Metastatic melanoma stage4

Hi Jimble,

I'm really sorry to hear about your diagnosis. The positive thing is that you're starting treatment soon, which is a big step forward. My mum was diagnosed with stage 4 melanoma about 15 months ago and has been on immunotherapy since then—sounds similar to what you'll be doing. Thankfully, she's had very few side effects and is doing really well. She's retired now, but honestly, I think she could’ve worked part-time if she’d wanted to.

In the beginning, it might help to just take things one day at a time and see how your body responds. Then you can figure out what feels manageable alongside the treatment. Being a math teacher is such a great strength, you’re already used to staying patient through challenges.
Sending you lots of strength—you’ve got this. 

Thank you - this is exactly what I need to hear and gives me the strength to push forward. 
I hope your Mum stays well, it sounds like she’s doing amazingly - the thought of even just another 15 months fills me with hope 

L x

Hi Jimble.

I can’t comment on your specific medical issues, however I thought I’d respond regarding your comments about the up-coming immunotherapy treatment.

I’ve completed a two-year immunotherapy program (Ipi/Nivo for four treatments followed by Nivo for the rest of the period) and I’m now in remission.

No-one can say how they’ll respond to the treatment. I was lucky, in that I had a little fatigue for the first few treatments (nothing that an occasional 20 minute afternoon nap wouldn’t sort) and that was about it in terms of day-to-day side effects. My adrenal glands were also attacked by my stimulated immune system, which means I now have to take two hydrocortisone steroid tablets each day, however that seems like a small price to pay for the destruction of the cancer cells in my body!

Good luck for the future, and here’s hoping you get away lightly with the side-effects like me!

All the best.

Thank you for your response - it’s so helpful to hear positive stories. I guess the only way I’ll know how I’ll cope is to get started on treatment so thankfully I’ve only got a couple more days to wait. 
Good luck with your journey - I hope you stay in remission and healthy for many years to come. 
L x

Hi Jimble. 
I have had notification today that I will be starting immunotherapy on Monday 28th April. I was originally stage 3b but there were bilateral growths found on my adrenal glands which means I’m now stage 4…..very scary, but at least I am starting treatment (with some trepidation). I suppose it’s the unknown. 
we must absolutely remain positive, we can do this, positivity is half this terrible battle. For me, I feel I must protect those around me, it’s bad enough having this awful situation as part of our lives but it’s certainly not going to ruin them. 
it will be good to compare treatment notes just to see how we are doing. Stay strong. 

Hi Jabs,

So sorry that you are also going through this. What a bag of emotions!

It is hard to get the balance right between talking about your feelings and protecting your nearest. My sister has been unbelievably strong and a pillar of strength for me. My partner lost his previous partner to breast cancer 8 years ago when their son was 6  I’ve asked for counselling because I don’t know how honest to be with them both.  It’s so hard.

I am positive that I can get through this. I think of my immunotherapy as building an army of immunosoldiers that can march through my body fighting cancer cells. When I can’t sleep, I actually imagine them punching the cancer rogues down like in a video game!  I am determined that they will win and am ever grateful for the advances in treatment. None of this was around when I had my skin cancer 1997 and 2002.

Good luck with your treatment Monday. I don’t know about you, but I’ve been a nightmare to live with on the run up. I guess I am petrified but don’t want to voice it!  You are right - it is the unknown.

We CAN do this. 
Stay in touch. 
L x

Hi Jimble.  
I had my oncology appointment today with the results of my MRI on my adrenal glands, unbelievably they showed NO melanoma. They don’t know what the growths are but they are not melanoma, or indeed cancer. I am totally gobsmacked as I was convinced it couldn’t be anything else. Of course this means I am back to stage 3b which I am obviously over the moon about (how can I be over the moon about having stage 3 melanoma, this is just how this journey muddles the way you think). I still have to start immunotherapy on Monday which I am still anxious about, but my family have said I don’t have a choice!!!! How crazy is that, so many highs and very lows. Treatment for at least a year…… a small price to pay. 
I have also volunteered for some clinical trial. It involves me having to report any side effects I get, having more blood tests than usual and biopsies should something unforeseen happen. This is so that they will possibly be able to predict what side effects different people might expect. 
I hope you are ok after your treatment, I’m interested to know how your feeling, let’s hope the side effects are minimal, don’t forget to get them immunosoldiers on the move. Thinking of you and sending extra strength, we’ve got this.