BRAF melanoma, metastasised to bone cancer

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BRAF melanoma, metastasised to bone cancer

6 years ago I had a melanoma on my back, and some lymph glands removed. All seemed ok until last year when after 5 years a 38mm melanoma tumour was found in my lymph glands, and removed along with all remaining glands in the area. Last week I had my 6 month PET/CT and now have braf melanoma bone cancer in spine and arm, and am awaiting results from an MRI I had today. Tomorrow we meet with the oncologist to discuss treatment options, prognosis etc etc. I'm just looking for people in a similar situation to understand how people have weathered the storm, treatment success and what to avoid and hopefully give me encouragement and advice, when, as I'm sure will happen, I don't feel so good, and don't want to burden my friends with endless talk about "how I'm going".
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Re: BRAF melanoma, metastasised to bone cancer

Hey Bryan I have had amelanotic melanoma which is less predictable than melanoma. Have you got someone accompanying you tomorrow? It's tough having to try and explain to friends exactly what is going on when most don't understand. Hang in there and see what they have to say tomorrow and go from there. Thinking of you Julie
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Re: BRAF melanoma, metastasised to bone cancer

Thanks Julie, My wife went with me, but I spent a few days previously reading lots of material, and had built up enough knowledge to be dangerous, and plenty of structured questions for the oncologist. (I can't help it - I'm an engineer!). Knowledge is power, so I felt in control to some degree and able to ask sensible questions, and get logical discussions going. By the way sites you might find helpful if you're not already aware of them are http://melanomainternational.org/melanoma-facts/melanoma-treatment-stage-iv/#.VxLV4ORf1PY http://www.petermac.org/news/sugar-junkies-melanoma-cells-found-be-addicted-glucose-offering-new-treatment-hope http://www.petermac.org/news/global-landmark-clinical-trial-defines-new-treatment-combination-people-advanced-melanoma http://www.webmd.com/cancer/features/bone-metastasis-what-happens http://www.cancer.net/cancer-types/melanoma/treatment-options http://www.cancerresearchuk.org/about-cancer/type/secondary-cancers/secondary-bone-cancer/secondary-bone-cancer. Anyway the meeting went well, my brain is clear, but the bone cancer was in more bones than I realised, but early stages. I'm starting today on Tafinlar and Mekinist which are relatively new drugs - I'm about the 10th person on this in the hospital in Geelong, tablets taken orally, with usual potential side effects of tiredness, fever, skin problem (including new skin cancers). I'll have another PET in 3 months we'll see if they're having the desired effect - so a waiting game as always. I hadn't heard of your type of Melanoma - hope you've got a good up to date oncologist. Are you happy with your treatment? Have web sites been helpful to you? Good luck..think positive Bryan
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Super Contributor

Re: BRAF melanoma, metastasised to bone cancer

Hi Bryan GLad to hear back from you and I reckon that's great re researching. Being an engineer you would know enough to make sure the validity of sites and information that you are reading. So glad you had someone with you as that can be important, although I go alone these days ... no biggy to me really. Once you know what you are dealing with it is easier, even if it's not the greatest scenario. Bit like waiting for the initial cancer diagnosis the brain goes all over the place. I focus on keeping my brain in neutral during this time and although I don't always achieve the battle distracts me from going places I don't need to go to. I wonder if your treatment is related to some of the monoclonal treatment I had (for a different cancer). I should probably tell you I have had 2 serious cancers and one less so (just recently - sporting 5 stitches on my neck at the mo). Amelanotic Melanoma is not widely known and I often have to educated GP's on it. It is very unpredictable which in my case turned out to be great as I had secondaries in my lymphatic system with no known primary found. They initially suggested I had a month to live and that was 28 years ago this year, give or take a few months. My second cancer was Base of the Tonue BCC with a T4 N2 M0 and still here after that one. I had chemo, radiation which was combined with monoclonal - which incidentally seems to have very similar side effects as the ones you described. THanks for the site references and I will take a look some time and check them out. Also, others reading this will find them useful am sure. I was happy with my treatment and back when I was first diagnosed surgery was the only option recommended to me as they didn't have chemo that was effective except for slowing tumour growth and I went on the wait and see list for that. My professor that did my op was wonderful with a very sick sense of humour which was pretty good for me. 🙂 The oncologist that I saw was, back then, considered to be a world leader in melanoma and had many patients visit him from overseas. Not sure where he is now as I haven't seen him for many years. You take care and you are sounding much clearer in your post. Julie \
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Re: BRAF melanoma, metastasised to bone cancer

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! 

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Re: BRAF melanoma, metastasised to bone cancer

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

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