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March 20, 2013 at 6:07 pm #21123
This is my first post and I’m really hoping for some advice. My brother was diagnosed with Stage IV Melanoma at the end of January. The primary source is most likely from a mole on his leg but because it had regressed they cannot be 100% sure of this. One of the Brain tumours was removed within 3 days of diagnosis as it was causing very severe symptoms all of which are now stopped thankfully. He has had 3 weeks of Whole Brain Radiotherapy which he finished yesterday and tolerated very well. Tiredness has only just kicked in in the last couple of days. Himself and his wife met with the Medical Oncologist today and were told that’s it for now, no more scans for 3 months and no chemo, no stereotactic radiotherpy, no immunotherpy or targeted therapy, nothing just basically wait now to see what happens next. Is this normal procedure or should they be looking for a second opinion. We live in Ireland and Melanoma specialists are non existant from what we can see. If anyone knows of a melanoma specialist in Ireland or England, can you please pass on the details, thanks.It just doesnt seem satisfactory considering how serious it is to just sit and wait now. Any advice and recommendations would be greatly appreciated.March 20, 2013 at 6:17 pm #59718 I am sorry to hear of your situation. You might take a look at our global sources, there are many listed for the U.K. and just a couple of resources for Ireland: http://www.melanomainternational.org/resources/global_resource.html
Normally, oncologists wait to see if the radiation has done its job before they will start on a therapy. Clinical trials are pretty restrictive about brain mets as well. But do contact some of those on the list and see what is available. Is he BRAF negative? I believe the UK finally approved Zelboraf and Yervoy as options, but not positive.
I hope you will hear from others in that area of the world too.March 20, 2013 at 6:34 pm #59719
Catherine Thank you so much for your speedy reply. Yes he is BRAF positive. Both Zelboraf and Yervoy were the two options I had thought would be suggested for him. When in general would these be started. Is there a time limit after the radiotherapy or can they be started at any stage. He is only 43 with 3 young sons.March 20, 2013 at 7:58 pm #59720 The Glaxo braf/mek might also be a good choice. Again, access might be an issue. But it is worthwhile to shop around..(Glaxo is UK based)March 20, 2013 at 8:14 pm #59721 Thanks again so much for your reply. Will look into the Glaxo option.March 20, 2013 at 8:18 pm #59722meeshka6059Participant I am so sorry to hear your news. Sending you many blessings.
My father was also diagnosed stage IV this past October with brain mets. He was given WBR and then Zelboraf for the tumors in the rest of his body. They told us that Zelboraf does not cross the blood brain barrier, unfortunately. My father did not tolerate the Zel very well and we wound up taking him off of it.
I think it would be wise to be very proactive and seek a second opinion. Gather as much information as you can. In the meantime I hope your brother fares well and improves.
With love and light.
MichelleMarch 20, 2013 at 9:11 pm #59723
Thank you so much for taking the time to post a reply and for your kindness.
I’m very sorry to hear about your father.
Please excuse my ignorance but as my brother currently only has brain mets
And no visible evidence yet of mets anywhere else in his body does that rule
out him having zelboraf if it doesn’t cross the blood brain barrier.
I’m just trying to see what his options are currently as we’re not happy with the
way the hospital left things today.
Many thanks againMarch 21, 2013 at 6:54 pm #59724buffcodyParticipant
My own relatively uninformed take on this is that your doctor is making a good decision. You are right about zelboraf not being appropriate for right now with no tumors. Even ipi makes more sense when something shows up. It also may not be standard practice in Ireland at this stage. 3 months, as long as it will include a brain MRi then, makes sense. This period of sensible waiting make it possible for you not to be rushed in finding a melanoma specialist to get a second opinion or further help from. I don’t think a second opinion on whether you should be doing something systemic in the next month is necessary. Take a deep breath. Take some time.March 21, 2013 at 9:23 pm #59725 Buffcody perhaps you are right. Myself and his wife are both meeting with the oncologist next week to try to get a better understanding of why they are doing no more for now. I was speaking to another oncologist on the phone today and she seemed to think that he would be suitable for the ipi as you suggested. So hopefully we will get some answers that help soon. Many thanks for your post.March 29, 2013 at 2:13 pm #59726Johnfdc7Participant Nicky
See link below for the Irish Melanoma forum website that has a list of professional members – this might give you some pointers.
Paul Donnellan in UCHG is the chairman and is a melanoma expert – there are probably others in Ireland too. I am unfortunately not aware of any melanoma specialist centres like those in the US but I think the knowledge and expertise is there – just not all conveniently in one centre.March 29, 2013 at 2:35 pm #59727
John, thanks for posting. I was unfamiliar, but would like to collaborate with this Irish Forum.
I think it may help Nikki too find a specialist.March 30, 2013 at 8:38 am #59728
John thank you so much for your reply. Ill check it out now. Haven’t been online for a couple of days as my brother had some bad side effects after the radiotheraphy this week. His memory seemed to go couldn’t tell his sons apart couldn’t remember his date of birth. Struggled with basic coordination and was very disorientated. We brought him to the hospital on Tuesday and they increased his steroids from 1mg to 16mg for 5 days. He has basically just slept ever since apart from an hour or so each day. Not as confused but definitely still struggling to speak. It’s just heartbreaking to see him. Hopefully the steroids will help the edema. We’re going to see his current medical oncologist on Wednesday. We met with radiotherapy oncologist last Tuesday but she couldn’t answer the majority of the questions we had.
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