Advanced melanoma

Hi windle that's such bad news I'm truly sorry. I know there are some braf wild types on the forum (well I know of  one) hope they will see this and offer some support. It's seems strange that SLNB wasn't offered although I know it's not standard practice in all hospitals. Presumably you had clear margins at surgery and they considered that sufficient but I think I'd want some answers to be honest. There are some inspirational people on here who I'm sure can offer the kind of help you need.

Hi. I have melanoma. I have been treated with immunotherapy. In my case that was ipi (ipilimumab).

I do not think that looking back and thinking 'what if' is helpful. If you had had lots more surgery, the melanoma still may have spread. It may have started to spread before you had your first surgery.

Given that your melanoma is BRAF wild type, dabrafenib and trametinib will not work.

Have you been offered immunotherapy? Maybe the Ipi/Nivo combination?

Hello Windless, 

It doesn't help looking back, but I think we all do it for a second, you can google the NICE guidance for melanoma and it will say if your original mole was deep then they would recommend it, 

www.nice.org.uk/.../1-Recommendations

You haven't said what stage your original mole was so no one here can tell, and some people have them cleared and it still spreads. 

I didn't have an original primary site, and yet my pelvic and abdominal nodes were all effected when diagnosed because of feeling unwell and a due to what was thought to be a hernia. 

Dabrafenib and trab are only given to BRAF positive as it doesn't work on others as others have said, you will probably be offered either pembrolizumab or ipilumamab or a combination of Ipilumabab and involved your oncologist will explain why they will recommend each course. If you want to find out more about the treatments you could look on the cancer research site. I know some people say don't google as you will scare yourself, some people like to feel in control so the more information the better. If you stick to macmillan and cancer research sites things will be fine. Some other sites might have out of date information as progress for melanoma has been moving fast. 

I am BRAF positive and had the single dabrafenib for 9 months until it stopped working and I had a further spread to my ovary, I was then moved to pembrolizumab and in April I will have been on that drug for a year, and all tumours have shrunk so much that they can not be seen and there are cases where when it has gone it might not come back as your body has learnt to attack it itself.

So while it is a worrying time, there is still positive news out there and it does help to concentrate on the positive. I remember feeling in no mans land between hearing the diagnosis and awaiting to be told what if any treatment I would be put on, my head was in a whirl until they got the BRAF results as that and my general level of fitness/ wellness would help them decide which treatment to start.

Good luck it won't be long now til things start moving for you. 

Let us know what treatment they put you on or if you want to chat about your feelings or queries.

Unknown said:

Hi I had my first metastatic tumour last november emerge on my shoulder near to my neck.  I had an operation to remove the tumour and a large bit of surrounding skin but I don't think any lymph nodes were tested or removed.  Now the cancer is back with lots of tumours in the same place plus it has spread to other places in my body.  I'm wondering if my lymph nodes should have been tested/removed in my neck but also in the armpit nearest to where the original melanoma mole was?  My mutation is Braf wild type.  I see someone has reported here with good results with Debrafenib and Trametinib but I've not been offered these drugs.  Does it depend on the mutation which drugs they give you?  If anyone can help me with their experience of treatment offered post first metatases that would be good as I am now wondering if they should have taken out all the lymph nodes in my armpit and neck.  

I had primary surgery for a growth in my lower leg it was tested, positive Melanoma and so four weeks later further surgery plus a Sentinel Lymph node biopsy .... these came back negative and so given the all clear.......BUT two months later a lump appeared in my groin and now even after further surgery , it's in both sides of my groin lymph nodes and I just started Immunotherapy. 

So you see even if they had tested the lymph node at that time it can give false negative result .

What's important to focus on , is what to do now and getting the best treatment quickly ...... if you can discuss Immunotherapy with your Oncologist . I couldn't obtain the treatment in the U.K. So am having mine in France at a specialist hospital . So far it's going well and the scan in April will show if it's working . 

