hello.   ive come on here to find some people that are going through a some what similar situation .  ive just read your forum. firstly im so deeply sorry for what you are going through.   Im 27 and went to the hospital 4 weeks ago with headaches/loss of vision. after having emergency surgery i found out i have a very rare and aggressive brain tumour. ive asked all my specialists to not inform me of the severity as i need some hope. reading your forum i just thought you were really brave in sharing. im not quite at that point where i feel i can talk about it as its still a bit soon but i find strength in reading other peoples stories.   i hope you dont mind me reaching out but i just wanted to thank you for sharing your story.  its so daunting going through this and ive been trying to find support groups online and in person but im relising theres not that much out there .    i wish you all the health and happiness in the world. stay strong   ... 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 Kerri,   How are you doing today?   This info might be interest to you.   Has anyone else here had experience with BRAF medication? ... View more

Hi Calrs, I am a first timer too. I had a metastisised melanoma which sent its little friends to my brain, one to my liver and one to my lung. I know how you are feeling as I cannot work - ever again according to the medicos, can't drive, but luckily I can do everything else for myself. I feel that my daughter has taken on such a lot and I feel guilty about that. She drives me everywhere, sits in on all my appointments and gave up her family life for me when I had surgery to remove the largest tumour... I keep telling her to take a week off from running me around, but she keeps insisiting that she doesn't know how much time I may have, and she wants to spend all of her time with me. I still feel guilty as I know the pressures she has as a single mum to three beautiful girls.  She also worries about her mum, and even though it is hard to accept, I have to. This has been such an awful time for our daughters, not knowing how everything will turn out. I give thanks that there is such concern, so much love, and caring that our children show us in this time of real need. Otherwise I think I would feel so alone in this challenge. Their confusion and pain is hard to imagine, but it is real. I imagine how I would feel if I were in their shoes, pretty heartbroken and confused..All I can do for my family is tell them that this is what life had planned for me, I have to meet this challenge, and I need them to encourage me, not feel sorry for me, but to be my rock. I feel that by taking on 'the rock' role, my daughter feels stronger, feels that she is accomplishing something really important, and my hope is that this deminishes her feelings of uselessness I know she had. I set her that goal to make us both proud, and it really has helped us both. I am recovered from surgery enough so that I don't need her to help me as much as she would like to. I feel great actually, the only thing I am not supposed to do is drive, as brain tumours may cause seizures or a stroke in some people, but I do ask her to do things for me because it makes her feel very useful. I keep calling her 'my rock 'to keep her importance and strength strong. Even though its now 3 months since I had surgery my daughter arrives almost every morning to my place just to see if there is anything I would like to do, or to go to, this must be so exhausting for her!  I still feel guilty... Maybe we just can't help that, maybe our daughters can't help it either. I hope you are able to find a strategy for your daughter so that she can succeed with her year 12, it must be really stressful for her to see you go through so much. I wish you the very best of luck too!  I also have dealt with BCC's, mostly on my face and shoulders, but the melanoma was on my belly.    I really hope you can find some financial assistance while you are recovering - my daughter applied for disability pension for me as I had no income at all. I live alone and have always worked. Now all of a sudden I'm told I will never work again, won't be capable to perform any function...I can kind of understand that because I worked in finance, and I wonder if I could do that any more after this. Keep in touch if you would like to, Potsyannie ... View more

Hi, my surgery was in December for the biggest tumour on my brain, feeling good, still got another few in there...would like to chat if you want to. ... View more