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Immunotherapy 1 year complete - so happy it's working

Zo-zo
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I had a melanoma jan24 removed but had spread to lymph nodes. Neck dissection may24 and then started immunotherapy 31 July 24 had to be the aggressive type for 4 months as cancer had spread to my liver and i had numerous little tumours and a main one of 7cms.  Anyway im still here 1 year on. Smiling and surviving.   

I had bad side effect to treatment Oct24 and ended up in hospital with sepsis and ive been left with addisibs disease and im on steroids.  Im constantly tired and cant really do housework, food shopping or normal activities like a nice long walk.  All that aside i still remain happy as i am alive and not yet in any pain due to my cancer. 

Cancer is a strange one im not sure if anyone else feels like me but it hasnt been the worst year of my life. Its made me re focus. I was constantly worrying about family and friends and trying to fix any problems they might have. Running around after everyone and felt like i was getting to s stage of feeling burnt out.  Since my diagnosis i realise to let people get on with it and i have for the first time in my life put myself first instead and it feels good. Friends have been so kind and supportive and some family members too.

Life is good, i cannot be cured so i know bad times are gonna happen one day but in the meantime im enjoying life even if i am lazing in bed or on the sofa cos of tiredness, im alive with some great family and friends.  I havent worked for over a year now and cant see a possible return if im honest with myself.  Not long after my diagnosis i found out i was going to be a grannie. I was worried i might not make the birth, here i am 1 year later and just celebrated his first birthday.

Im so lucky my immunotherapy is working atm. My cancer is very aggressive and if it hadnt worked (70% of people it doesnt)  i wouldnt be here now as this type of cancer can get you in 7 months. So i may be tired out but im alive

YIPPEE.... onwards and upwards folks

  • Hello Zo-zo

    I wanted to post to thank you for sharing your story and the good news that the immunotherapy treatment you've been having is working for you.

    Undoubtedly, this won't have been an easy year for you, but it sounds like you've looked for the positives in life, and I know that many of the community members here will understand how important that outlook is when going through tough times. 

    It sounds as if you have great support from family and friends and being able to celebrate your grandson's first birthday is indeed a very happy milestone. 

    I wish you well and hope that you're able to continue making happy memories with your loved ones. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

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    Hi so-zo

    was heartened to ready your post as my story is nearly the same  diagnosed with melanoma Jan 25 now stage 4 with liver lung and adrenal involvement it’s now effecting my eyes and have had double vision for last 6 weeks and await mri results so onward and upwards .

    am due a wee granddaughter in 4 weeks to add to my other 3.grandkids who have kept me going through all of tjis.  I try to be positive and focus on the good things in life and enjoy whatever time I have due to recommence my immunotherapy on Monday so fingers crossed it’s going in the right direction.  The tiredness is  one of the things I struggle with the most as I was a busy body but have learned to chill and listen to my body.  Wishing you well and sending positive vibes.

    best wishes

    madmeg

  • Offline in reply to Madmeg001

    Sorry I've only just seen your reply.  Yes I try to enjoy life but can't be the energetic person I once was. If im goung out with friends I try my best to be the old me but I can tell very often that im not. Especially when the brain fog kicks in and my words get jumbled. I was the chatterbox of our group and hardly let others get a word in so on the plus side they get a chance now. I went out for coffee and cake Fri then later sane day met friends for dinner I did drive but was home and in bed by 9. Next day family bbq my brother hosting I did not have to lift a finger except play with my grandson a bit. Was home by 9 again.  Sat in bed all day no energy whatsoever and today im much better but still done nothing apart from rest then pop into garden to cut a few flowers for a vase.

    Do you get bad days like this. Mad Meg. X

  • Offline in reply to Madmeg001

    Also can I ask why they stopped your immunotherapy for a bit. Was it because of your eye problem. Was it your pituitary glad playing up. I had that. Im now on steroids I taje hydrocortisone tablets 10mg morning then 5mg midday and again at 4mg. They seem to make me exhausted cos the odd time I've forgotten my 4 o lock one I feel much better. Discussed with Dr and they say can't understand it but I did Google and it did say sine people have tiredness from taking them. 

  • Offline in reply to Zo-zo

    Hi you sound so much like me I was a charge nurse always chatting to staff patients grandkids I also struggle when going out with friends and workies as on the outside you look fine but on the inside your Linda trying to be your old self .

    I had the 2 dose treatments for 4 cycles with 3 weeks in between and I also had low cortisone levels at the start and had hydrocortisone but continued treatment as bloods improved by next cycle.  Then I just had 6 week break as per oncologist before I commenced the single treatment today nivinubab I think .  Tiredness and skin itching were my main side effects my thyroid bit overactive but not enough to change my meds 

    when I spoke to oncologist on Thursday she said from my ct some lesions reducing some not in other lymph nodes so no sure until results mri of head neck for double vision where were going next ? Maybe radiotherapy so awaiting results 

    And of course new baby  

    can I ask do you have a partner as my husband is quite a worrier about all this instead of living in the moment that iv kind of accepted it.  Also accepted that im never going work again at 58 i think that’s a big thing as well that im trying to accept.

    Hope your well  it’s great to message someone who understands.its really hard to talk to people who don’t really   ️ ️

  • Offline in reply to Madmeg001

    Yes we sound similar im 57 and worked in the benefits department of our social security. It doesn't bother me that I might not work again in fact the HRcteam had a meeting with me a couple of weeks ago to put forward the idea of an early retirement due tonill health.  I've been off work since my operation a had a neck dissection and the extra margin of skin taken from behind my ear and skin graft may24.  Our treatments sounds almost exact. I had 4 sessions of the double dose and since have been on just the nivulab ever 4 weeks. I havent had any breaks tho. My husband seems ok I've told him to act normal while we still can there will be time for worry in the future. It must be very difficult for them tho cos they the ones that probably lie in bed imagining how they are going to cope if / once we pass away. Must be hard for them. I wouldn't like it one bit if it was other way round. The thought of having to console my daughters grieving over their dad is unimaginable.   In a way I think k im the lucky one going first then I don't  need to go through such headache.  Where did your skin cancer start. Mine was like a wart behind my ear nothing to do with sun exposure at all. Do you know how to change to private chats on this forum. I have no idea as have only just posted a couple of times.

  • Offline in reply to Madmeg001

    Do you know how to chat private instead of it being on the forum. Thi k we have to make friends. I have no idea I don't even do FB. Promised myself years ago I would never join as I know what im like I love looking at photos and I knew I would end up spending too much time on it. 

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