Progression

Hi Sun, I thought I would reply although I may not really be able to answer your question. 

I started Pembro in Jan and at that time had a clear baseline CT scan. My follow up scan in May showed a 1mm lung nodule. My Aug CT scan showed this as 3mm. So based on this my Oncologist is worried this is a reoccurrence. I had a PET scan yesterday. If this is confirmed as melanoma I’ve been told the Pembro would stop as there would have been progression whilst on it. And that in the 8 months on Pembro a response should have manifested itself. 

I don’t know how your scan looked prior to starting the Pembro ? I believe it can take people a few months before they see a response so I’m assuming here that you will continue on the Pembro  as your Oncologist believes you are potentially now responding. 

Best wishes

Paul

Hi Paul

thank you for your response, it seems your oncologist has a different view to mine. Has your oncologist discussed your next treatment ??. There is always so much uncertainty. I’m just so worried about everything again. 

i have an appointment with the consultant who removed my previous tumours tomorrow,  for a skin check so I will ask his views, hopefully he will be able to reassure me. 
iv read some research and some patients have been kept on the same treatment when progression has happened and had a good outcome , fingers crossed il be one of them .

kind regards sun 

Hi,

I was told that should I have an isolated nodule on the lung then they would treat with radiotherapy. Then watch and wait. 

if there is more spread then it would be Ipi / Nivo. 

They would stop pembro as deeming that the disease had progressed through this treatment (10 cycles every three weeks since Jan). 

Im finding it pretty hard not to worry but trying to stay as positive as I can. 

Paul

Hi Paul

i recently had radiotherapy on my lower spine, ‘GRAY  8’ ,this was just for pain relieve, but it worked straight away and in my view is brilliant. 
I know this is only a temporary measure and dreading the day the pain returns, but that’s if it does. 
when are they thinking of giving you the treatment , everything seems to take so much time. 

Iv had 4 cycles of Pembro since April every 6 weeks , so I’m thinking that would be 8 cycles if having every 3 weeks.  
Iv just had a conversation with the nurse about the decisions made and she put the whole thing in context for me. She said they look at everything not just the scans . She said that I’m presenting as so well so that is part of the decision. She said some people are the opposite and  really poorly and therefore different options are considered. I feel better and reassured talking to her, but you can’t help but worry. What I will say is this nurse has been there for me since  January  when I had my operations , 3 in total and she’s always been straight with me and said it how it is. I always feel more positive talking to her and I’m off to see the consultant and her later today so I’m keeping everything crossed

kind regards sun

Hi,

It all depends on what the PET scan shows. If it isn’t isolated then I will need the pembro to leave my system before starting Ipi / Nivo. So late September most likely. 

If the melanoma is isolated to one spot on the lung they will then go for RT with details to be decided. 

I haven’t had any side effects or really felt any pain / ill the whole way through this. Just been difficult for me to keep positive. 

Im glad you are a bit more reassured after speaking to your nurse. 

All the best

Paul

Hi Paul 

spoke to the surgeon and he said it’s my choice  to have the two Tumours removed, but one seems stable and the other has only recently appeared. Until we get another PET scan to compare measurements of the cancer on my spine it’s hard to say what is going on. At this stage he don’t feel surgery is beneficial, so Iv made the decision to monitor them. They think the treatment must be doing something as the tumour hasn’t grown in 8 weeks. But if I change my mind he will remove them.

still no clear answers but will there ever be ? I know who you feel in trying to stay positive, but we must. There’s so many people on here who report NED - hopefully we can be doing that in a few months time 

kind regards sun

So my PET scan was inconclusive. The nodule on my lung could well be melanoma that is too small to show. Or it could be scarring due to Covid. 

Will be scanned later in the year. 

Hi Paul 

fingers crossed it’s the latter of the two. I hope everything keeps going in the right direction for u .

kind regards Sun 

Hi Paul G1 

That's good news to hear. "Inconclusive" still leaves you wondering but at least it's not  definitely melanoma.  I find all the "unsure" "inconclusive" stuff hard, even "NED" is hard. It doesn't stop the worrying.  I just try and bury my thoughts and make plans for the immediate future. That's all I find I can do.  I'm not fighting it or being a warrior or in a black hole (have had depression for over 20 years).

I'm sorry you remain worried hon but all I can think of is to just try and fill your life and mind with other things.  It's such a crap disease, cancer that is, it lurks around eating at your brain.  I don't want it to be the thing that defines the rest of my life so I plod on with my alottment and plans to study.

Take care xx

Yes that’s what I’m trying to do. A year on from my original diagnosis you try to find the best coping mechanisms. 

I will find out the next scan date on Friday. Will then try and park the worry until then and just try to crack on !

You must be close to finishing your adjuvant treatment now ?

Best wishes !

Paul