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December 11, 2013 at 12:46 pm #21707
Does anyone have any experience with this treatment ?December 11, 2013 at 10:33 pm #63195Catherine PooleKeymaster There was much discussion of this at the recent Society for Melanoma Research meeting, I will look for any printed proceedings. There was reported synergism by Jedd Wolchok at Sloan with a patient, so I do think there is some promise with this.December 12, 2013 at 4:18 am #63196Celeste MorrisParticipant Data from: Combined Ipi and radiotherapy for metastatic melanoma , recently published by Menzel, Abendroth, et al, Center for Melanoma Research and Treatment, San Francisco, CA Melanoma patients treated with Ipi (3mg/kg, 3-4 doses every 6 months) and subsequent radiotherapy to 1-3 non-cranial lesions were identified. 8 patients had progressive disease and 2 had stable disease at radiotherapy initiation. At last follow-up, 2 patients had complete responses, 4 had partial responses, 1 had stable disease, and 3 had progressive disease. Among 5 patients evaluated for an abscopal effect, 2 had progressive disease on lesions out of field, 1 had stable disease on lesons out of field, and 2 evidenced an abscopal effect, with regression or clearance of non-irradiated lesions. Combined ipi and radiotherapy is a treatment option…with apparently little additive toxicity when…radiotherapy is employed. The abscopal effect is an increasingly common phenomenon observed in patients treated with this regimen.
For what it’s worth…cDecember 12, 2013 at 4:46 am #63197msue5Participant
How about both at same time?In late May I started Radiation to my neck(20 Treatments)after 2 ipi doses because Ipi caused massive swelling of neck nodes that were threatening my airway and esophagus and carotid artery.I finished Ipi and radiation about the same time. A Pet Scan at 4 wks showed mixed response. No nodes in neck lit up but there was 5 new areas of concern in my Rt Pelvis that were new. I hadn’t been scanned since March so we are hoping they were there before I started Ipi and actually were smaller. Will find out tomorrow with Pet scan. A right axillary node and rt groin node are barely palpable so either ipi or abscopal effect. Keeping my fingers crossed!
Mary SueDecember 13, 2013 at 5:11 am #63198
I hope that the abscopel effect kicks some serious cutaneous and otherwise general @ss and that in a short time you are feeling GREAT!
It seems like a potential treatment that combines beneficial ideas…..I certainly hope it helps you and me too!December 22, 2013 at 3:40 pm #63199
had pet scan that showed two of the nodules of concern, one near liver and one near aorta, have either gone silent( metabolic rate) or have shrunk very significantly. great news. going to have surgery on one remaining tumor near left side intestine wall. Concerned about not being able to get more ipi……
when plan was to irradiate tumor( now scheduled for surgery ) was told I would get Ipi follow up…now waiting to hear from oncologist if I can still get follow up Ipi…..
If I am viewed as NED…..can I still get Ipi?December 24, 2013 at 3:07 am #63200Celeste MorrisParticipant
I was waiting for someone with more expertise to reply to you…since I am no expert on ipi. But, hated to see you waiting! Ipi is on the market. It can be prescribed for you, no doubt. The question is whether your insurance company will pay for it once you are deemed NED. I am not saying it is not warranted. But…your insurance company may argue differently so as to avoid paying. Talk to your oncologist. And if it is something they think you should have, gird your loins and fight the insurance company in the streets!!! Perhaps others with have more specific experience. Yours, cJanuary 1, 2014 at 7:54 am #63201lak1Participant Couldn t you get a second opinion form J Wolchok he reportedly (from patients) interupts at dose 2 for radiation.
Hit it. I hope you have more news now
Lets hope for happiness and success in New year for you.
LesleyJanuary 7, 2014 at 6:46 am #63202ZelzooParticipant
Hi. I’m new to this forum. I was diagnosed with stage IV, no primary, poorly differentiated, mets everywhere; lungs, lymphs, adrenals, various abodominal random places, scalp, behind right ear, on choroid of back of eye, and 9 mets in brain. (all very small and not yet massed, but vascular). So, brain mets ousted me from PD1 trial and my doctor immediately started ipi then the next week we Cyber Knifed all nine brain lesions plus my eye. (a lot of table time, like 3 hours per session)
One week after that was ipi #2.
A few days later, I noticed that the rock hard ear turmor had shrunk and by the evening of the next day, my earlobe was completely flat, normal. There is the presence of the original small bump behind the lobe that is much smaller, so I am very cautious. But I also feel different in my body. My energy has increased and my affect is normal. I was flat, without smile or spark, especially when the extreme fatigue would hit.
Also, I have noticed that at the same time the ear tumor shrunk by a good 75%, I have new subcutaneous tumors on my scalp. Two are rock hard pinpoint type bumps, and four of them are round softer bumps. I don’t know what to make of that. So I have mixed changes going on.
We were very aware of the the interaction of steriotactic with ipi. Like so many melanoma patients, we are focused on the hope of the help to the brain with this combination so that we might stablize the brain mets for the required 30 days in order to get on board with a PD1 trial. But I wonder what our doctors will advise in light of this apparent shrinkage? Finish out the last two ipi infusions?
Has anyone experienced intense corkscrew type tingling as a subcutaneous mass was establishing itself? And then extreme pain as it grew? My scalp and ear tumors were like that. I couldn’t sleep on that side of my head when it going on. It subsides and then the tumor seems to go dormant. Some have started up after a quiet time. Really weird!
I’m so glad for a blog like this to interact with you all. I hope and pray for us all everyday!January 7, 2014 at 1:29 pm #63203Catherine PooleKeymaster
That does sound like a good response. I would imagine that your doctors would choose continue with the IPI dosage. I hope all continues in a great response for you. Thanks for posting your story here and let us know how things go for you.January 8, 2014 at 9:20 pm #63204dkmcParticipant HI
Don was a total responder to IPI the first time. Melanoma came back this summer but after surgery he was again NED. He did a second round of IPI this fall…no problems with insurance even though after surgery he was NED. Good luck, KarenJanuary 22, 2014 at 1:22 am #63205
This forum is a great resource of info and community!
After my second session of IL2 and a little surgery on the splenic flexure I am now NED.
I did Ipi low dose intermittent from 10-4-2012 till 8-5-2013 before doing the two rounds of IL2, one in Nov. 2013 and the second in December……now what to do next?????
they won’t give it to me until 6-9 months have gone by….and then they say ……..maybe
adjuvent clinical trials??? where……what……
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