New to the group and inspired by the togetherness of the group. Lovely to see there's support.

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Hi everyone, 

I have been muddled up with this site on my phone and have messaged in wrong groups so I apologise if you've read this before.

I am 39 years old and have recently been diagnosed with stage 4 melanoma cancer with multiple brain and lung metastasis. Obviously this was a shock and hearing the words we can "only try to prolong your life" was hard to digest. 

I had a 2.9mm nodular malignant melanoma removed from my upper back in 2018. I had wide local excision and sentinel node biopsy which came back negative. Unfortunately 3 years on during a routine head scan for my eye check the brain tumours were found and the rest followed.

I've had 5 sessions of full brain radiotherapy and have currently had one round of immunotherapy Opdivo(Nivolumab) and Yervoy(lpilimumab), my next round is on the 28th of June.

I have always been a positive person and that is not going to change. I have to believe that miracles can happen. I am the proud dad of 7 year old twin boy's. My boy's were born prematurely on 24weeks gestation, they had a horrendous start to life spending many months in intensive care. They're both now non-verbal autistic with severe learning difficulties but they're amazing and my absolute reason to keep going. I can't even think of not being here for them and leaving my wife to bring them up alone. 

Everybody's journey is different but I hope you're all having good news with your own personal battles. Don't lose hope because as my boy's have shown me, miracles can and do happen.

Has any body had some positive news lately with immunotherapy?

All the best,

Steve 

The strongest people are not those who show strength in front of us, but those who win battles we know nothing about.

  • Hi Steve, Nice to see you back. I hope you've managed to gain some weight after your last treatment and that you're feeling better. I hope the new drug yields some uplifting positive results. Take care, Rainie x

  • Hi Rainie,

    I've managed to put a stone back on so I'm starting to look a bit healthier, thanks.

    Hope you're doing well.

    Steve 

  • That sounds good to me, a stone is good. I'm on Nivu for over 5 years now ( lungcancer) only side effect is that my Thyroids are playing up. So i hope it works for you as good as for me!!!

  • Hello Steve and others, good to hear you have had a positive response to the immunotherapy and hope that continues of course. I also have stage 4 melanoma. Coming up to 2 years now on immunotherapy to which I have had a partial response. Still got same number of tumours in my liver and lung but have shrunk a bit. Got my scan results appt coming up later this month where consultant will tell me if my treatment is stopping as they only give 2 years so I am very anxious about that as have been told there is no other treatments (BRAF negative). I am grateful to still be here but also still so scared. My children are 18,23 and 31 now so lucky they are not really young but awful to think of leaving them too soon. On top of this my husband of 25 years is now with another woman (after over a year of horrible behaviour) so I've told him it's over and he's in process of moving out. So I have huge pain and anger and hurt. Didn't think life would deal me such a blow on top of my cancer. I have done a lot of work on dealing with the cancer grief and fear, there are resources out there, counselling, courses, websites, books etc if you are well enough and have any time. The love and support of family and having people you can open up to honestly is I feel the most important and I hope you have that. Sending best wishes.

  • FormerMember
    FormerMember in reply to Tess73

    You are getting there Tess and you will get there. You are facing these challenges with a lot of bravery, your kids are old enough to look after you for a while so lean on them, they will be grateful to help you I'm sure.

  • Thanks Norberry, your replies are always positive and make me feel understood and supported.

  • Hi Steve, I've just caught up with this post. I'm so pleased you have managed to gain some weight, it was probably down to hospital food too, so being home obviously helps as you can eat what you feel like just when you fancy it! Also when you know you Look better, you tend to Feel better too! It must have been so difficult being away from your boys but now you can make up for lost time. Look after yourself!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Tess, I have been wondering how you have been. It is great your family (but not your husband) have all rallied round to support you, you deserve it, you have had so much to cope with! Good luck with your results, please let us know how you get on! Thinking of you and wishing you all the best. It is great your children are now adults and they can give you lots of TLC!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Pet1968,

    Sorry for late reply the site wouldn't take me to my groups it was just saying I hadn't joined any.

    That's great you've had good results for over 5 years, long may it continue.

    Take care,

    Steve 

  • Hi Tess73,

    Hope you're doing well, sorry for late reply the site wouldn't take me to my groups it was just saying I hadn't joined any.

    I didn't know treatment could only be given for 2 years!

    Sorry to hear about your marriage breakdown but sounds like he doesn't deserve you anyway. Spend as much time with your family as possible as they're so important for support.

    Take care,

    Steve