Forum Replies Created
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 ! As for the question re Japan – I thought the japanese had approved the Nivo Anti PD1 under their pharma ONO ?? 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 !
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.July 5, 2014 at 10:03 pm in reply to: Two months on Zelboraf, side effects and what to do next #64928 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 bestJuly 2, 2014 at 9:11 am in reply to: intermittent treatment of dabrafenib and tetrametinib #64843
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 bestJuly 1, 2014 at 8:19 pm in reply to: intermittent treatment of dabrafenib and tetrametinib #64841
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 ? 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 ? This has been a great Blog Bettina – thanks – informative and so much easier than trawling through !May 19, 2014 at 6:43 am in reply to: neoplastic cell are HMB45 positive and S-100 negative #64391 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.
Great Ninni – I have posted your enquiry there but if you are already there you can continue the thread 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 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. 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 !
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 .