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September 25, 2014 at 6:51 pm #22178
I’m new to this forum and we live in the UK. We’ve just found out today that my dad’s melanoma has spread to his lungs and is under his left arm – even though he had all his nodes removed 3 months ago. My dad even though mentioned on a few occasions refused to be told the prognosis of how long he may have as we want to concentrate on each day and have hope. We have a few treatment options – chemo then ipilimumab, just ipilimumab , trial of trametinib or pazopanib with paclitaxel or a trial of MEK162? Any help regarding these treatments would be greatly appreciated.
Thank youSeptember 25, 2014 at 11:02 pm #65462Catherine PooleKeymaster
Where is your dad being seen? Sounds as if he is Braf negative, right? Your goal should be to eventually get him on the immunotherapy, PD1 which so far has the best response rate.. To get that, he may be required to do IPI (Yervoy) first. I wouldn’t bother too much with chemo, as it is relatively ineffective for melanoma. The MEK drugs alone may give a good response, but not a lot of evidence on that. let us know if we can help you possibly get another opinion too. Your dad is lucky to have you looking out for him.September 26, 2014 at 5:49 am #65463
Thank you Catherine. This forum has been a wonderful source of support and advice. PD-1 was not mentioned and I’m not sure we can get it in the UK. We are being treated at the QE Birmingham which from experience are fantastic. Do you know if it is there is any evidence of PAzopanib or Tramentinib working as there doesn’t seem to be much information on this. Would the chemo before yervoy enhance yervoys effectiveness?
Thank you again TinaSeptember 26, 2014 at 11:50 am #65464
I am also a stage 4 malignant melanoma patient in UK ( I suspect as old, or older, than your Dad). I am with Southampton . When a number of mets were found internally and 2 small brain ones my Consultant referred me to Dr Larkin / Prof Gore at the Marsden in London, as they had access to a PD1 / Ipilumimab trial. I was not eligible due to a prior issue, so, back at Southampton I underwent a 4 course Ipi treatment ending in Jan this year, coupled with Gamma Knife treatment of the brain mets at the Cromwell (All under NHS). CT and MRI in April showed total remission. I Have had more scans last week and await the results. BTW I am BRAF wild. A few points re your Dad I would suggest: 1. If BRAF mutant then MEK treatment usually comes first. 2. If he has several Met sites internally, inoperable by surgery, I would try to get on the IPI / PD1 trial, as, unlike USA, PD1 is not yet approved by NICE. Failing that I would get on with Ipi treatment a.s .a p.. 3. Has he had a brain MRI? Regrettably in UK this is sometimes not done without symptoms but up to 40% of metastatic melanoma patients get one or more. A CT scan is fine in torso but does not do enough “slices” for the brain . Well done with your support and good luck to your Dad.September 28, 2014 at 4:08 pm #65465
Further to your e mail. My recent scan result was good. NB NB I am not a doctor, but in my view in the UK the first thin to establish is if you are BRAF wild or mutant. If mutant the MEK is recommended first. The current “gold standard” in UK, approved for “appropriate” patients with advance muti sited inoperable melanoma is Yervoy (Ipi). It is, like PD1, designed to boost the patients immune system to fight the metastatic melanoma. The % of people who are effectively treated varies, but some say it is about 15 – 20%. In my case, so far, it has worked – my latest scans were clear (Treated with 4 doses ending in Jan 2014, clear scans in April and September.)
If PD1 were available, fine, but it is not yet here in UK as a routine medicine. If your Dad , after BRAF testing, is offered Yervoy, I would take it.September 28, 2014 at 4:19 pm #65466
It’s wonderful to hear positive stories and so pleased your scan results are good. We have a meeting on Tuesday so will hear the BRAF results. My feeling is Yervoy 1st and ASAP but if BRAF mutant then the only option is the clinical trial. The only other choice is if we have Chemo 1st before the Yervoy as our consultant thinks this May assist in the yervoy working – he will only do 2 rounds of chemo and then see if it works – not seen much evidence of chemo doing much.
Thank you again TinaSeptember 28, 2014 at 5:12 pm #65467
I would press hard for Yervoy if the consultant will go along with it Looking well helps as they assess patients on an overall basis . I was PS 1 (ie ok mentally and physically). In UK the NICE guidelines take this into account when deciding if a patient will be allowed NHS funded treatment and Yervoy costs, typically, £80, 000,for a 4 dose course. I do urge you to try to get a head MRI to discount brain mets. These are present in up to 40% of Grade 4 met patients. I was given a 6 months prognosis last October but here I am a year later with a better outlook of, as yet, unknown duration. I wish your Dad the best of luck next week.October 2, 2014 at 2:56 pm #65468Jolly_SimonParticipant
If braf positive you should be able to get him on zelboraf also known as venuranenfib as I am taking it and based in Kent uk.
Best of luck
SimonOctober 2, 2014 at 3:55 pm #65469
Thanks Simon – we now have the results of the BRAF and dad is being treated next week with ipilimumab.
We are just praying it works and the side effects are not to bad but one day at a time.
I wish you all the best in your treatment.
Thank you again – TinaOctober 2, 2014 at 6:18 pm #65470
I am glad your Dad is going on Ipi – I assume 4 doses 3 weeks apart? I was lucky this time last year and fortunately had few side effects except some arthritis. I assume he was BRAF wild? It is the best treatment generally available in UK; I saw my Consultant today and he said only 20 so far have been on PD1 apart from those in trials. I believe the cost here is £160,000 plus for PD1 so only a very few will get it yet. I have no detectable melanoma in torso now, and am on a 6 months review. My brain mets are gone so I am fighting the DVLA who have taken my licence for 2 years from my Gamma Knife treatment last December. Do not be too worried about side effects – the Doctors always have to be cautious . Do let him have best wishes and let us hope it works as well for him as for me.October 2, 2014 at 6:36 pm #65471
Thank you so much for your kind wishes. I presume he is BRAF wild as the consultant said this was the treatment for him – either that or a trial. Yes a treatment every 3 weeks for 4 cycles. My dad is very nervous regarding the side effects but we have told him we will face them if/when they come. We have been making sure he stays active, eats healthly and stays positive. I think the difficult part will be getting him to rest after the treatment as he’s an avid DIY’er.
Your positive words at this means a great deal to us as a family as at times we felt there was no hope.
Hoping you continue to have good results and get your driving licence back
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