Forum Replies Created

Viewing 15 posts - 16 through 30 (of 108 total)
  • Author
    Posts
  • in reply to: For Rick1981: Ipi then PD1 or Pd1 and IPI combo? #65174
    Gilly
    Participant

    I know heart rhythm changes can be an uncommon side effect of Vem/zelboraf but I don’t know about Dab/Tram – get it checked !

    in reply to: Accessing anti-PD1 therapy in europe #65087
    Gilly
    Participant

    As for the question re Japan – I thought the japanese had approved the Nivo Anti PD1 under their pharma ONO ??

    http://www.fiercebiotech.com/story/anti-pd-1-cancer-star-nivolumab-wins-worlds-first-regulatory-approval/2014-07-07

    in reply to: Accessing anti-PD1 therapy in europe #65086
    Gilly
    Participant

    Bonjour,

    Mon mari est patient stade 4 a l’IGR – ils ont l’anti PD1 de Merck et l’essai de Nivo (l’anti PD1 de BMS) – mais je crois que l’essaie Nivo est deja remplie. Caroline Robert est tres forte en Melanome – mais il y a aussi J-J Grob a Marseille et Dr Mortier a Lille – pour l’anti PD1 de Merck il faut avoir eu l’Ipilimumab – Bravo pour votre soin de votre patiente ! C’est assez rare parmi des medecins traitant d’avoir ceci !

    Gilly

    in reply to: A little bump (literal) on the road #65193
    Gilly
    Participant

    My husband has also had 2 new MM lesions – he has been on zelboraf for 18 months – they were not sure if the new lesions were in transit mets as they were within 10cm of his wide-excised primary – but at biopsy they were the “same” melanoma – since he continues to respond in his other mets they are currently thinking they are Zelboraf induced secondaries – this is nearly as common as BCC’s in long term Zelboraf users according to our. Derm.He has since had 3cm wide excision.

    Gilly
    Participant

    Hi

    so sorry for your husbands diagnosis – my husband is on month 17 on Vem/Zelboraf – the expanded access of the Merck Anti PD1 is in Europe – you need to fail Ipi and then you should be able to get it at one of the Spanish research centres – make sure you are at a centre of excellence – you should be given advice on the side effects of all the drugs he is taking and how to manage the side effects – make sure you get answers you understand – it is important to have a team who knows the latest drug treatment strategies as there is a lot happening in Europe at the moment, and the sequence of treatment is important for you. All the best

    in reply to: intermittent treatment of dabrafenib and tetrametinib #64843
    Gilly
    Participant

    that is interesting, Jualonso, because – in France with the expanded access the failure of a Braf is not necessary (if you have the Braf mutation) but Ipi is still first line – I might push the specialist a bit – I think it is always best to be at a specialist centre for Melanoma especially if you have one fairly close.

    All the best

    in reply to: intermittent treatment of dabrafenib and tetrametinib #64841
    Gilly
    Participant

    Jualonso – we are in France – officially you need to fail Ipi to get the Merck anti pD1 – the EMA will be deciding at the end of the year on whether it can be a treatment line – my husband is just failing zelboraf/Vem and we were hoping to avoid Ipi and go straight onto the anti Pd1 – but it looks unlikely – my husband was stage 3c in the axilla too – and now has chest mets and new in transit sub cutaneous mets – where are you treated ?

    in reply to: Catherine: Denying Ipi #64704
    Gilly
    Participant

    I can’t understand why they are still insisting on failing Ipi when the ASCO presentations suggested little difference between Ipi and Ipi naive patients ? Is it to limit the numbers while there are Merck supply issues ?

    in reply to: Best ASCO Blog! By Bettina #64612
    Gilly
    Participant

    This has been a great Blog Bettina – thanks – informative and so much easier than trawling through !

    in reply to: neoplastic cell are HMB45 positive and S-100 negative #64391
    Gilly
    Participant

    Hi Russian,

    Sorry for your diagnosis – my husband had his first distant metastases on his left hip (sub cutaneous) having had his primary on the right side of his chest near the axilla – strange place to metastasize I thought – he also had mediastinal mets too – I would have thought with low tumour burden you would be ideal for Ipi/yervoy as it would give you time to try it and then use it as a failure criteria for Anti pd1 if it doesnt work for you – did they test your hip met or biopsy for the Braf mutation ? then you could have zelboraf or one of the Dab/Tram combinations – its awful to be stage 4 but you are in a relatively good place with no visceral mets and hopefully you can get on the new line of treatments before your melanoma spreads too far . All the best.

    in reply to: Ipi adverse #64381
    Gilly
    Participant

    Great Ninni – I have posted your enquiry there but if you are already there you can continue the thread

    in reply to: Clinical Trial Patient Rights #64100
    Gilly
    Participant

    very true Bettina – I hope Ninni can get unblinded – its vital ! Are Micab doing anything with the Paris melanoma conference ? Is it only for clinicians ? Thanks

    in reply to: Ipi adverse #64378
    Gilly
    Participant

    Hi Ninni – sorry for your problems – it is not at all uncommon on Ipi to have the awful rash and fever and fatigue – the poor liver figures are also a known side effect . Can you find out, now that you are off the trial, whether you had the dicarbazine or the Anti Pd1 ? – in which case you can maybe get the antipD1 on its own ? My husband was on an Ipi double blind trial 2011 to 2012 and we are just getting the results from BMS as to what arm he was on to see if we can go straight onto Anti pD1 or if we have to re-do Ipi. My husband had no symptoms on Ipi so I think we were on the placebo. Bettina is the person for European trials advice – we live in France. On the Melanomamates forum on Facebook there are many on Ipi – you have to apply as it is a closed group.

    in reply to: In transit mets after zelboraf #64365
    Gilly
    Participant

    Thanks Catherine – is unblinding such a headache after 2 years – my team seem to feel it will be a battle – but we would really rather not do Ipi (and prolong starting the anti Pd1) if it isn’t necessary !

    Thanks

    in reply to: Zelboraf, 1 month results #64348
    Gilly
    Participant

    Hi Mikhail – its very difficult to say – as you mention there is a variation in expert opinion about this – I will say that if Zelboraf works it does work very fast – whereas Ipi has quite a delay – I know many people who have had Zelboraf to halt the spread and growth and to reduce the mets and then go on to Ipi later – yes there is a period to flush out the zelboraf but for me the speed at which Zelboraf can work was very useful – we were lucky that it continued to work for ages and gave us time to wait for the new up and coming treatments to come on line. Make sure you are discussing all this with a Melanoma specialist not just and ordinary doctor ! All the best .

Viewing 15 posts - 16 through 30 (of 108 total)