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May 9, 2014 at 8:43 pm #21961lak1Participant
Does anyone know of any evidence for the 3 rd induction of ipilimumab in patients who have had durable responses on the2 previous inductions each lasting for more than 12 months?
Do any of the medical panel have any evidence of this or clinical expereince that they might be prepared to disclose for a funding application ?
LesleyMay 9, 2014 at 8:55 pm #64319JonathanParticipant
I don’t know the answer to your question, except from personal experience. After a good “partial response” to Ipi, the second and third cycles were progressively less effective for me. I had the sense that this was the common pattern, but I may be mistaken.
Hope you are doing well,
JonathanMay 10, 2014 at 4:15 am #64320lak1Participant
I am very well in myself just back from 2 weeks SCUBA in Maldives. I still run, However it is clear that i m slowly progressing. I have had liver ablation for sub 5mm lesions in liver on 2 occaisinos since December.
I applied to the Cancer drug fund in the NHS to fund more ipi for me- they can only do this for exceptional pateints – they denied that uveal melanoma was a seperate disease to skin melanoma and thus said i did not have a rare disease.
They said that as there was no evidence for retretment a 3 rd time there was no reason to do it. I just feel that i would like to do something proir to letting my disease run away and escape. Glad you are on anti pd 1 has your neuropathies improved for stopping the other treatment?
I would like anti pd 1 too but it will not be in UK till autumn at the earliest and I dont trust my disease not to have blown by then.May 10, 2014 at 11:37 am #64321Catherine PooleKeymaster
Good to hear from and happy to hear you are having some fun! I don’t believe there is any evidence of consequent IPI inductions working that well for folks. Jonathan is on of the few patients I know of that has had some success with this. PD1 does have a higher response rate than IPI and really would be a good path for you to follow. The AEP is available here to global folks. The side effect profile is much reduced too compared with IPI.May 10, 2014 at 7:29 pm #64322Nancy DowdingParticipant
Hello Lesley & Jonathan,
Jonathan, I’m so happy you were able to get anti-pd1. Hope this is your “magic bullet”.
Lesley, I’m glad to see you are “living life” and feeling well. As you may remember, I too have ocular melanoma and have had 2 courses of Ipi, the last being June, 2012. I am stable and my oncologist stated the last time I saw her, that there is always Ipi since I’ve done so well on it. BUT, my wish would be anti-pd1 and IF it is FDA approved by the time I would need it I would like to do a combo of Ipi & anti-pd1. What are your thoughts on this?
Another question….I’m scheduled for an incisional hernia repair via laproscopy, but since I am overweight they are having me do an 800 cal. liquid diet for 4 wks. I’m wondering if this is okay as I’ve heard you don’t want to diet while battling cancer, BUT I am stable and not on any treatment at this time. Thoughts anyone??
NanMay 12, 2014 at 12:00 am #64323JonathanParticipant
I miss the scuba and am envious. And my neuropathy hasn’t gotten better yet, unfortunately. Given the high rate of apparent success of anti-pdI, Catherine’s suggestion of making a few trips across the pond to get it early might be worth it. As I wrote in another thread, read the Hamid article in the NEJM and it appears 70-80% of patients get some lasting benefit, in terms of years, with no subsequent progression. Hard to beat. Especially if the NHS is correct and we’re dealing with the same disease….
I doubt weight loss can make that much difference. I think they really worry when you start losing 5 pounds or more a week – breaking down all sorts of tissues in the process – catabolism vs metabolism.
JonathanMay 12, 2014 at 9:46 am #64324tcellParticipant
Try this thread on MPIP:
Though not for uveal melanoma but at least something…
Have you tried to search pubmed yet?
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