Simmy from Oz -Melbourne

Jenni, sounds like your husband was a true fighter, battling on with this vicious disease for as long as he could, so that he could create more lasting memories with you & your children.  God bless him & God bless you Jenni and all the loved ones he has left behind.    Thinking of you during this hard time, Simmy xo

Jenni, sounds like your husband was a true fighter, battling on with this vicious disease for as long as he could, so that he could create more lasting memories with you & your children.  God bless him & God bless you Jenni and all the loved ones he has left behind.    Thinking of you during this hard time, Simmy xo

THERE IS ALWAYS HOPE….. you must always believe that and make sure that your son lives that 'hope' everyday….   Yes, I agree your situation sux big time, it just doesnt seem fair, and as a mum you must be devastated and feel helpless.  Ive had to watch my mum suffer everyday since i was diagnosed stage IV last july.  January this year, I had that many tumours throughout my whole body including one in my brain, that it seemed like all our prayers, hope and faith had been unanswered…..     until I got a call and it was my turn to get the drug PLX4032.  This was the original BRAF drug, but now there are newer and more effective ones with less side effects.  Anyway, after taking this drug for 8 weeks, my brain tumour has gone and all the tumours in my body have shrunk significantly!!   And I am soooo happy and thankful… yes the side effects are harsh, but im alive 🙂  

So i reccommend that you get your boy to well known melanoma clinic and specialist, and get tested immediately to see if he has the 'braf' gene..   but even if he doesnt, you still cant give up….. MIRACLES HAPPEN EVERYDAY,  NEVER EVER GIVE UP.  love & light, Simone xo 

THERE IS ALWAYS HOPE….. you must always believe that and make sure that your son lives that 'hope' everyday….   Yes, I agree your situation sux big time, it just doesnt seem fair, and as a mum you must be devastated and feel helpless.  Ive had to watch my mum suffer everyday since i was diagnosed stage IV last july.  January this year, I had that many tumours throughout my whole body including one in my brain, that it seemed like all our prayers, hope and faith had been unanswered…..     until I got a call and it was my turn to get the drug PLX4032.  This was the original BRAF drug, but now there are newer and more effective ones with less side effects.  Anyway, after taking this drug for 8 weeks, my brain tumour has gone and all the tumours in my body have shrunk significantly!!   And I am soooo happy and thankful… yes the side effects are harsh, but im alive 🙂  

So i reccommend that you get your boy to well known melanoma clinic and specialist, and get tested immediately to see if he has the 'braf' gene..   but even if he doesnt, you still cant give up….. MIRACLES HAPPEN EVERYDAY,  NEVER EVER GIVE UP.  love & light, Simone xo 

What a little CHAMP your son is!  He's dealing with all this 100 times better than any adult Ive met.  He's in my thoughts and prayers tomorrow…  I believe in him and his positive energy and love of life, He'll beat this if anyone can. xoxo

What a little CHAMP your son is!  He's dealing with all this 100 times better than any adult Ive met.  He's in my thoughts and prayers tomorrow…  I believe in him and his positive energy and love of life, He'll beat this if anyone can. xoxo

Hi there, Id love a copy as well.   [email protected]      thanks so much!   ive got lots of info too that ill find and put up over the next few days. xo

Hi there, Id love a copy as well.   [email protected]      thanks so much!   ive got lots of info too that ill find and put up over the next few days. xo

Hi there Alison,

My name is Simone, from Melbourne.  I'm not sure if you remember me but I contacted you probably about 4 years ago after being diagnosed at Stage IIc in 2005.  I initially had my WLE at The Alfred, where they did no x rays, scans, bloodwork, nothing!  After doing some research of my own and realising how serious my condition could be, I wrote about my concern on this board.  You replied to me, gave me lots of advice and we emailed each other a few times, sharing our stories.  You recommended I find Dr Phillip Parente, who you had seen, and go and tell him about my diagnosis.  I immediately got in contact with Dr Phil, and have been seeing him as my oncologist ever since. .  Do you remember me? 

