I have been waiting for my pet scan results and have had many sleepless nights. Three years ago I had an 18 cm tumour near my kidneyand melanoma in my lungs and near my spine. I had 4 infusions of ipi and Nivolumab before 2 years of Nivolumab.
I received my results today and even though I have a tumour that is 6 cm and a smaller one they are both showing no evidence of activity and are dead .The ones from my spine and lungs have disappeared.The only things showing upon my scan are a tiny spot on my thyroid I am going to have an ultra sound on it but the consultant thinks it may just be inflammation.
.I really find it hard to take in these amazing results after 3 years of treatment and 10 years with melanoma. I just wanted to post this to show how the treatment can work. I also want to thank people for the support I have received from this site.
They are thinking about stopping Nivolumab in 2 months. I am apprehensive about this but was assured I would have regular scans and can go back on Nivolumab if any progression. I am writing this in the middle of the night so please excuse any typing mistakes I will continue to post any information and updates. Thanks again for helping me in times of feeling down.All the staff at hospital have also been amazing.
Thats fantastic - I am so happy for you and your family.
Don't wait for your ship to come in, swim out and find it!
It's great to read your good news story lgrgdg90!
Wishing you all the best for many, many years of no progression.
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That is pretty amazing and really lovely to hear xxx
Thank you. I still can’t believe it as I was told initially that I would not be cancer free and the best I could hope for is to be stable. I have asked all along how I could promote a better response and was told not to have probiotics or antibiotics unless they were needed. I ate lots of fruit and veg and walked everyday. I didn’t shield and it was just as well as was told 10 weeks into lockdown that I didn’t need to as the study they did on the effects of the virus with people with melanoma was done with only 4 Chinese people who had other health conditions I believe we need as much fresh air as possible I was told I can go back on nivolubab if I get any sign of cancer.
Thank you for your kind words. Yes hope you are right.
Hi lgrgdg90, this is really good news so pleased for you. I can remember how good it felt to be off treatment for a year after really good results (and the bit of apprehension coming up to scan times) I am crossing my fingers and toes for you to have a really long continuing response while not on treatment. It can be a great feeling knowing that your body is doing it on its own now, and for the big majority stopping treatment that is what happens. Fabulous news long may it continue.
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Thank you. I should feel great but just feel strange and can’t take it in I was told it was unlikely to completely go. I don’t know if I mentioned I have one spot showing on my thyroid and am going to have an ultrasound soon.
I think it’s hard to get my head around it as a friend of mine who has ocular melanoma has been told it has spread to the liver and is due to start ipi and Nivolumab at the same place as I am attending and same consultant. He has been told it’s likely not to work for him .
My tumours are still there but consultant said the pet scan shows they are not active and have calcified .
Its a strange feeling when I tell people what the consultant said and they say I should celebrate but I feel unsettled and can’t sleep. My husband and I are going away for 5 days travelling around Somerset so maybe I will feel better then. I got so worked up to expect a bad report as this is now 10 years since first diagnosed. I hope you are well and I do thank you for all your support.
Hi lgrgdg90, I think it’s great that your having a break away. Sometimes we need a rest from thinking about things, and a break can reset things for us.
You did say in your first post that tumours were there but dead not active, that there was one tiny spot on your thyroid that they want to do an ultrasound on as it may just be inflammation. I think I was comparing that to my liver MRI being extra cautious in case it’s something and hopefully ruling it out as nothing and then for you in 2 months stopping or pausing treatment depending on how you look at it. I think nothing active and off treatment is a good place to be in, but I know it will have its own worries of things coming back while off treatment, but then we worry they will come back or progress on treatment !!
I hope you will be able to shelve thoughts about the melanoma aspect of your life in between scans. I found that coming up to scans it was unrealistic to keep those thoughts away but that it helped to plan something else enjoyable to think about, it didn’t have to be big just a different activity or date to focus on. It’s more difficult when people aren’t meeting, and places are more difficult to access, but you’ve already shown how resourceful you are by having a Spanish holiday at your house with Spanish food and dancing, I thought that was fantastic.
You may find friends who rallied around before see you as no longer needing help and you may need to chat about that aspect. I used to have migraines after not during the some stressful times, so sometimes when we have coped and coped we need to take some time to chill and that’s not always expected, sometimes the expectation is that we can cope with more but different stuff straight away and that’s not always the case. I have seen in the life after cancer group often how people struggle more after the biggest threat to them is over, a sort of post traumatic stress, so be kind to yourself, is what I’m trying to say. I’m saying that to myself as well so if I’m not around as much that’s what I’m doing being kind to myself.
Enjoy Somerset. . Give yourself some time to think about what this news means to you, your family & friends. Let it all sink in slowly.
Oh and eat more cake!
Thank you What you say makes sense and hopefully going away will keep my mind occupied. Also I think I need to concentrate on my husband who has put minor health issues to the background and now we need to deal with them It will be a change chasing around after someone else !
Thanks again for your help and I you look after yourself x
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