Update regarding my treatment with Nivolumab

Thanks for the update lgrgdg90, I really appreciate you and others saying what’s happening to them, as my appointments are due next week, and it helps me to get my head around what might be put forward for me. 

I had a relooking at your profile and saw that you have had ipi and nivo so fingers crossed that although you’ve gone from it reducing to stable that it will keep working during the break. Some people never get to NED (no evidence of disease) but stable can be just as good if you feel well and it doesn’t start progressing. So fingers crossed for that.

 As your melanoma is less than it was earlier and that you have felt not as well in the past, that resonates with me, as I’m the same. You have the added worry that you had a big tumour in your lung, so I can fully understand why that’s an extra risk. The risk from the virus is potentially more imminent, with the peak being only a few weeks away, and how soon things get back to normal is a bit of a guess. So I understand the uncertainty.  As you know I’ve had a gap in treatment before and then a recurrence, and a gap for Christmas as they mucked up my change over to 6 weekly, but I take heart in that I am still better than when I was first diagnosed and that treatment is still working. The are some cancer treatments that have gaps built in for people and I took some support from that when I had my gap of one year. 

I can understand you really wanting your treatment, I’m thinking back to how I felt when they only had the 3 week dose ready for me and not the 6 but that’s nothing compared to waiting til June, although we are used to waiting from scan to scan to see how things go. I suppose you have to think how much you have faith in your consultant and I think you’ve said before how good they are and just think of any positives. Not having to worry about going in to the hospital, and finding some enjoyment and purpose in the next few weeks. I hope we can here support you through those weeks. The alternative I suppose is to fight the proposal of delay, but I’m not sure I’m getting that vibe from you I hope you get to feel balanced about how things will be going forward. 

Your stable now, you feel well now, how are your coping mechanisms to see you through?

You mentioned some blood results. I get these on an app each time so that I can see how things change, and it give a range for being normal, the NHS has a section on blood test results and what the ranges are to. I have 36 different results for my blood tests that come through on the app, but I used to just trust the medics that nothing was being flagged up that would stop treatment. 

Ive lost my train of thought a bit in replying to you, as in the middle I had a phone call from my local council to check if I had sufficient essential supplies. I think everyone in the councils and NHS are doing as much as they can to keep us safe and I take heart in that.

Best wishes

Thank you I feel more positive now I have the facts I can cope with the break but would like to keep the appointment in June. I have a lot to do in the house and garden but must also do some craft and baking etc. My blood tests have always been ok. I feel well at the moment it’s just sometimes the emotional strain gets me. I like to think that I am better off than a lot of people as I feel mostly well I will get on with life now as I have got my answers. Thank you again