New to talking about diagnosis melanoma stage 4

Unknown said:

'm a walking contradiction as one minute I'm tellingly  people I'm fine and the next I'm angry or sad......does anyone else feel like  that? 

Yes, yes, and yes! Hi WeWillNever, Except for three people, of all the others who ask me how I'm doing, I don't really go into detail about what its like to be in cancer treatment. Most days I feel and look great. However, I sound like I'm whining when I say the Keytruda gave me arthralgia and fatigue, periodic rashes, and the stress of waiting for scans to tell me if I'm getting better or not.  And anger was another emotion I didn't expect. Anger that I feel 20 years older in my body that had previously worked so well. Anger that years may be taken off my life span. It feels like a cheat. But I do circle around and have trained myself through mindfulness and meditation to appreciate now, keeping my mind from drifting into fear. 

This forum is good for me and thanks for sharing your experience. It helped me feel not so alone facing the unknown. 

Best, Cindy

Thinking positive

It actually felt such a relief and weight off my shoulders just writing it, thank you for replying...I think unless you have chemo and you get the outward signs like hair loss you go through an invisible cancer as it were.....I think you're right though and I would like to adopt mindfulness to try and control how much my mind drifts into the negative. 

Thank you

Hi yes I do understand how you are feeling If you read my profile I had a groin dissection and have had the tablets and now have been on immunotherapy for more than 2 years. As you say I also feel fine most of the time except  the side effects of itching,joint pain and tiredness at times. Because we look ok and have no outward signs of cancer most people would not know the awful operations and treatment we have been through. Saying that I am very grateful for the treatment as it has kept me alive and also the great care of the consultant and nurses. 

I do have times when I have felt so angry as I was originally misdiagnosed by my GP I think this is quite common with moles. 

Also I feel frightened and sad especially when it is coming up to scan results. This all sounds negative but most days I get up and continue as normal. I like to walk with my husband and I do this everyday. I think it’s especially hard at the moment with all the restrictions on life. I am supposed to be extremely clinically vulnerable and keep getting letters to inform me to stay inside etc. I do ignore them as I feel ok and fitter than most of my friends of my age. 

Did you have both the ipi and Nivolumab immunotherapy? I found after going onto just Nivolumab the side effects were less. I was off treatment for a while after first lockdown as I was told not to go to the hospital and my appointments were cancelled. I wasnt  happy about it and kept asking to be treated and they accepted that they had overreacted earlier and put me back on my treatment.I think it is normal practise to finish steroids before starting another treatment but the immunotherapy treatment you had can keep on working . I had the dam trab tablets for 7 months and they drastically reduced my tumours. I wish you luck with the treatment. 

Wow....yes my mole was misdiagnosed originally.

I was on nivolumab and was about to be moved to something stronger because they can't operate. But due to the Immunotherapy-induced pneumonitis I can't be put on the stronger stuff  my treatment had been amazing throughout the pandemic not one of my appointments has been cancelled all except last year through an administration mistake my opp was put back a week... 

I too love walking. I have two dogs and 3children that keep me busy and I'm going back to work in April.....I have a lot to live and fight for and to stay positive about.....wish I'd posted on here a long time ago to see that my feelings are mirrored by others.

Thank you for sharing and the support

Wish you all the best with your treatment

Hi,

How are you getting on? Hope you're starting to see some improvements.

I have recently been diagnosed with stage 4 melanoma with wide spread metastasis to brain and lungs. Very scary times knowing the likely outcomes especially when I have disabled twin boys to look after.

I've just had 5 rounds of full brain radiotherapy and I start my immunotherapy next week. 

Just got to try and stay positive and hope for a miracle.

All the best.

Steve 

H Steve, thank you for asking especially as you are clearly going through such an incredibly heart wrenching time....I wish you all the luck and positive vibes for that miracle! 

I'm still on a very high dosage of steriods because when I came off the pneumonitis flared up restricting my breathing again, so they are trying to take me off slower.....I'll have rescans end of July. 

I'm at work full time and I work with vulnerable adults with additional needs so my focus is 100% on them which I love as it also has that knock on effect to not thinking about what might be going on with me.

All the best to you also.

Good luck with your rescans, must be stressful waiting for them. 

I work adult mental health and disabilities also. Such a rewarding job and it's great you're managing to keep working.

Hopefully you can tell me some good news once you have your scan results. 

Thank you

And everything crossed for you