I've researched a great deal , I have Lupus also so it's a tricky field when stimulating the immune system . But I have learned there are many options out there and many people who have been cured on Immunotherapy. The key elements seem to be getting treatment early before it spreads too far , being fairly fit and positive in mindset . 

Sorry this is such a long reply but there really are options out there for you and I wish you the very best of luck. Keep us posted 

Hugs Jill 

Hi, I had a malignant melanoma on my shoulder 4 years ago. This was removed and they also removed and tested the sentinal lumph node which was clear so everybody thought I was safe as the original melanoma was caught early. Last year in August I was diagnosed with metastatic melanoma in my right lung. So, don't relu on lymph nodes the melanoma can travel by other means. I was tested for the BRAF v600 mutation and I was positive so was presecribed Debrafenib and Trametinib which I have now beem on for nearly 8 months. I believe it is this particular mutation that these drugs work with so you need to check.

hope all goes well.

Hi there, I was diagnosed with spitzoid melanoma ( upper thigh ) and have just had WLE and SLNB. I was only just eligible to have this as my breslows thickness was 1.1 mm and I had no ulceration but there was mitosis. I was classed as stage 1B. I am now anxiously awaiting results which may be up to 6 weeks.  I noticed that others had negative SLNB and have then gone on to develop further tumours.  Could I ask anyone what stage they were etc at diagnosis / Breslows , as it seems that there is nothing very sure about what this disease will do.  I am now worried about my results and even if good news it seems that the anxiety may never get any easier? 

Can anyone advise? Thanks.

Hi, I don't remember being given a stage but my melanoma was about 2mm deep and SLNB was negative. I developed stage 4 3 years later and it was a bit of a shock to the staff at Addenbrookes. I am now on Debrafenib and Trametinib which is working very well.

Hi Windle,

Sorry you are dealing with this, I was in same position as you in 2015 had a melanoma removed after a year going to my GP and kept saying nothing to be worried about. after it was taken away I then had further margins taken to make sure got it all. I too had no test if gone to lymph nodes. watch and wait. well after a year I kept saying did not feel ok took a while for them to listen. Had scans and it spread to my liver , lungs and also scattered around my body. I am too Braf negative I was treated with ippi as lots call it. I had good result tumours shrunk by 50%. a year later tumour in brain treated with gamma Knife. I feel let down from my medical GP and feel I am the one got to fight this now cannot change it. There is different treatment for braf positive and negative . The immunotherapy treatments both can have them but Debrafenib and Trametinib  is for braf positive. Keep strong and do not be afraid to ask questions if not sure.

Scooby x 

Hi my husband had stage 4 melanoma and given 12 months when he was offered debrafanib and trametanib it's worked wonders with him,he's been taking it 4.5 years and looking at his ct scans now his prof can't see any cancer he can't say he's clear because he knows you can't see microscopic cells.It is 6.5 years since he was diagnosed the first 2 years weren't good tumours kept appearing he had operations to remove them until he had tumours in places that couldn't be operated on that's when he started the drug we know it's not going to work forever but now there are more drugs out now to try there was nothing when he was first diagnosed he's very positive thinking  

Day said:

Hi my husband had stage 4 melanoma and given 12 months when he was offered debrafanib and trametanib it's worked wonders with him,he's been taking it 4.5 years and looking at his ct scans now his prof can't see any cancer he can't say he's clear because he knows you can't see microscopic cells.It is 6.5 years since he was diagnosed the first 2 years weren't good tumours kept appearing he had operations to remove them until he had tumours in places that couldn't be operated on that's when he started the drug we know it's not going to work forever but now there are more drugs out now to try there was nothing when he was first diagnosed he's very positive thinking  

Hi, I am on Debrafenib and Trametinib and have been for 7-8 months. Just out of interest does or did your husband ever suffer with fevers and if so di dyou work out a regime, drig breaks or something to prevent them?

Many thanks and glad to hear things are Ok.

Paul