Melanoma metastasis

Hello Puppy. I am very sorry to hear of your diagnosis.  I have had the same experience. I had a melanoma on my chest removed in 2018 and the WLE and then 3 monthly dropping to 6 monthly checks with dermatology for nearly 5 years.  I did ask about CT scans but was told they were not necessary.  I think I should have been more insistent.  Last year I developed a large lump under my chin which turned out to be metastatic melanoma which, like you, has spread to many places including my brain. I was prescribed Mektovi and Braftovi (because i have the BRAF gene) which I think of my little miracles in tablet form because I am here more than a year later and all my tumours are either shrinking or stable.  Giant lump has gone completely and I am no longer in the terrible pain I was in last September.  But, of course, it has not gone away completely and is inoperable. You are right - we should all be aware that melanoma can spread invisibly - with no new moles or evidence on your skin.  I knew this but didn't want to think about it too much. I now have 3 monthly scan.  I honestly don't think that scans earlier on would necessarily have helped.  Scans don't pick up everything and it would appear that my cancer had probably only "got going" a few months before the lump appeared so earlier scans might not have helped.  Anyway, we are where we are and I personally try not to go down the "what if" road.  I hope your treatment is now on track.  All my very best wishes.

Hi  thank you for replying & your good wishes. It is great to hear that your body has responded so well. I also have the Braf gene B600E and have been put on Dabrafenib & Trametinib (D&T) 

It is early days and I am waiting to see how the cancer is responding. The hospital staff have been very kind and thorough with CT scans and regular appointments now.

I haven’t had contact with support groups. Have you found any helpful?  How are you feeling? It must have been hard when you had pain and the diagnosis is tough to absorb. The advances in treatment are wonderful and like you I am trying to remain positive and enjoy activities day to day. Where in the country are you? I hope you don’t mind me asking. 
Is this page more for discussion? I don’t want to be too personal if that is the case.

Best wishes

I just wanted to thank both of you for your comments on this.  I have literally just been told that I have the BRAF mutation.  I'm currently on 4 cycles of ipi/nivo and then my Consultant will decidwhat route to take.  It is.good to see some positive results with the alternative treatment.  My case was slightly different in that the first I knew I had cancer was when I was diagnosed with metastic melanoma in my lungs.  Was quite a shock I can tell you and,.although I've known for about 2 months, the enormity of.the situation has only just caught up with me now. 

Hello J55

It certainly takes a while to absorb the news and its impact on one’s life. The treatments seem to have advanced so much in the last decade I think there is hope. With my first diagnosis & initial dermatology treatment I had been feeling relatively positive & having had regular check ups at 3 month intervals each being clear I probably didn’t ask enough questions. 
it was therefore a shock how advanced my cancer was I had had abdominal discomfort but felt it was irritable bowel or similar but on colonoscopy CT scan & MRI the cancer has metastasised & spread considerably.

i feel ok at present so am planning days out and making contact with friends enjoying each day at a time. My next appointment will show if the treatment has been working.

it’s good to hear from others so do stay in touch. It would be interesting to hear what your consultant advises.

very best wishes

Thanks Puppy.  It is really helpful to talk to others in a similar situation.   I will definitely keep in touch

I'm keeping my fingers crossed for you, Puppy, that your results are good.  I am very well just now thank you.  I've had loads of side effects, but most of them have gone away after a few weeks, but I still have peripheral neuropathy which makes my feet and lower legs feel very weird.  That hasn't gone away but I am able to deal with it now - I have to laugh when my daughters tell me that I'm "walking very well" in the same voice as you would use for a wee babytlearning to toddle . I find everyone on this forum very helpful though there are not many people who have the same diagnosis as me (you are one of the few) and also very few getting the same treatment as me.  And tbh, although I have had this diagnosis for over a year now, I really don't know what all the abbreviations mean.  I think it might be possible to send messages that don't appear on the forum although tbh I don't know how. I'll try to find out.  All my best wishes 

Hello J55.  Im sorry to hear about your diagnosis - that must have been a terrible shock for you, I can't imagine how hard it must be to be going through this while still working.  I also have tumours in my lungs (and many other places) but I am getting a different from you.  That said, since I am more than a year into treatment - I take 12 pills a day every day - there might things I have experience of you and might be helpful so please ask if you think I could help.  All my best wishes

Hi, thank you so much for taking the time to reply.  It is comforting to be in touch with others who have similar issues and also to hear that you are a year in to treatment and doing well.   Metastatic melanoma equally is so different to all the other types mentioned on here.  I'm guessing that if my current  treatment isn't working then I will be moved to something different.   I will be in touch if I have any questions, it's very kind of you to offer.

Taker care x

Hello J55.  As far as I know that there are quite a few different treatments that they can try.  The drugs I was given worked very quickly - I honestly noticed the lump under my chin shrinking within a matter of days!!!.  I don't have any experience of the treatment you are getting. Is it tablets? And is it given in cycles? Take my tablets every day and as far as I know, I will just keep taking them until they either stop working or I get very bad side effects that I cannot tolerate.  All the very best.

Hello 

I thought I would say my experience of medication. I am on Dabrafenib & Trametinib (d&t) in a similar way to :  I was not expecting that. I will do so until it is no longer working or my body reacts badly. At present I seem able to tolerate them I do get a buzzing sensation in my ears but I have a  reasonable energy level and no pain. Are you able to do regular activities? 
I am no longer able to drive and find this difficult. I have moved to my daughter’s home for now as transport to hospital & shopping proved complicated.it takes adjustment for sure.

All the best to you both on this community line & journey. It’s so good to be positive X