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Viewing 15 posts - 31 through 45 (of 108 total)
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  • in reply to: TWO QUESTIONS – ONE STUPID #64376
    Gilly
    Participant

    Definitely not a stupid question ! My husband was diagnosed stage 4 in Dec 2012 – he had mediastinal/lung and a sub Q met on his hip – he has had 16 months of Zelboraf and has just found a few in transit new mets so will probably come off Zel at the end of the month (after confirmation of PET scan) I agree with Alicia there is a bit of evidence that suggests that having brain mets and success on Zel is slightly less pronounced but that the sister drug Dabrafenib has had some success on brain mets so who knows – i think targeted brain radiation and sometimes WBR can sort out the brain Mets leaving the Zel to attack the rest of the tumours. All the best.

    in reply to: Zelboraf, 1 month results #64346
    Gilly
    Participant

    Hi again Mikhail,

    My husband has always been treated at IGR (since 2008) – we are French tax payers but UK citizens so it is going to be difficult if you are non EU – I guess costly too – My understanding is that they are expecting the Anti Pd1 ‘s to be available off trial in Europe in 2015, but for now its only on trial and this means you have to fail Ipi as part of the protocol. I cant advise what you should choose, but I would say Zelboraf has not got completely rid of my husbands initial tumours, but it did significantly reduce them and prevent new mets – 16 months is considered exceptional – jmmm’s husbands results are truly wonderful – i would think having Ipi is a good second option – it can work long term and it is only 4 doses and it may become a treatment criteria for future Russian trials of Anti Pd1 and you will have done it – its difficult to know when to stop Zelboraf (we were tempted to stop early as research at IGR has shown the antiPd1 to be SLIGHTLY more successful if taken before progression on Zelboraf) – but its only a slight difference and perhaps not statistically significant. In hind sight I am glad we continued on Zelboraf. At the moment through out Europe I thing the standard is taking Ipi/Yervoy after Zel has failed – some take Ipi first too. All the best.

    in reply to: Zelboraf, 1 month results #64342
    Gilly
    Participant

    Hi Mikhail – my husband had fast but not total reductions in tumour burden on zelboraf – there are people in uk and France on the Merck anti pd1 – but you have to fail Ipi first – my husband is being treated at the IGR in Paris – he has been having zelboraf for 16 months but has just had some new mets – he will have the anti pd1 if he has failed Ipi/Yervoy (he may have already failed Ipi since he was on a trial in 2012 but we don’t know if he was Yervoy/Ipi or placebo) – there are places in uk where people are having it .all the best.

    in reply to: Anal Melonoma Treatment in India #63450
    Gilly
    Participant

    So sorry to hear about this Prakash – he is definitely stage 4 if he has distant Metastases – is there any access to Zelboraf in India or even Ipi – the former acts faster and since there are no brain mets as yet – I dont know anything about trials in India but you can try : http://www.ctri.nic.in/‎ – I know the trials often dont accept mucosal melanoma patients but it doesnt hurt to ask. All the best for you and your father – keep fighting for him.

    in reply to: ugent help please!!!! #62174
    Gilly
    Participant

    So very sorry Catleya – I hope you have support around you from those who love you and Michael – RIP Michael.

    in reply to: List of recruiting trials for IPI/PD1(BMS) sequential/combo #62533
    Gilly
    Participant

    Hi Catherine thanks for that – does previous Zelboraf/Vem mean this is not allowed ? Do you have the trial number for the european openings ?

    Thanks

    in reply to: Lymph Nodes in Face #62541
    Gilly
    Participant

    Hi Josh – sorry for your worries – there are a few lymph nodes in your cheek along from your mouth and then round to near your ear – more in the jaw line – they are in chains so keep an eye out for any more – at least there they are relatively easy to feel – I hope they have got rid of all that was lurking. All the best.

    in reply to: 2 Years after TIL #62511
    Gilly
    Participant

    Congratulations Hein – keep going – hope you are living life to the full !

    in reply to: feet swell #62209
    Gilly
    Participant

    Hi Tamie – my husband is on month 7 of Zelboraf- feet swelling and hardening/thickining of the skin is quite common – the swelling started easing at about 2 months but the thickening of the soles of his feet and the sore feet continues – get some urea cream to reverse the effects

    all the best

    in reply to: Zelboraf treatment #61995
    Gilly
    Participant

    Hi Beth – my hubby had 30% shrinkage in the first 4-5 months – the last two months the tumours seem to be stable – hopefully this will last a while ! All the best – my hubby found that walking helped his joints and sore feet bizarrly .

    in reply to: Zelboraf treatment #61993
    Gilly
    Participant

    welcome Beth – sorry you are having such a bad time and welcome to the forum – My husband is on month 7 of Zelboraf – the side effects often ease in the first month or two – if the have played with the dosage already and reduced to 6 a day you will hopefully have an easing of symptoms. Unfortunately everyone is different both in what they can tolerate and in their side effect reactions. My husband had painful feet (like walking on pebbles) and joint pains and muscle pains that changes place and intensity. He has had a few warts and one carcenoma – he has lost all his body hair and most of his head hair – if you can bear it i think you will find it gets easier. All the best.

    in reply to: Zelboraf treatment #61988
    Gilly
    Participant

    Hi Tamie – welcome to the forum – my husband has been on Zelboraf for 7 months – he has had temperature, rashes , lost all body hair, very sun sensitive, joint pains and thickening of skin on feet and hands – he also has diarrhea sometimes and changes in taste – he has remained of 8 pills a day because his side effects were bearable – they will play around with the dosage until your husband can tolerate his side effects – they tend to ease a bit at 4-8 weeks. All the best – be very careful in the sun – it only takes a few minutes without sun protection before you burn !

    in reply to: Checking in on all! #61952
    Gilly
    Participant

    Hi Catherine – thanks for checking up on us all ! I am still reeling from Pati’s death as she was a rock for us Europeans. My hubby’s 7 month scan is tomorrow on Zelboraf – the last scan showed no reduction but no growth (having had a few months of reduction)- I am concerned that this time we will see growth as we are at 7 month average point – in your experience will a small amount of regrowth result in stopping Zel ? I know its pre-empting results but its best to be prepared – of course scanxiety means that i worry about his persistant cough and slight anaemia ! Thanks for your watchfulness !

    in reply to: Altered taste #61900
    Gilly
    Participant

    Zelboraf certainly changes taste a good deal but I hadnt heard of it for Ipi – all the best.

    in reply to: Today we lost Pati #61636
    Gilly
    Participant

    Strength and love to you Catherine – I know you were close xxx

Viewing 15 posts - 31 through 45 (of 108 total)