Help options in Australia

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1/13/2014 11:29pm
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Replies: 7

Hi everyone,

I don't post much but read everyday.

My dad was diagnosed stage 3 in Feb2011  had surgery and 4 weeks radiation. Everything was good until March2012 when scans showed it had spread to lungs. He was on Zel for a good 10months with amazing results but became resistant in May2013. 

Recently, he's just finished ipi at the start of Decemeber and first scan showed 80% reduction/tumors gone but 20% had continued to grow. We just got more scans back this week and it shows continued spread. The Doctors here have said he's only got a few months left!? I feel like they're just giving up, he hasn't tried anything else other than Zel and ipi. Does anyone know anything else he might be able to get into or try here in Australia? I'm desperate! 

Good luck to you all.

x

HelenQLD - (1/13/2014 - 11:51pm)

My mum is in Queensland she was not eligible for any of the BRaf inhibitors or immunotherapy.  She underwent chemo.  I know there were some trials being run a the PA with chemo. 

 

Where are you?  Who is your dad's melanoma specialist.

 

My mum was given 3 to 6 months (but not likely to see Christmas) diagnosis in September.  She is still going strong although very week from an infection she picked up at the end of her chemo.

 

Keep searching high and low and seek second opinions.

 

 

meldad - (1/14/2014 - 12:12am)

Thank you so much for your reply! 

We are in Melbourne getting treated at Peter Mac which have Melanoma specialists. 

My dad is sleeping a lot. Is your mum still having treatment or has the chemo stopped? my dad is only in his mid 50s and I just feel like I can't give up. 

Sounds like your mum is a fighter. I'll be praying for you both xxx

aldakota22 - (1/14/2014 - 6:05am)

So sorry for what your dad is going through. Here i the states I was on "Z" for 23 months before is stopped working..To continue treatment I was put on the newer Braf drug darbrafenib ( Talinfinar).Been on that for approx. 5 months and will find out this Wed. 1/15/14 how I am doing witha MRI and doc visit..Prayers sent your way.  aldakota22

meldad - (1/15/2014 - 6:16pm)

Hi Al,

I always read your posts, so thank you for replying! 

Tafinlar was put on the PBS list here in Australia in Decemeber. My mum asked one of the oncologists and he's response was he thinks my dads condition is too far gone for it to help at all. He said my dad was stage 5? I wasn't aware there was a stage 5 and as far as I know my dad hasn't even developed brain mets. 

I just feel like they're giving up! 

meldad - (1/15/2014 - 6:18pm)

Also just realised today's the 15th! Scan day for you! I know how nerve racking it is so I'll definitely be thinking of you. Hopefully it's working just was well as Zel did for you! 

POW - (1/16/2014 - 8:01am)

No, there is no such thing as a "Stage V" melnaoma or any other type of cancer. That is a strange thing for an oncologist to say.

I have heard of some patients who benefitted by switching from Zelboraf to Tafinlar, especially the Taflnlar + Mekinisnt combo. I am not aware of any clinical trials testing Tafinlar after Zelboraf. However, since aldakota says that his doctor, Anna Pavlick at NYU Medical Center, decided to switch him to Tafinlar you could email Dr. Pavlick and ask her if there is any literature supporting the switch. Her email address is:

 anna.pavlick@nyumc.org

HelenQLD - (1/22/2014 - 11:14pm)

Mum is still plodding along.  No more chemo (it nearly killed her).  She isn't on any treatments now.  She isn't sleeping that much - probably from about 8pm at night to 9pm in the morning.  She does nap through the day but not excessively. 

 

The doctors told us that treatement wouldn't change things and that it only works on 10% of people.  Mum gave it a shot as someone's gotta be the 1 in 10.

 

It is a shame that doctors just write you off when there is still options.