Alternative medcine?? We are going into this blind, any and all help gratefully recieved.

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12/17/2012 3:24am
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Replies: 5

Hi there to everyone that may read this.

I am Renae and live in the South Island of New Zealand. I am married to Michael and we have 3 children ranging from 16 to 3.

A month ago Michael was diagnosed with metastatic melanoma. Stage 3.

2 weeks ago he had a level 3 auxillary node dissection. yuck.

When we were given his diagnosis when his histology and ct results were back (the day of my 33rd birthday) we were told quite clearly that there is nothing that can be done for us here in NZ. There are no trials running and the Doc also stated very clearly that radiation and chemo were of no help to us.

The primary has not been found,

The Doc removed 18 nodes and thought as she was doing it that they were all riddled as they were black.

However apparently they are all clear bar the one that we definately knew of, the tumour in it measured 5.5cm. Huge apparently. Looks revolting also!

The specialist found out that we were working out what day to head to Mexico or anywhere really to find some sort of treatment as there was nothing here to cling to and at our next appt (last wednesday) she said that because of the size of the thing we were allowed to try radiation. We have health insurance so atleast there will be no extreme wait or congestion in the process.

I am however having a real issue with this, why do we put ourselves through this when the chance of it doing any good are so small? There is noway (that I am aware of) of the docs being able to tell us if the radiation has achieved anything or not.

Is it worth it while the primary is there somewhere lurking??

I am really wanting to find out from anybody and everybody about any treatments. Conventional or otherwise. We will go anywhere and spend anything to fix Michael.

He is the love of my life and the best father to our children, I am not going to take this lying down. I will get Michael through this and win this fight.

I am aware that alternative is a bit airy fairy but maybe there is something in it?

We have no trials here in NZ available to us, apparently we could try one however when he is in the last months of his life category. Cheers that is verey beneficial NZ.

I hope that everyone has a very merry xmas and a fantastic new years!

We will be up our gully, sitting on our deck having a bbq and drinking a few speights beers. Doing all the things we shouldn't be really, very soon there will be no fun until Michael is all better!

Merry Xmas

Renae x

There has not been any successful alternative therapy for uveal melanoma. So I do not see it would be worth the effort to travel for alternative therapies.

I know someone who has responded to private treatment in Israel there tumour was also of unknown primary or possibly mucosal.

That pateint responde with shrinkage of his liver lesions to a cocktail of chemo and Interleukin2 high dose.

Each round of treatment cost about £9000 and there were other costs too.scans etc.

Can he not get Ipilimumab in New Zealand?

Hi there

I have not heard of that drug. We asked our specialist about any and all treatments or drugs that we could try and were told that there are no trials here for us etc.

I have started reading a book about alternative treatments.................i guess he will have to get the radiation. I am still against it however.

Gosh what a dilemma.

Are we talking cutaneous or ocular melanoma?

Keep Rowing!

Hi

We also live in New Zealand. My husband has stage 4 melanoma and is 58. Have you had braf testing to see if he is negative or positive for the mutation. My husband is negative and he has just finished his fourth infusion of ipilumamab.. Unfortunately it is not funded in NZ and has cost around $300,000 for the four infusions which,have to be administered privately.. If he had been positive for the braf mutation he would have been able to get. Zelboraf as part of a compassionate use programme. If your husband hasn't been tested he needs to be ASAP. I understand that if you are positive for the braf mutation you should take the zelborafy as it is very fast acting but you can become resistant to it. Braf positive people can then take ipi. There is also another drug which I think is a later version of zelboraf called dabrafebab (sp) which is also on the compassionate use programme. My husband's oncologist was very reluctant to prescribe the ipi due to the side effects and cost but we went ahead with it. My husband suffered very minor side effects and does not seem to have gone downhill since he started it. He is to have PET scan in the next month or so to see what effect it has had on his tumours which included brain, spine, lung, bones,adrenal gland etc. our biggest problem is that the tumour in his cauda equina has left him in a wheelchair due to nerve damage. He had dicarbazine chemo as first line treatment but it did not work. He then has radiation whole brain and on his spine which were very effective in controlling pain and alleviating headaches. He was a pilot so now is unable to work. He has a very positive attitude and we are hopeful that the ipi will prove successful as time seems to be of the essence with all the new treatments which seem to be in development. Hope this helps.
Barbara