approach. Not always for everyone but it seems to be working for me.
I’m sorry you are so limited with your choices, but I want to wish you ther very best. Keep us posted.
Shirley ZJune 4, 2013 at 5:31 am #60931
Thank you, Shirley. You’re a good model and the support is appreciated. ClintJune 5, 2013 at 1:45 am #60932NYKarenParticipant Hi Clint,
I am stage 3C too. I usually post on the Stage IV page as most of my treatments have been those that stage IV’ers are familiar with. By the way, there is a Merck PD1 trial which is just dose-escalation of the PD1 drug. There is no chemo or placebo, and I am trying to get into it.
Best of luck in the trial you’re starting–please let us know how it goes.
KarenJune 6, 2013 at 11:40 pm #60933
Greetings. I met yesterday at UCSF with the Trials Coordinator and the administering oncologist, Dr. Daud. Discussed fully the rules of the game and signed 3 pounds of waivers. I’m accepted and ready to start after one more PET / CT next week. The procedures take place on days 1, 5 & 8 beginning Monday, 6-17. They don’t waste any time. To those contemplating trials, some expenses are picked up by the sponsor but not all. Very frequent condition checks. Will update as we go forward. ClintJune 7, 2013 at 1:52 pm #60934 Good luck and please keep us posted. Remember if things don’t go well you can drop out of a clinical trial. But your posts will educate others, and we thank you for that.June 8, 2013 at 8:21 pm #60935 Good Luck to you Clint. Will be looking forward to your updates.
Shirley ZJune 14, 2013 at 3:21 am #60936
My scans from Tuesday showed no other involved organs, just continued warmth in the leg and groin. So the trial is on. Today’s surprise came when they asked if I would start tomorrow. Part of the reason is that this trial is being covered by ABC News and they wanted to interview me subsequent to the procedure. They are trying to find a pharmacist to mix the concoction in time. But, evidently the interview will happen either way. If at all possible I’ll show my appreciation to all at MIF. Might be fun….or I might end up on the editor’s floor. We’ll see. ClintJune 14, 2013 at 4:00 am #60937 Hi Clint,
Good news on the scans. Good Luck with the trial. I will be watching for
the celebrity. Make sure you let us know when it airs
Shirley zJune 19, 2013 at 11:43 pm #60938
Greetings. Had my first il – 12 electroporation trial procedure on Monday, 6-17. They did provide some pain meds both orally and via I.V. One at a time they selected 4 tumors on my lower left leg, injected the il – 12 then a 1300 volt shock to each. This “electroporation” then opens, however briefly, the membranes encapsulating the cells. The tool looks like an electric toothbrush with 6 (l think) 1″ pins at the head. Where location allowed – no bone – the pins went in more deeply. This allows the il – 12 to be more effeciently absorbed. 1300 volts most certainly clears the sinuses. After the 4th round you’re very glad to be done. It could be worse in that I spoke to one participant that had it on his neck, just below the ear. Absolutely no pain after the procedure. Some bleeding for special effects is all. Forgot to mention that a punch biopsy was taken from the largest subject prior to the procedure for later comparison. Dr. Daud was excellent and calmly explained each step. My next round is tomorrow, 6-20. If there’s an interest I’ll follow up again. Be well. Clint (carvin1)June 21, 2013 at 3:17 pm #60939 We received the second of three procedures yesterday, 6-20. This one was filmed for the previously mentioned ABC7 – TV documentary. This time there was definately more discomfort. As the procedure is done in as close to the same spots as before, the skin was quite sensitive and the muscles sore. There was also some lingering stinging that went into the evening. This morning finds it pretty norma less some puffiness at the lesion sites. Monday is the third and final effort. More tests will be done and I’ll follow with the news. Everyone please enjoy your weekend. Clint (carvin1)
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