I was diagnosed with the same only with synchronous metastasis of the liver also last year in May, was wondering if there were any similar cases or of any other nasopharyngeal carcinoma cases at all.  ... View more

Hi how are you? I hope you are doing much better. I have the same cancer as you. It is rare I have had 2 operations and about to undergo a third. Just wanted to see how it went for you and did you do your surgery at Peter mac best wishes ... View more

Hi Bryan, I am not having any side effects from the Braf meds, except the first day when I was totally tired. My oncologist started me on a lower dosage because a different oncologist previously gave me a very strong dosage which was way too strong for my body to handle. Current oncologist told me to contact the clinic any time if I experience any nasty side effects and they would adjust the dosages accordingly. This was great info - as the first oncologist didn't have any experience, the current oncologist does have a lot of experience with Braf dosages - to suit each patient.    I hope you were given that option. The current dosage I have is half the dosage I was given originally, and is much better! The original dosage had me totally bedridden - and I only took it for two days!   I will be hoping for a positive reading on a PET scan set for next week, but am ready to hit the natural materials if the Braf is not working. I will continue with the Braf as well, but give it a hand if required.   My malanoma metastisised mainly to my brain, and I had a 3cm tumour removed in December, still have another six or seven there, another one or two in a lung, and a tiny one in my liver.    I haven't suffered any pain at all and the only side effects are short term memory issues and, while on the Braf, some instanses of imbalance. They only last a few seconds. I think I need to travel along with the Braf meds and work up to Immunology. Thats the impression I get from the oncologist.  I have experienced an SCC, and this was mentioned in the info for Braf meds. The GP diagnosed it. It came up really quickly, the size of a wart, no colour, but it really was itchy. His recomendation was to remove it surgically ASAP. It is now dead and gone. I do expect to have more SCC's appear - because I have had many BCC's over the past decade and must be prone to skin cancers - including that melanoma 😞  Life goes on and it's all great, and I only have to see the oncologist monthly at this time.  I keep a positive attitude happening, and this may take some serious 'music' days where I play lots of my favourite music up really loud ( I live alone so I can), or planting vegies in my little garden, and doing anything I want to do. I cannot go back to work, ever, accoring to my prognosis, but I still catch up with my workmates. That helps too because it makes me feel that I am still a part of my old life..  When my diagnosis was given to me I couldn't even understand what they were saying. The big one in my head was affecting me very badly. It was quite sudden, and my whole life changed just as quickly. Now I can enjoy an early retirement and enjoy my family and friends, and I give thanks for every beautiful day. I have been through a rough few months not knowing what was in store for me, and seeing some really negative medics in my home town. That has changed now, I am seeing an oncologist that does know what they are doing, does listen to what I tell them, and I feel so encouraged by that. I take joy in seeing some of those overdue jobs being completed around my house - solar system, fence replacement, electrical work. I think it gives me a sense of accomplishment and makes me smile. That's all I aim for, a smile, happiness in what I can do with whatever time I am blessed to have. I have had an interstate friend, and an interstate relative both come to stay with me a couple of times. I know they are scared that I may not last long, and I know they are saying goodbye in their own way. This is OK with me, I understand they need to do this and I don't take offense or feel sad, that's just life and how it happens. I still feel fine, I look fine, and I still do everything for myself.  As you said, this may change at any time and I won't feel so good. We do need to have somebody to talk to who will understand and offer encouragement, and I believe that friends and family may not fully understand how we think in this challenge/situation. I tried explaining exactly this to my daughter and although she means well she cannot fully grasp my feelings on my mortallity when I need to talk about it. I feel that it's not fair on them that they should listen to my thoughts. They want to enjoy my company, not to hear how I feel about it sometimes....I did consult a councellor with the Cancer Clinic and she was amazing help to me whenI was feeling down.  I hope your consulation was a positive one, and my very best wishes that the meds are friendly to your body. Kerri   Cheers, Kerri ... View more

Hi DapneRose, I have had similar problems, I was introduced to the low FODMAP diet and it has helped so much, i have been able to add back a lot of foods, i also have been using essential oils and having great success. I was at the stage where the doctors go, well we have done everything now it is up to your body to heal. Easyer said than done, you just get over one thing and you get another bug. If you use oils you need therapudic grade, it has made coping a lot easier.   ... View more

Recently had a low grade fibromixoid sarcoma removed from my right arm and am wondering if anybody else has/had this type of sarcoma.I'd be happy to hear from anybody in similar situation as cannot find much info about people with a similar sarcoma ... View more

palative care is free through Medicare. Get in touch with his GP or oncologist and they will be able to get this in place. my mum was with silver chain and they were all so amazing. All there services from cooking to cleaning to personal care etc was free of charge also. They would anything to help you and the family out in anyway we had the social worker come out once but between 3 adults looking after mum we didn't need the addional services.  I guess if you go privately you pay for this or the gap if you have private Heath although not sure on this as mum was a public patient.    Hope this info helps.  ... View more

I know this is a somewhat old post, but I really like what sharon said about gaining some confidence back and I wanted to quickly share the experience that my friend had and how wigs helped her. She was distraught when she started to lose her hair, and to tack that on to what she was already dealing with is no easy task. Initially she didn't want to give wigs a shot, so I went ahead and ordered her some after I read up on wigs for cancer patients: http://www.godivassecretwigs.com/wigs-for-cancer-patients/. Luckily enough I already knew all her sizes and everything so i placed the order. She was hesitant when she recieved it at first, but after the reception she got wearing it out for the first few times, she was ecstatic! It really helps some women gain their confidence back, so thanks for sharing Sharon and I hope others are inspired by your example. ... View more

hi      It is a near certainty that I will expire before my children finish primary school. In October 2012 I was diagnosed with advanced colon cancer, aged 34. Two operations and 12 cycles of chemotherapy later, I was declared cancer-free. A blissful three-month interlude of normal life concluded just before last Christmas, when I was told that the cancer was back, had spread aggressively and was now incurable. I’ll be shuffling off this mortal coil long before my allotted threescore years and 10, and probably before my twin sons hit six or seven, which I think is impossibly young and they think is impossibly old.         Expressive Therapy For Depression ... View more

Thank you for your replies. Yes I think an water aroebics class would be good for me as I get exhausted still from walking short distances.    Last week, I returned to work against my doctors advice, and unfortunately towards the end of my shift I became so lightheaded, that I collapsed to one knee, and broke out in a clammy sweat with blurred vision. I was then called a lift and sent home.    Its really hard to accept at 24 years old that I'm this weak and at times helpless.    Im grateful to still be here though and I won't let these lasting affects beat me mentally.    Thanks again for the responses and god bless ... View more

You will prevail, give yourself time. Please don't worry about what might happen and enjoy your kids with a lighter heart. They will pick up on your panic and it will do them no good. Relax and take each day as it comes. Funny telling you this "take each day as it comes" because right now my youngest daughter actually has an incurable blood cancer and I tell myself this every day. This forum is a great resource for people like us because we are communicating with people who understand what we are going through. The fear is so debilitating and serves no purpose other than to make us sick too. You can do this. Be a warrior for your children. I wish I could say god bless you, however I no longer believe there is a god. I do believe in love. Love to you and your family. ... View more