I'm a stage IV melanoma patient with BRAF mutation as well. I've been diagnosed in october 2015 during my second pregnancy with no primary. I started with mekinist and tanfilar in november 2015 until august 2016 with a complete response. I have now no evidence of disease and don't take any treatment anymore. I was a lucky one. Keep positive and meditate it was very helpul for me to stay focus on recovery and deal with anxiety. My kids helped me alot as they are both under 3yo and i wanted to stay here for them. Never give up and eat healthy. I dtopped my treatment because my oncologist and i wanted me to go onto an immunotherapy trial and i needed a wash out period but the tumours had shrank so much i wasn't eligible so we waited another month and we are still waitibg for them to grow back. They are now nearly inactive. I had metastasis in my spine pelvic bones and both armpits. We don't know how long it's going to last but I'm hoping forever. Apparently my immune system somehow took over . So i hope you'll be a lucky one too. These meds are great and i had bad side effects the first 6 months then it got better. The fever and shivers are the worst but it was all worth it at the end. It sounds random but keep positive and you may win the fight like many these days!
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.
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