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June 27, 2014 at 6:54 pm #22062
I have made a few posts in the stage 2 forum but I was recently upgraded to stage 3b. Here’s a brief history:
When I was pregnant I discovered that a mole had grown out of a flat discolouration in my left ear. The discouloration had been there for several years and I had also been to a dermatologist about it who said there was nothing to worry about. The moment I noticed the lump I went straight to my skin clinic who agreed that it should be removed, but it didn’t look like melanoma. I was given a surgery appointment for 3 months later. Zoom forward 3 months (22 weeks pregnant) the mole was removed and came back as nevoid melanoma, 1.8mm, Clark level 4, Mitosis 3. They haven’t recognised it because it was a rare nevoid type that doesn’t present as a typical melanoma. Anyway, I had a WLE and my Sentinel Lymph Node biospy came back negative.
Fast forward a bit over 2 years and I felt a lump in my ear just above where the melanoma had been. It was in the worst possible crevice and I only managed to find it with the help of two mirrors. A small dark growth. I had it removed and it was again nevoid melanoma, 1.2mm, Clark Level 4, mitosis 6. I’ve since had more removed which contained another satellite, and now another WLE (a few days ago) and am waiting on results. My recent Pet CT showed up negative, so hopefully we can deal with this recurrence and see no further spread.
➡ 💡My dilemma? … I am an Australian living in Germany with two children (almost 2 and 5) with no family and not much support. The medical system is good but I feel that I need my family in order to get better. I am totally and utterly entrenched here, have been here for 12 years. It is very daunting to think of making a move to Australia. But I am not happy here. So I have to go through this huge stress and I am very worried about getting into a program in Australia immediately. I’m worried about a recurrence and getting stuck here. I’m worried that the wonderful relationship I have built up with my doctors here (they are great!) will be lost and I will suffer disadvantages as a nobody in Australia. How can I organise this? What do I need to organise in advance? I will be moving to Bendigo (just near Melbourne) and need to set up some regular scans, blood tests, appointments etc. immediately. Does anyone have any contacts or hints? I dread finding a lump or worse just before making the move and then having to make my way back into the health system and having delayed treatment … it is SO SCARY! Most of all I have no time or energy to do anything apart from looking after my two kids and working. Fact is, if I’m going to get better, I need to go. If I’m going to get sick, I need to go. I just want the best treatment possible throughout the process.
Sorry for the long post … looking forward to replies!June 28, 2014 at 4:52 pm #64807
I’m sure you might hear from some folks in Australia, but please look at our resources for Australia: Click on Australia. http://melanomainternational.org/web-resources/global-resources/#1
I’ve heard great things about Peter McCallum. See if you can set up something in advance.June 29, 2014 at 10:30 am #64808
Yes I have also heard about Peter Mccallum. Are there any Aussies on here who can offer any info regarding Clinics in Melbourne?June 29, 2014 at 12:03 pm #64809 In the resource list on our website is the Patients Australia group, try reaching out to them as well or try to new post asking for Australian referrals..June 30, 2014 at 3:53 pm #64810martiParticipant Dont know how well-informed you are with the present health-care system ( health-insurances) in Australia. Just a thought: If you look up the Peter Mccallum, they have a contactperson for melanoma. Give them a call at their time and see what you have to do in advance.
Just another thought: make sure you have hard copies of all your PA reports, letters, Pet scan and so on, and keep them, just hand-out copies. Dont rely on copies they offer to send.
Understand your position so well, having been just “upgraded” from stage 1A to 3B after 5 years as well. Maybe its the position (ear) of the melanoma that has put us on higher risk ??
Hope you will find your way to your family, and hope you will never have to face melanoma again.
MartiAugust 2, 2014 at 6:36 pm #64811
hi, I am currently in the US and looking for melanoma care in Europe – Germany is on my list. Could you please tell me what center you have been getting treatment in Germany? And any thoughts about melanoma treatment in Europe vs other regions.
DarrenAugust 3, 2014 at 12:51 pm #64812
Are you moving to Europe or thinking the therapy is better there? If you are moving there, please take a look at our list of global sites,
Otherwise please know if you are not a citizen in the European country you many not have access to treatment or it may come at some cost. The new therapies are actually in the U.S. much sooner than reaching Europe. Let us know how we can help.August 3, 2014 at 6:59 pm #64813
Thanks Catherine. I have been contacting centers on the list of global resources on your site, trying to determine what exactly they offer in melanoma treatment. I’ve also contacted others such as Arcadia Clinic in Germany – I’m interested in their type of treatment, especially since there seems to be no beneficial treatments in the US for my stage IIIc. What clinics in Europe have you seen people have success with? Thanks much.August 3, 2014 at 7:31 pm #64814 I do think IPI and PD1 will eventually be available for stage IIIC and you might see if your doctor might prescribe off label when the PD1 is approved.
