Stage 4 Melanoma

Hi,

i just wanted to reply to let you know that I am thinking of you and your boyfriend.  I cant comment on your situation and treatments but there are a lot of lovely people on here that will be able to give you advise.

Big hugs all round am so sorry you are going through this

Spider

xxx

Thank you Spider, I really appreciate your kind message xx

Hi , I am really sorry to hear about your boyfriend, and of course you’re seeking some positive news that can be applied to him. I saw you had joined the friends and family group and I’m thinking you will get good emotional support from that group, I don’t think it matters if that’s from people who have experience of melanoma, or from other cancers, as the uncertainty and heart break you are going through will be the same what ever the cancer. 

My own opinion is there is always hope until at some point there isn’t, I know that will sound weird, its just that last week I attended my cousins funeral she had bowel cancer and secondary kidney cancer diagnosed in March...... however positive news coming up.

I am a very lucky metastatic melanoma patient, I had steroids when I was first diagnosed as I was too ill for treatment, but for me within 2 weeks of being on steroids I was well enough to start treatment. I didn’t have a primary, my diagnosis came when a big lump came up in my groin and I was sent to A&E by my doctor, admitted to hospital and scans and a biopsy confirmed melanoma in many abdominal and pelvic nodes, I was told I was incurable but there is a difference between incurable and terminal, and that is a question that is best talked through either with your boyfriends keyworker of if you don’t have access to that nurse I would recommend a call to the Macmillan support line. They might be able to talk through what financial and emotional and practical help you both may need, as well as perhaps talking to them about what other treatments or trials might be available. 

It sounds like your boyfriend is not terminal but is classed as incurable, as you have said he should be having another operation in mid June, I was really down when I heard the words incurable for me. I had 9 months on a targeted therapy and a year on the Immunotherapy Pembrolizumab and became clear and was off treatment for a year then had to go back onto it when a recurrence was seen on scans to 3 nodes in April 2018, but still much better than at my worst when it was in pelvic and abdominal nodes and in my ovary. I had an operation in May 2019 to remove one node that was not responding a second time to Pembrolizumab and my last scan shows no measurable disease. So for the second time since being incurable in 2015 I am clear as far as scans are concerned. I still have options if it comes back again, ipilumamab that I haven’t already had, and going back on Dabrafenib that I have had before but this time adding Tramatenib into a combination for me, and my hospital has also been on the news for a trial on TILS that has worked for someone who did not respond to drugs but TILS took some of his own immune cells out and treated them and put them back in. I would not be surprised if their are other treatments available for when I get to that next point. I keep my eye out for discussions on them at the melanoma patient conference each year. 

I am in a positive stage at the moment as I have no measurable disease and although they do not shout cure, remaining clear for a long long time ( I have been at a conference where someone was clear for 14 years and ongoing) feels like a cure. I used to follow the blog of someone who failed Immunotherapy and failed TILS so I am mindful that people never know their own route when they have a stage 4 diagnosis, but your boyfriend is young and that can have a positive impact on receiving treatment, so I very much hope that the steroids help him and that when he is strong enough the multidisciplinary team find a treatment that will help him. I am so sorry he has had such a bad experience so far with his treatment. 

I have been through the will making, and doing a power of attorney form to prepare for the worse, back in 2015, and it’s not a waste but I’m glad they haven’t yet been needed for me.

Giving you the biggest virtual hug and hoping that you feel you can ask any questions you want and express what you are thinking and feeling.

Hi...a bit of positive for you.

i was diagnosed stage 4 melanoma 4 years ago. I’ve had various treatments, ipilimumab, Dabrafenib and Trametinib and currently on Pembrolizumab.

i Know I cannot be cured....BUT the treatments available now are keeping me stable and there are always new drugs in trials etc 

so hopefully you will will find a treatment that suits him and he can be stable for many years 

lesley

Hi Lesley et al,

I'm 2 and a half years in to stage 4 melanoma and currently on dabrafenib/trametinib and really struggling with side effects. [most of the obvious ones]. My tumours [liver, lungs, armpit] have been pretty stable for 18 months.

Did you experience any  side effects? , why did you  move on to Pembrolizumab?

Big love to all,  Mark

Hi Mark

i was on Dabrafenib and Trametinib for 18 months before it stopped working and there was progression. I has side effects too mainly fevers and joint pain. So I’ve now been on Pembrolizumab for a year and stable so far. Side eff3cts mainly fatigue and some joint pain, but no fevers which is a relief.

love

lesley.

Hi 

I was really sorry to read your post. My Partner is 36 & also stage 4. He was initially diagnosed in early 2017 & things have got worse over time & it’s spread to his liver, lungs & back. He’ll have a scan soon & I’m fully expecting the cancer to have spread further. He has numerous lumps now under his skin which he finds incredibly painful & is further evidence of how things are progressing. He also had immunotherapy, which didn’t work for him (one type made him incredibly ill) We are currently waiting to hear if any further treatment is possible.

I can’t really give you many positives other than he’s still here despite being diagnosed around 2 & a half years ago (he was stage 3b then too) and that I know exactly what you are going through. I too just feel incredibly sad & it feels impossible to cope sometimes when everyone our age seems to be enjoying life, it’s hard not to think why is this happening. 

Sending you good thoughts & wishes x

Hi 

I just wanted to let you know that you might not get any replies for a while to the post you've started in this group. 

I tried to reply to it earlier but it's not allowing me to respond and doesn't 'look right' when I try to reply. I've reported it to the moderators but as it's a Bank Holiday if whatever is wrong isn't easily fixable then it might be Tuesday before the techies can work out what's gone wrong.

I didn't want you to think that nobody was replying.

x

Thanks for letting me know. It did seem strange when I was trying to post - seemed to be some sort of error. Thanks also for your message on my post in the other group - I really appreciate it x

Hi

Just would like to say thank you so much for taking the time to reply to my post, I really appreciate it. 

I’m sorry to hear you’ve been through a lot. I hope it continues to stay positive for you. Thank you for sharing your journey with me, you’ve given me some hope so thank you. 

That is correct, they said they can’t cure him at this stage now. It’s the uncertainty that’s so hard, the doctors have said they are worried about him and concerned they won’t be able to contain it. I’m just really hoping it won’t spread anymore by the time he has his operation and starts a new treatment (and that the treatment actually works). 

Do you think my boyfriend will come to terms with it? I’m not sure what is going on in his mind as he won’t open up. We only got the news last week that the cancer has progressed and he’s at stage 4. We are all trying to accept this news but it’s so hard. His future is so uncertain. 

Thank you for giving me hope