Newly diagnosed with melonoma

Hi , in 2015 my GP sent me to A&E for a suspected hernia, a few weeks later I was diagnosed with metastatic melanoma in numerous pelvic and abdominal lymph nodes. My biopsy showed that I was BRAF positive so I had targeted therapy first (Dabrafenib) and then Immunotherapy (Pembrolizumab) I am currently no measurable disease. If you click on my user name it will take you to my long profile that gives more detail. I hope you haven’t long to wait for your oncology appointment. Any questions that I can help with just ask.

Hi, thank you  very much for replying to my post. I have read your post and it has given me a bit of hope. I have quite a lot of tumours, 2 of them I can visible feel and it knocks me sick when I touch them. As of last week, my tumours were only small, the biggest being 6mm, the rest around 2 -3 am, I'm petrified that they will grow rapidly before I see someone.

I've spoke to oncology today and they have said that I should hear from clatterbridge within the week and even though I'm trying to be positive, I'm having my wobbles. I haven't really cried properly yet and I know I need to but scared I wont stop, I have too much to live for.

Reading about the drugs available is bewildering me. I'm going to read about the treatment you received. Going on Google has not helped me at all today so I'm going to just going on reputable sites from now on. 

I really do appreciate you responding you have gave me hope

X

Hi , I was in hospital for a week when I first was referred to A&E, I felt sick and could feel and see a big lump, a lovely Macmillan nurse popped in everyday that week to see how I was and advised not to google, (I had my iPad in hospital). I found the cancer research site, Macmillan and melanoma focus good sites to look at when I did need to find info. I then looked at the melanoma patient conference videos, as they have some useful stuff, I’ve been to two of the conferences. I had a gap of several weeks between diagnosis and treatment starting due to not being well enough and waiting for BRAF results, then the possibility of going on a trial and needing a further scan for that, and my biopsy being sent off to America. In the end I was advised to go with NHS treatment and not the trial as I was also worried about the time gap. When treatment started it seemed to make me feel better quite quickly, such a relief. 

Do you know if you are BRAF positive yet? To have the option of Dabrafenib and Tramatenib?

i think I was seen about a week after my diagnosis, time seems to go so slowly when you are waiting for a treatment plan to kick in. 

I wondered if you might find these links helpful, in no particular order.

1) Macmillan's section on coping with emotions -

https://www.macmillan.org.uk/information-and-support/coping/your-emotions/dealing-with-your-emotions

2) Cancer research’s clinical trials for melanoma 

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/clinical-trials-search?populate=Melanoma&f%5B0%5D=field_trial_status%3A4386

3) melanoma Focus - A patient decision aid for stage 4 melanoma. https://pda.melanomafocus.com/stage-four/

4) melanoma patient conference video on treatments by Dr Pippa Corrie https://youtu.be/cHi62ToWdek and there are other videos of side effect management.

5) A link on melanoma focus to a video by Lancashire Teaching hospital on starting Immunotherapy. melanomafocus.com/.../

I hope your wait goes quickly for you, and that you find some of these useful.

Best wishes

Hi Liz1976

I had immunotherapy four years ago and I have been NED (no evidence of disease) for three and a half years.

I hope immunotherapy works for you too.

All the best