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Viewing 15 posts - 76 through 90 (of 108 total)
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  • in reply to: TIL accounts #58539
    Gilly
    Participant

    I hope you got some positive advice Pati – have a lovely time skiing !

    in reply to: Brents anti pd 1 update #58874
    Gilly
    Participant

    Hi Sharon – we are here for you – are you getting the pain under control – it is SO important that he be confortable – no one can focus when the pain is priority – sorry that he cant do any MEK at Moffat but the radiation hopefully will zap the worst of the tumours – I hope you have more than one hand to hold – did they get his spine cemented ? I am sure the others will be along soon with other trial locations (I am not in the States so I don’t know) – I hope you find a compassionate use at MD Anderson – dont give up but fight for him especially his pain relief – sending love and strength …

    in reply to: Brents anti pd 1 update #58865
    Gilly
    Participant

    So sorry for your worries and fears – I hope they get his pain under control asap in the first case and then you can bear waiting for the scan results – any possibility of Tils ? Is his pain on his back ? Hang in there – everyone is crossing fingers for you both.

    in reply to: Stage 3 and Interferon #58586
    Gilly
    Participant

    Hi Belinda

    I know the dilema you are in – it has to be your choice – my husband was considered high risk or recurrence – we were offered Interferon after his wide excision but declined – he had nodal recurrences a year later -but we are still SO glad not to have done interferon – if you can get on a schedule of regular scans and checks and remain proactive seeing what your options are if you do progress then that is also a great option – my hubby is stage 4 now but I am so grateful that he had a full year feeling well and filling his days with us – it is our choice but we didn’t want a treatment that would have worse side effects than his then quality of life – all the best in your decision xx

    in reply to: Overwhelmed But Determined #58838
    Gilly
    Participant

    Welcome Aaron – I hope things go well for your Dad – we know the feeling – the total absorption with Melanoma and its Treatment – the worry – the lack of a feeling of being in control – your father is lucky to have 2 proactive sons – its good to be in the know especially as effective treatment options have to be sought – they often dont fall into your lap – it sounds like your Dad’s oncologist is well on side though. My hubby is stage 4 with several inoperable mets and he is now on a trial taking Zelboraf. My advice is talk about it to your brother and dad – dont let it be an elephant in the Room – we have 4 kids and we talk about it and sometimes laugh about it (it seems odd but it does make things easier) especially when there are drug side effects or other undignified tests. THis site is great for up to date advice and a sympathetic ear. Take care and keep looking after your dad ! All the best

    Gilly

    in reply to: Please send your good thoughts to Jonathan #58735
    Gilly
    Participant

    Thinking of you Jonathan.

    in reply to: TIL accounts #58525
    Gilly
    Participant

    Hi Pati – there is a blog on the mymalignantmelanoma.com under Sarah’s story which concerns Pete’s Tils – she is mostly on the Melanoma facebook forum but she is such a huge help there, that i’m sure she wouldnt mind giving you some views. I will PM her and she may come and reply. All the best to all of you xx

    in reply to: After Zelboraf, what are the trials? How to get in? #57857
    Gilly
    Participant

    Very sorry for your loss Danuta – your mother is no longer suffering – I hope you have support in your sadness .

    in reply to: Interesting study about Zelboraf came out today #58479
    Gilly
    Participant

    Thanks for that Catherine – i guess it helps to explain why some of the reinductions to Zelboraf show a stronger result than the first time around – although it seems to be the stopping it rather than the restarting it – I wonder how long people should be on it to allow the melanoma cells to start “using” the therapy before you deprive them of it – i guess the 7 month recurrence period gives us an idea – I know its too early to read into this but its very interesting …

    in reply to: Average time to respond if PD1 versus BRAF/MEK? #58390
    Gilly
    Participant

    Tils would be a great thing for you to try Pati – Personalized treatment – hope it comes off for you – and Amsterdam is a much more do-able distance .

    in reply to: Average time to respond if PD1 versus BRAF/MEK? #58387
    Gilly
    Participant

    Hi -Happy New Year everyone – Nice to hear from the core cohort members again ! Glad that you are sounding positive Pati, and that your LDH is back down and fingers crossed that you can get the compassion word understood for the Anti pd1 locally – we only have 4 hours travelling for Zelboraf trial but j’en ai marre deja ! Sorry that Jonathan is suffering such fatigue on the Peg Interferon/Ipi but I hope it does some good. I hope you get onto the Braf/Mek or Anti Pd that you want ,Sylvia , good luck on wednesday. I hope Celeste, you keep going NED indefinitely.All the best this year to all warriors.

    in reply to: Happy New Year! #58344
    Gilly
    Participant

    Boy Erin – you’ve really packed it in to 2012 – I hope you can do as much once the anti pd1 kicks in and that it lets you live as full a life as last year – I particularly liked the lovely dogs – dont they just make your day brighter !!

    in reply to: Zelboraf = painful #58227
    Gilly
    Participant

    Hi

    My husband is in his third week of Zelboraf – he has rashes that come and go, aching wrists, ankles, knees – tender feet and hands and pins and needles sensations – his joints get quite painful but he finds that exercise eases the pain (esp cycling – as this takes the weight bearing off his tender feet to a degree) – he refuses to take any pain killers but we were told that any of the standard asprin/paracetamol painkillers were fine – I think Catherine has suggested some other medication that works for more severe pain if you search the forum.

    All the best.

    in reply to: TIL with Yervoy / Philadelphia Inquirer blog article #58136
    Gilly
    Participant

    well done all of you thus far – we will have fingers crossed for the TILS trasfer in Jan – have a great xmas with your little family

    in reply to: calling all those who have re-induced with vemura/dabra #58120
    Gilly
    Participant

    Thanks Pati – Thats useful to know – my hubby is just starting the first lot of Zelboraf – I hope Quentin’s way will help many – hoping you have a great Xmas en famille and lots of treatment success in 2013 with the re-induction and the MEK1- love and thoughts – Gilly xx

Viewing 15 posts - 76 through 90 (of 108 total)