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April 14, 2013 at 8:19 pm #21190
Hi all, not posted in a while as not much to say. I was diagnosed Stage IV in January 2011, With mets to left lung and abdomen, I had 3 cycles of dacarbazine, then did 9 months on the gsk MEK Inhibitor, then 5-6 months on Vemurafenib/zelboraf under expanded access, then completed a course of IPi in December, just had my 2nd post ipi scan and am not a responder, both tumour sites show growth, but no new mets. I’m in the UK, does anyone know of any further options for me??? I am not eligible for the BMS anti pd1 trial here as they want a max of 2 prior treatments and obviously I have had 4. Hs anyone managed to get Anti pd1 on compassionate grounds? I have been referred for an appointment for a phase I trial, but have no details on what it is, even in terms of class of drug but my research is pointing to an Immunocore drug IMCGp100, has anyone done this trial or have any info? I’m fit and well, with 2 young children, who I’m keen to stick around for, for as long as possible. Thanks for any pointers.April 15, 2013 at 11:44 am #60073 I’ve reached out to some of my contacts in the UK for some suggestions. There is the TIL at Manchester and also maybe the BRAF/MEK combo by GSK. Maybe the PD1 can be appealed? I’ve heard the doctors at Oxford are quite good. I will keep on the look out for you.April 15, 2013 at 4:42 pm #60074 Thanks Catherine, any tips happily received. I know my options are getting limited but I also know I haven’t tried pd1 or the braf/Mek combo or TILS and I’m willing to try anything/ everything given the chance. Do you know if appealing for pd1, can I do this myself or should it come through my oncologist? Thank you.April 15, 2013 at 5:49 pm #60075 For the Merck PD1 you could travel to Europe: Switzerland, Germany, Italy, etc. It has the crossover feature. Let me check about prior therapies.April 15, 2013 at 10:55 pm #60076 My sources tell me you can do the PD1 by Merck. As I mentioned there are no trials in the UK, but several across Europe and the Netherlands. You do not have to worry about prior therapies I am assured. If you’d like to email me privatedly and tell me which countries you are interested in, I would be happy to send you the contact info.April 16, 2013 at 8:05 pm #60077lak1Participant I m in the UK too. I actually have ocular melanoma. However I do know that R Hawkins in Chrisities is going to do a trial of TIL low dose IL2 versus high dose in skin melanoma. I m not sure whether the trial is open yet if not open you have to get indivudual funding request approved by your PCT or you have to pay. £50,000 ball park figure – you may need to add in excision of the lesion for extraction of TIL as well.
Hawkins is very approachable and has a team I suggest you ring the team at Christies asap There is a need to be fairly fit heart and lungs they test your heart and lungs to see if you fit. If you had pre exising heart disease or lung disease that might rule you out.
email me on
firstname.lastname@example.orgApril 17, 2013 at 6:15 am #60078 Thanks Lesley (I know you from ‘mates I believe) I’ll add this to my lines of research , though I don’t have 50k to hand right now…April 28, 2013 at 6:53 am #60079DianapParticipant Hi there,
Just wondering how long a late responder is; as in how many months until you see a response?
It is lovely to hear you feel well, I was asking that question yesterday, as no one wants to tempt fate but at the moment, I am on my second ippy, although sick this time, I have put that down to over eating (6 meals plus a day) and my body warning me to slow up and eat properly. Going back to feeling well, I won’t be having any scans until the course of ippy is finished, and I wonder what decision I would make if the tumours were the same size and not bothering me…not sure that can happen? but at some stage I would like to give my body a rest from scans and drugs, perhaps I am being stupid, as I know what a devious disease I am battling, perhaps this would confuse it.
As you are in the UK how far is Addenbrookes, there is a new drug being tested on a trial basis, once again I wouldn’t know if you were sutiable. The clinic is run Pippa Corrie and I was given a blood test on arrival, a quick email from her told me I wasn’t suitable, However, knowing so quickly stops at lot of worrying and stress.
I hope you find another route soon that you are happy with,
DianaApril 28, 2013 at 10:02 am #60080lak1Participant
I first had Ipi in 2010. We thought I was a non responder as I progressed. I had SIRT ( internal radiation) to the liver mets – then 70 weeks after the first dose of ipi my anti tumour antibodies rose. I went on to have the remainng two sub 3 mm lesions ablated and was disease free till Feb 2013. (Was very poorly with ablation with post ablation syndrome maybe that was because of an immue response) .
Dont think anyone knows whether I truly responded or not but the course of my disease was altered and I have followed an unusual pattern for my rare uveal melanoma.
Just had 3 rd dose of Ipi again side effects different this time no diarrhoea just went straight to dilation of colon and fever. Starting with artharlgias now last time they were apparent from the second dose. Liver behaving itself so far.April 29, 2013 at 5:00 pm #60081
Hey, thanks for your responses, the more inpit the better. Today I had an appointment in Oxford to discuss the possibility of a Phase I trial for another immunotherapy, similar to ipi but different, similarly I had blood taken to test for HLA 2 for which I need to be positive to be included in this trial, so we will wait and see. They also spoke to me about the BMS pd1 trial, which I told them I have already been told I am not eligible for because of my 4 prior treatments, they were going to try and argue the case with BMS that the MEKi and BRAFi could count as 1 treatment because they are so similar a class of drug. Good luck with that one I thought, BMS do not seem to be very flexible in their criteria and my other oncologist has already received a categoric no to the quest for pd1 on compassionate grounds, but I’m happy for anyone to keep banging on that door, it may open eventually… I am also going to have a discussion about the possibilities of ablation and surgery, I haven’t had that conversation in over 2 years so I think its worth revisiting. I’m also in discussion with Merck in France in reference to their pd1 trial. So options are out there. I’ll keep you all posted as things progress.May 1, 2013 at 5:26 am #60082DianapParticipant Sara,
I just read this again -IMCCP100 trial. I am sure I was tested for this by Pippa Corrie at Addenbrookes, it is just a blood test. She then emailed me within a week, if I remember right, to say I wasn’t a candidate.
It is a new immunotherapy, on trial, which Pippa Corrie, was saying is looking to be better than Ippy. Please contact her and fingers crossed my memory serves me right, as I did look for the email and info on this but couldn’t lay my hands on it.
I will send you a private message to make sure you read this, as it is easy not to log in at this worrying stage.
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