Scan result not sure how I feel

Hi Alibobs 

I can understand why you might feel deflated as your previous scans have shown a reduction and this one has remained stable. I'm not in the same position as you, so it's not easy for me to say how I would feel in a similar position, but having re-read what you've put I think I'd side with the nurse and be happy with the result of no progression.

Sending some virtual ((hugs))

Hi Alibobs,

I hear you. I in a similar situation. I started immunotherapy in June 2023 and I've been on steroids twice since then. Overall,  since June I've had 2 Ipi/Nivo and 1 Nivo and then a pause in treament because of colitis. I've been on steroids for that for 2 months and I have another month to go. I hate that I can't have the Nivo while on steroids. My first scan result in August showed a reduction in the size and agressivity of the tumours. My most recent scan however showed (1) no reduction in the physical size of the tumours but (2) a reduction in the agressivity levels/avidity levels. The consultatant told me 'This is good news. It shows a continued response.' 

Like you, I left bad when I heard this. I thought: 'Crap! They thought there was a danger the tumour would grow!' I felt scared and at risk. Especially, since I wasn't having the Nivo that was scheduled. I still feel not-so-good about all this, but it is true that it is good news that there is no progression and there is a continued response. I notice your message didn't mention the avidity levels of the cancer, so I wonder if you could get more information from your CNS about that part? I found this information in a letter from the radiologist to my consultant that popped up in my new NHS 'My Chart' system. It reassured me that the agressivity had gone down, even though the physical shape hadn't changed.

I feel a bit calmer since seeing my consultant on Thursday because I'm no longer worried that they'll stop the Nivo because of the colitis not resolving. They started me on a 2nd steroid called Clipper, in addition to Prednisolone. They also have a strong steroid called Infliximab up their sleeve if necessary. They also said we have time: patients at my London hospital are allowed to have up to a 4 month pause in treatment (because of side effects).

Thinking of you and sending you all good wishes.

Dots 

Hi Dots 

Thank you so much for your detailed reply, it's good to know I'm not the only one going through these thoughts!

Your experiences sound similar to mine, I had my ipi/nivo stopped after 3 rounds because of colitis back in March. I was on steroids for 3 weeks and luckily it improved enough to come off them. It took a good month or so to completely clear up after that but touch wood I haven't had any colitis issues since then.

They wouldn't let me have the 4th double dose because of the colitis but my scan after the 3 doses showed such good results they said the 4th dose couldn't have done anything else. The doctor I saw after that scan said it had gone in my thigh and that there were no active cancer cells in my lung. The letter that was sent to my gp after this says 'a significant reduction in pulmonary nodules and no appreciable fdg uptake and the left thigh uptake had also resolved worth no fdg avid lesion appreciable' I don't know what fdg uptake is though! 

I haven't had any other letters that I've seen since then, this one came up on my patients knows best. The doctor I saw that day wasn't my consultant and when I've since seen her and mentioned what the other doctor said about no active cancer cells she's not really commented on that so that is confusing me quite a lot. I've just looked at that new app you mentioned but I'm in Hull and our hospital isn't listed on there.

I'm so pleased to hear about your reduction in avidity, that has never been mentioned to me so something to discuss with the consultant at my next appointment at the end of the month. 

I hope you continue to wean off the steroids well and you can carry on with your treatment soon, it is worrying having a break but always good to know it won't be forever. 

Thank you again for replying, I really appreciate it.