Short time, first time

Hello Sumbawa, your metastatic melanoma diagnosis must have come as a shock, I know it did for me. You haven’t mentioned any side effects and say you feel great, that’s good. You don’t need any useful questions to come along and chat, and I’m certainly not going to predict any you might have.

Can I think of any tips to impart ? 

When you get a chance you could (not compulsory) copy and paste your intro into your profile, that way it’s easy to remind ourselves about you when and if you reply to or start later posts, or write a different version. To do that click on your user name, tap edit profile write away and press save at the bottom. (You can look at others profiles by clicking on their user name or picture)

 If you you forget to ask questions during your consultation, you should be able to contact your specialist cancer nurse inbetween who will get an answer for you.

Nice to meet you and welcome to the group. My metastatic melanoma diagnosis came in 2015, I’m on a different treatment to you which I started in November, I have previously had the single immunotherapy Pembrolizumab (like Nivolumab) but not the double. 

Hi Sumbawa and welcome to our caring community.  What a whirlwind of a diagnosis you've had and I'm sorry it's "gone on tour" as you say.  Life certainly does throw curved balls at us.  It must all feel quite unreal right now hon so take your time.  There are definitely no silly questions on here. Anything can be asked.   If you can, and want to, note down any questions that you think of at anytime. As KTatHome says your skin specialist nurse are invaluable, more accessible than your team of doctors for questions.  Take care, one step at a time xx

Hi sorry to hear your diagnosis. If you read my profile you will see I have had similar melanomas in lungs, spine and near my kidney. I am still on Nivolumab. Enjoy a almost normal life and feel well. I was first diagnosed in 2010 and have had various operations and treatments. I am waiting at the moment to have a three monthly scan that will be four months before it happens due to holidays etc.

I just wanted to let you know you are not alone. If there are any questions I can help you with feel free to ask. Apart from four weekly trips to hospital and blood tests taken 2 days before I try to get on with doing what I like doing which is walking ,seeing friends reading and going on short holidays as often as possible. 

I was very ill three years ago and lost a lot of weight but ipi Nivolumab and targeted drugs has done an amazing job and the tumours from my spine and lungs have disappeared and the 2 large ones near my kidneys have shrunk and may be dead cells now . 

I do wish you well and I know what a shock it is at first. I was angry,sad frightened all at once but once treatment started you get into a routine .

I get tired after the infusion then a da6 or two afterwards but that is all the side effects I have now. I had more taking both drugs but nothing too serious. Take care 

Hi KT,

thanks for your generosity. Good tip regarding the cut and paste of my intro - will do. 
thanks also for the tip about reaching out to my specialist cancer nurse. I will have to find out who that is. I don’t feel like I have been assigned a specialist nurse - but I’ll see what I can find out. 
I hope you are travelling well with your treatment. 
peace 

Sumbawa 

Hi L, 

really nice to hear from you. I am happy that things are going well for you, that Timor’s are gone or shrinking and that side effects are manageable. 
your message said that you were diagnosed in 2010. Have you been on 4 weekly treatment since then?

my doctor told me some of the more side effects that are experienced by 50% of people receiving treatment. Have you uncovered any information about the 50% that font experience the serious adverse effects? More simply, what can I do to best avoid them? Doc told me there is little research on that but potentially a healthy, diverse microbiome may be a factor. 
Most sustained side effect has been a skin rash; itchy but manageable. 

thanks again

Sumbawa 

No I haven’t been on treatment since I was first diagnosed My melanoma spread about four years ago I was given dam trab tablets first and they worked very well for 7 months until a tumour started to increase in size. I was then given four treatments with ipi and Nivolumab on a 3 week cycle. Then Nivolumab every 4 weeks.  I developed vitiligo on my upper arms and my eyelashes turned white. My hair started getting thinner on the targeted tablets but grew back when on Nivolumab and is very thick now. I did have a slight itchy rash on my legs and arms but only mild and was given antihistamines and a steroid cream for it. My joints ached at the beginning of treatment. 

As for trying to avoid side effects I think a good balanced diet may help. I ate and still do a lot of berries and other fruit. I was told to eat a wide variety of food and not to have probiotics and avoid 

antibiotics if possible I

I try to get fresh air and walk often. I did try yoga at home during lock down but seem to have  got out of the habit. Ido get anxious at times. I think because this illness is almost invisible to people some don’t realise what you are going through. My friends always say how well I look.  I don’t google for information but do use this site as it helps to keep up with the latest treatments .Sorry if I am rambling. I do at times have difficulty sleeping so am writing this at 2 in the morning.  I am retired now so can sleep in if need be .  My husband has been my rock and used to accompany me to all appointments but due to COVID can’t at the moment. Try to listen to your body and rest when you need to. Hope this helps. 

Thanks again for response. You’re not rambling at all but Sorry to hear about the insomnia. 
thanks for the good advice, now get to sleep :)