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Client5740

 
 New Diagnosis - how fast should one move ?? - 2010/09/03 20:28 Hi all,

A good friend revcently had a Stage 4 Melanoma removed from his shoulder and they took a large piece so I assume it was radical excision. He was given a PET /CT and a small spot showed on his kidney and one on his Lung. THis was 4 weeks ago. I have tracked down Doctors in Australia (he lives in Asia) and Brisbane will work and I see Prof Smithers is the lead Doctor in Brisbane.

He has been booked for a Sentinal Node Biopsy but they said he coould have 1. Blue Dye 2. Radioactive isotope or 3. Both. He plans to head to Brisbane at the end of the month. he is about 54 smoker and drinker. I am concerned he is not facing the facts that this is a life threatening disease and he need to get cracking NOW.

My Questions:
1. Which is the best SNB to do ?
2. Should he be moving faster ?
3. What is the most likely treatment ?

Many tanks in advance.
CA
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hermie1960

 
 Re:New Diagnosis - how fast should one move ?? - 2010/09/04 05:42 Hi there, my name is Herman. I have had my SNB done by Mark Smithers. I have no regrets, not sure if what I am about to say will make a lot of sense, for me it is very simple I put all of my trust in Mark and followed his lead. At all times I ask all of my Drs what would they do if it was them? With regards to your other questions I continue to have a drink and enjoy life with my friends and family. I live everday like it could be my last, that doesn't mean that I am stupid or spend my money like there is no tomorrow. I just enjoy the moment. Smoking is never a good thing but again that is a personal preference. Here is the most important thing to consider, your friends health needs to be at an optimum level and he really needs to consider building his imune system. Do what is right and what feels right. I hope what I have said makes some sense, it has been six years since I had all Lymph nodes removed from my left armpit region I continue to enjoy... You and your friend are welcome to contact me at any time especially if in Brisbane, I would love to offer support where I can if I can.

Herman Herlaar.

Post edited by: hermie1960, at: 2010/09/04 05:44
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Client5740

 
 Re:New Diagnosis - how fast should one move ?? - 2010/09/04 20:51 Hi Herman,

many thanks for your feedback. Glad to hear you have good confidence in Prof. Smithers. I am still curious on the type of SNB which is best. Any further input appreciated.

CA
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hermie1960

 
 Re:New Diagnosis - how fast should one move ?? - 2010/09/05 22:23 Dear CA I can't remember exactly the type of investigation used for my SNB however I do recall it being a radioactive dye used to trace the node. 3 out of 4 nodes traced had melanoma in them so I guess it was worth having the procedure.
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Client5740

 
 Re:New Diagnosis - how fast should one move ?? - 2010/09/08 23:52 Tx Hermie for your reply. I assume you had surgery to remove the affected nodes. I am still curious if Interferon is staill the main line of treatment if there are any mets.

I also understand there are some very good results from the BRAF treatments in Australia. I heard on the ABC Dr McCarthy saying they have apaper in a medical Journal discussing teh positive ground they are making with BRAF.

Regds
CA
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hermie1960

 
 Re:New Diagnosis - how fast should one move ?? - 2010/09/13 14:57 Hi CA sorry it has taken me so long to reply to your post. Yes I had my Lymph nodes removed and I continue to believe this was the best course of treatment to take in my case. I was offered Interferon as it was considered the best treatment for anyone who was stage III. The choice for me not to go on this trial was easy to make, as I was told that this treatment would leave me feeling sick with flue like symptoms... I just wanted to stay as healthy as possible and believe in my own immune system to work on any microscopic cells that remained. I have met many people who have done well on interferon and likewise many who have done well without. Ultimately trusting in my Dr and knowing if there were any changes I could go back to him and start treatment if required.
You are right there have been some tremendous responses to Braff and as a matter of course it may be worth knowing if your friend has the Braff gene. Stage III is a very survivable stage and most people who get treatment early will go on to live a full and happy life, it is important to remember the body’s own immune system is a very strong tool in the defence against melanoma.
Hope my comments have been of some assistance.
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