I can’t say you will find it different in Europe, as I mentioned they get their approvals for new drugs months after US does.
Are you currently NED (no evidence of disease?) If so, then that limits you further. Watching and waiting is viable as long as you stay vigilant.August 3, 2014 at 8:21 pm #64815
I had node dissection 3 months ago, not had a scan since. Blood levels all good. My focus on Europe is actually more on the natural treatments for cancer in general, vs treatments for melanoma, which I’m familiar with. I’m not really interested in drug treatments and really want to find a clinic anywhere that has proven success using natural compounds by IV, hyperthermia, and other natural treatments. Also looking to find a good supplement protocol for melanoma. Am amazed how difficult it has been to make progress on these 2 fronts and I’d really appreciate your advice. thanksAugust 4, 2014 at 7:08 am #64816bettinParticipant Good morning,
before moving, I’d make sure that that doesn’t lead to worse access to the latest treatments further down the line because unfortunately, there are currently huge disparities world-wide when it comes to access.
As Catherine already said, the US tends to be the first one to approve new drugs- also based on the fact that they are usually submitted there first. Huge market paying any price asked for, you get the motivation! So if you are in the US with a good insurance cover, that’s a good place to be.
Europe doesn’t have breakthrough designation, so they require more data in order to approve a drug (although they are now working on other ways to get drugs to patients faster), so that takes longer. Also, Europeans don’t pay the asking price, there are now nearly in every country price negotiations which usually mean that the same drugs end up being much cheaper in Europe than in the US and even different countries within the EU pay different prices. Differential pricing!
Downside: in some countries, patients don’t have access during that haggling process (Germany actually has a law that patients need to get access to a drug within a short delay after its approval, even before they agreed on a price, so there you would get it once it’s EMA-approved).
The upside: if you are covered by the national healthcare system- and you have to make sure of that- they will usually pay for your treatments, co-pay is usually minimal and not existence-threatening for Western European countries. Often, there are lists which type of treatments are covered- and which aren’t. Often, alternative therapies aren’t. Though in Germany, some of them still might!
However, in Eastern Europe and some countries with HTA systems like the UK, although a drug is approved and you have a covering health care system, you still won’t get the drug- due to its cost. The UK is notorious for it- so far, there was trouble for every new Melanoma drug coming out. In the end and after some major advocacy efforts, they do pay for it (at a price not disclosed but certainly *way* below what everyone else is paying) but in the meantime, patients don’t have access to the drugs.
As for trials, the really interesting Phase 1s tend to run in the US only, the later Phases are also accessible in other parts of the world. With drugs that offer a real chance of long-term survival in very close reach, that’s important.
And as already said, make sure you have hard-copies of all your results and scans and only ever had out copies of that….Peter was treated between 3 different countries and that was only possible because we had his medical file.
Wishing you all the best,
BettinaAugust 4, 2014 at 5:29 pm #64817
Thanks Bettina for that great overview. I’m not necessarily planning to move to Europe, just want to try natural therapies there because with stage IIIc and NED, my goal is to target remaining cancer cells (that may or may not be present). I would love to get your opinion on cancer clinics such as Arcadia Clinic in Germany, or any that offer natural treatments for cancer, not necessarily melanoma.
DarrenAugust 8, 2014 at 4:35 pm #64818
Hello Darren, I’m the original poster and am still living in Germany. Tübingen is the place to be when it comes to Melanoma but that’s not really what you’re after. For a more “natural” approach I have heard from others about the Biomed clinic http://www.biomedklinik.de/en/… the site is also in englishAugust 8, 2014 at 6:55 pm #64819 Thanks very much for that info, I was hoping for your reply. I’d really like to know if there is any particular reasons you’ve not chosen natural treatments like those at BioMed, or what you’ve heard about such treatments.
DarrenAugust 9, 2014 at 11:49 am #64820
I hope you will get answers from others, but wanted to share my point of view. I keep an open mind to alternative therapies but only if they’ve been proven in a large study and randomized. People with serious illness get desperate for answers when there aren’t any sure solutions. And a whole industry crops up to take advantage. For instance, the only supplement that I truly have seen valuable evidence about taking, is Vitamin D. It indeed ups your immune system function. Aerobic exercise and activity also boosts the the immune system. But these other supplements, whether “all natural” which can mean just about anything, just aren’t proven. So for now, I tend to believe what is proven with science backed evidence. I think you will find some interesting information on alternative medicine here:
Don’t forget that by taking good care of your mind and body through healthy living is probably the best thing you can do!
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