Newbie on the block

So sorry to hear about your situation. It is difficult enough to cope with it without the added pressure of the coronavirus.I had three years ago a very large tumour near my kidney and others near my spine and in my lungs. I was given tablets for 7 months and they reduced the tumour burden by half. I did have side effects eg fever and bad shaking at times. However I was still able to continue my life style resting when I felt I needed to. 

I am now on immunotherapy. With this I have less side effects so this might be available for you after a while on the tablets. The tablets seem the safer option at the moment as it means going into hospital for immunotherapy. I was in a poor state three years ago and now am able to live a normal life. The tumours have disappeared in my lungs and are still shrinking or staying stable elsewhere. New developments are happening all the time and I am grateful for all the treatment and care I have had. 

Pits easy to say try to remain positive as these treatments are amazing. Eat well ,try to do some form of exercise if you can I have just begun yoga and I found it hard at first but persevered and now feel I am gaining the benefits. Take care 

Hi ZZpups, a second welcome from me I can remember what it was like for me in July 2015 when I was told I my metastatic melanoma was incurable. (In my head terminal means all treatments exhausted, so I’m going for incurable with you also) I started my treatment with a targeted therapy drug called Dabrafenib, I’m wondering if that’s what your having. After 9 months I went onto immunotherapy drug Pembrolizumab for a year, at which stage I was no evidence of disease, but my very long story is in my profile I just wanted to let you know your not on your own.

I can remember how head spinning  it was when I had my diagnosis, we might have approached it in a different way as I felt a bit numb of emotions I remember, I’m not sure if that’s what you mean by dream like. I used to listen to a lot of music to help me work out how I was feeling. I have been really lucky with my treatment becoming no evidence of disease but then a bit unfortunate that had had a recurrence after a year off treatment. I’m hoping perhaps Tim90 and MoiraA, can pop in to say hi as I think maybe you could do with some good news stories at the moment but clicking on the user names that I’ve put in might let you read their profiles, and perhaps you could complete yours in time. 

I am expecting you might feel about down until you come to terms with your diagnosis and perhaps get your first scan results after a few months of tablets, I hope they go well, I think it’s best to think optimistically even when at the back of your mind you will have a thought that your response to treatment doesn’t necessarily mean things will go well. It’s difficult getting a balance sometimes. I no longer feel incurable even though my treatment road has been a bit bumpy at times, but I’ve definitely been through those thoughts as back in 2015 I was told my prognosis was less than a year. That was before I was well enough to start on an immunotherapy drug which became available on the NHS a few months before I needed it. 

I expect you are just getting used to the timing of your tablets, which can be a bummer, and are apprehensive about which of the many side effects if any might come your way. I had few side effects but when it was necessary to ring my 24 hour line they couldn’t have been nicer.

Ask me and people here anything that you think will help you, and browse the information and support pages if you fancy it. There’s also the Macmillan support line if you just want a chat and if things crop up that you need they can refer you on to for instance a benefits adviser. 

Best wishes

Hi ZZpups

I was mentioned in the reply from KTatHome 

I'm sure it's all very overwhelming for you at the moment. I think one of the most important things is to keep as calm as you can, not easy I know, especially reading all the material that's around. Most of the language is frightening and it's easy to get overwhelmed. The important thing is to do the right thing for yourself, look after yourself mentally and physically so you're prepared to deal with the treatment and take it all step by step. I had stage 4 metastastic melanoma in my lungs, classed as incurable, but thanks to the advances in treatment, and in my case that was immunotherapy, I have recently been classed as having a complete response, no signs of cancer. 

It's a long story and if you look on my profile you'll see I've done a number of blog posts that you can have a look at. It took around 3 years since the start of my cancer journey to get to where I am now, but it is a real example of going through the process and I think might provide a positive message for you. I'd be happy to answer questions or provide any advice support if you want to message me. Remember hope and belief is very important as you go through this.

Best wishes

Tim

Hi ZZpups

I was told that I had incurable melanoma five years ago. I am still here! I also am NED (no evidence of disease).

I remember that feeling that my whole world had changed.

I was treated with immunotherapy but I understand doctors' reluctant to start people on immunotherapy at the moment because (a) it requires regular visits to hospital and (b) it disrupts the body's immune system, which may be a problem if you get Covid-19.

You don't name the pills. Are they dabrafenib (Tafinlar®) and trametinib (Mekinist®)? If they are, then you are on 'targeted therapy'. There are also some other types, but that is the most common.

I was also offered 'dab and tram' when I chose the immunotherapy but I still feel that I have the 'dab and tram' in my back pocket should the melanoma return.

Being on 'dab and tram' does not mean you will not be offered immunotherapy later.

It is really important t keep your cancer team informed about your side effects. If I were you, I would keep a symptoms diary and I would make sure I had permission to e-mail my contact (in my case my Specialist Cancer Nurse [SCN]). I used to e-mail about side effects symptoms regularly.

All the best

Hello everyone,

Thank you so much for your replies, I've found them really helpful at this early stage for me. It's good to be able to talk to people going through the same experience.

I am indeed on 'dab and tram', started taking them on Thursday 24th and my consultant has also mentioned immunotherapy.

When my consultant gave me the results of my pet scan and the news I didn't want to hear, although he said 80 - 90% of people respond to the treatment I didn't feel overly encouraged by his 'delivery' of this and the nurse who was with him had a look of doom etched across her face. Perhaps it's just their way so as not to build your hopes up.

Thank you all again and I've taken on board your advise about keeping a diary etc,