Anyway, you may have read on here, that last July after just making my '5 year mark' I became a Stage IV  🙁   I found a lump under my arm, and scans showed that the cancer had already spread significantly throughout my liver.  My life changed overnight, as you can imagine….   Over the last 9 months, which have been hell, trying DTIC and IPI, and quite a few months with no treatment (only natural treatments and my own diet, lifestyle changes) the cancer continued to spread to my lungs, abdo, and brain.  I ended up in hospital in Jan, after bloating up very badly, being in horrific pain and hearing from Dr Phil that I didnt have much longer, and that I was not going to make the release of PLX4032, which I was to receive on 'compassionate grounds' as I was initially on the BRIM3 Trial (back in July), and had unluckily been allocated to the DTIC group.

I didnt believe what I was being told, and continued to have hope, faith, and remained positive and kept smiling (the traits that have got me thru the past 9 months)  AND MIRACULOUSLY while in the pallative care ward in The Royal Melbourne Hospital, I received a phonecall saying that the drug I had been waiting for, was there at Box Hill Hospital waiting for me to start taking the following morning!!  

9 weeks later, here I am at home, feeling pretty damn good!! (apart from a few side effects)  BUT the great news is…. the tumour in my brain has disappeared, and the other 'countless' tumours throughout my body have shrunk by an average of 70% !!!!!   and this was after first scan at 6 weeks!!   How lucky and blessed am I?? 

I thought I would tell you my story, as I believe that I owe you a 'thank you'.  Without your advice and help and encouragement all those years ago, when I was oblivious to how serious my condition was, I might not have got the regular medical check ups and treatment that I very importantly required.  So Thank you Alison….  I see that you are still often on this site, offering others your help and advice, thats so very kind of you, and im sure I speak on behalf of many other 'new, naive, scared sufferers' 

I was wondering if I could have your email again, as there is something else I would like to share with you.  If you want you can email me your address.   Mine is    [email protected]

Hope you are well and happy and all is great in your world,

Simmy from Oz……    xoxo 

Hi there Alison,

My name is Simone, from Melbourne.  I'm not sure if you remember me but I contacted you probably about 4 years ago after being diagnosed at Stage IIc in 2005.  I initially had my WLE at The Alfred, where they did no x rays, scans, bloodwork, nothing!  After doing some research of my own and realising how serious my condition could be, I wrote about my concern on this board.  You replied to me, gave me lots of advice and we emailed each other a few times, sharing our stories.  You recommended I find Dr Phillip Parente, who you had seen, and go and tell him about my diagnosis.  I immediately got in contact with Dr Phil, and have been seeing him as my oncologist ever since. .  Do you remember me? 

Anyway, you may have read on here, that last July after just making my '5 year mark' I became a Stage IV  🙁   I found a lump under my arm, and scans showed that the cancer had already spread significantly throughout my liver.  My life changed overnight, as you can imagine….   Over the last 9 months, which have been hell, trying DTIC and IPI, and quite a few months with no treatment (only natural treatments and my own diet, lifestyle changes) the cancer continued to spread to my lungs, abdo, and brain.  I ended up in hospital in Jan, after bloating up very badly, being in horrific pain and hearing from Dr Phil that I didnt have much longer, and that I was not going to make the release of PLX4032, which I was to receive on 'compassionate grounds' as I was initially on the BRIM3 Trial (back in July), and had unluckily been allocated to the DTIC group.

I didnt believe what I was being told, and continued to have hope, faith, and remained positive and kept smiling (the traits that have got me thru the past 9 months)  AND MIRACULOUSLY while in the pallative care ward in The Royal Melbourne Hospital, I received a phonecall saying that the drug I had been waiting for, was there at Box Hill Hospital waiting for me to start taking the following morning!!  

9 weeks later, here I am at home, feeling pretty damn good!! (apart from a few side effects)  BUT the great news is…. the tumour in my brain has disappeared, and the other 'countless' tumours throughout my body have shrunk by an average of 70% !!!!!   and this was after first scan at 6 weeks!!   How lucky and blessed am I?? 

I thought I would tell you my story, as I believe that I owe you a 'thank you'.  Without your advice and help and encouragement all those years ago, when I was oblivious to how serious my condition was, I might not have got the regular medical check ups and treatment that I very importantly required.  So Thank you Alison….  I see that you are still often on this site, offering others your help and advice, thats so very kind of you, and im sure I speak on behalf of many other 'new, naive, scared sufferers' 

I was wondering if I could have your email again, as there is something else I would like to share with you.  If you want you can email me your address.   Mine is    [email protected]

Hope you are well and happy and all is great in your world,

Simmy from Oz……    xoxo