Update

LucyM · Experienced user Joined: 06 Jul 2009 Posts: 51

Hi Guys

I just wanted to update you on my friend's situation. She has had surgery, now, which was unpleasant and traumatic...they were going at it with 'curative intent', and she was hopeful. However they've now told her at her follow up that she has only a 15-20% chance of cure. Crying or Very sad

I'm not sure how they have reached this conclusion as she is only stage 3. It doesn't seem real.

I'm not too worried about her finding this now, as I think nothing could make her feel worse than she does - and it's unlikely she would see it anyway. I was just being ultra careful before.

But I wanted to ask, what are her chances of being accepted onto a trial now? She was asking about the Ipilimumab which I told her to, also they were looking at Avast-M for her - she's had no other adjuvant stuff as yet so we thought she would get onto one, but knowing this situation now will it mean she can't qualify?

We are in the UK btw. Thankyou so much for any thoughts.

Lucy

HaoleBoy · Senior User Joined: 19 Aug 2008 Posts: 108

Lucy, I'm sorry to hear about your friend.... There is a wide variance in Stage III disease between Stage IIIA and IIIC....The key question is how many lymph nodes were positive for melanoma and were the metastases micro-mets or macro-mets....If she had micro-mets in 3 or less regional lymph nodes then she will be Stage IIIA (assuming her primary tumor was NOT ulcerated) and the 5 year survival outlook is almost 70%...

Staging for Stage III disease below:

http://www.melanomacenter.org/staging/stage3.html

Bristol-Myers makes MDX-010 (Ipilimumab) under a proprietary patent and, unfortunately, they will not re-open trials due to a drug manufacturing shortfall until early in 2010 -- which I believe is utter BS -- one of the patients on a different forum is a professional in the U.S. bio-chemical industry and he really took Bristol-Myers to task in letters and emails he posted on the board.... Making this stuff isn't rocket science .... I would urge your friend to keep an eye out for new developments in case Bristol-Myers finds "new" production capacity.....

If your friend is Stage IIIA, there is nothing wrong with the watch and wait routine since there isn't much out there other than Interferon for Stage III disease..... I don't know much about the protocols in the UK and our medical establishments are different where it concerns melanoma... BUT she may want to check into GM-CSF if she is IIIB or IIIIC... (Granulyte Macrophage - Colony Stimulating Factor...if I didn't butcher the spelling).... From what I read it seems that the Royal Marsden Hospital in London is the leading UK Melanoma center -- based on the few articles I've read in the British Journal of Cancer -- so perhaps your friend or her care-givers may want to call them and inquire about the possibility....

Link of drugs in US trials for melanoma (dated 21 May 2009) -- Lucy, I emphasize this is a web article based on melanoma trial information from the US National Institute of Health.... so pls read it with this in mind....

http://skincancer.about.com/od/treatmentoptions/a/melanoma_trials.htm

Best Regards and Aloha,

HaoleBoy (aka Hawaii Bob)

LucyM · Experienced user Joined: 06 Jul 2009 Posts: 51

Haoleboy - many thanks for your kind and helpful post.
I apologise that I didn't see it sooner, no email came through this time.

I believe she is probably 3c, right now - she had macro nodes, from dx, and 2 lit up on her pre-op scan (no SNB, they just got right in there) and had everything on one side removed. I don't know what came back but this is what they told her - just that small chance. Not sure about the primary because I haven't asked her for details - we live a long distance apart. But it was quite large - 10cm graft to her head Sad

She had her CLND/excision at the Marsden, so already being seen at the right place from what you say Smile

Can't ask for more than that I guess.

I am Confused

at the news about Ipilimumab. She's trying to get onto a 50% placebo trial atm, but I guess if they're not doing it now she may not be able to. That sucks, we were both hoping it would be worth a shot.
I'll have a read about the GM one you mention and see if they know anything for her...thanks again for your support and help. It is such a crazy time, everything moved so fast since a month ago.

I'll let you know how she goes.

Lucy

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