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 

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

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

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. 

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   ️ ️

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.

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.