Stopping adjuvant treatment

Hi SarahT57, I think you’ve got this, you’ve worked out that you were lucky it hadn’t already spread, and that you were able to start adjuvant treatment. Coming off treatment now makes you like many others on watch and wait, it can make you feel more insecure than when you were on treatment. There will be days when you have a wobble and those words about recurrence will spin round in your head. I suppose there are statistics that say the bigger the original melanoma, the higher the likelihood of a recurrence, but it hasn’t done it yet and it might not, or might not for a long time when there maybe other treatments available with less side effects as things are getting better all the time and you are by no means out of options for later. 

I had a wobble May 2018 when having been off Pembro for a year they spotted 1 and then 3 lymph nodes that had got bigger, oh and again In January 2019 when on Pembro one rogue lymph node grew back to what it was in May !!!! . I found that doing exactly what you have done posting in here helped, it gave me the chance of writing down what I wasn’t happy with, not that I could change it, but it’s just good to vent and then when the venting is out you can try and get your head around any positives and get back to a normal of only thinking of the possibility of a further spread happening on wobble days. 

How to reduce the wobble days, well you probably already have your ways of coping that you used when waiting results. That might be acknowledging that you will have wobbles, and anticipate and keep busy on those days, or have a treat, or talk to a friend, or what ever makes you feel happier. Sometimes though it’s finding out a bit more about your position, I know when I have bad news I can’t immediately get my head around it, and can’t ask the questions, I later feel I wish I had come up with but you will probably have a skin cancer nurse specialist in your corner who you can talk to, or possibly your private insurance has a cancer support line, and there’s the Macmillan support line. There is also the melanoma patient conference coming up very quickly (2oth and 21st of June) I don’t know if you have registered for it here’s the link to there programme which has watch and wait on the agenda.

http://www.melanomapatientconference.co.uk/program/

I will say that with having scans every 3 months a recurrence has been picked up quickly for me. I can’t tell if my ramblings have helped and if you want to ramble any vents back at me and any others here please please do.

Thanks KTatHome. I think it’s hard because originally the oncologist suggested watch and wait but the surgeons really wanted me to have treatment, partly because they said mucosal melanoma is harder to keep an eye on. 

The conference looks really good but I don’t think I’ll be able to make it sadly.

Hi @SarahT57, I can’t go either as I have treatment on that day, but I’ll be looking out for the videos of the conference. I saw today that the hotel is full and the list will be closing for the conference. 

Im sorry that you are going through this.

Hi SarahT57

Just a thought.

Please ask your consultant (and your insurers) whether you will have the right to restart Pembro (or have Nivo, which is the same treatment from another provider) if you give up now.

I am not sure about the current rules for access to immunotherapy that is funded by the NHS, never mind by health insurance.

All the best

Hi , that’s a good point about restarting, I did see NICE guidance about stopping treatment and a requirement for oncologists to inform people of the impact that will have on restarting, and the patients needing to sign that they have been informed. I’m not sure where that info is at the moment to put a link in. 

SarahT57 There are new guidelines on mucosal melanoma that have been drawn up and have some suggested questions for patients to there team in this link you might find useful 

https://melanomafocus.com/activities/mucosal-guidelines/mucosal-melanoma-resources/

Best wishes