I had a positive FIT test in early 2023. Colonoscopy showed stage 2 sigmoid tumour, with no spread. I had anterior bowel resection in April, apparently was successful. I was then informed in May that there was 3 lymph node involvement so commenced cApox chemotherapy. Following dose two of oxaliplatin I had striddor and anaphylaxis. I continued with oral capecitebin until Christmas 2023 . CEA levels were 1.8 to 2.0. I had CT scan April 2024 and the results this week show the bowel is clear but there are some nodules on my lung/s. I cannot describe how devastated I am. I am planning my funeral etc etc and this is upsetting everyone around me.
Hi Court
Thank you so much for your great support. I've only just had a chance to log in. We had my youngest son, daughter in law and a lively grandson here until late this evening.
Will revisit tomorrow and reply as just realised how late it is and my concentration is going!!
Nettie123
Hi APT
sorry to hear your news. Yes I am scared, however this is an understatement. Iwas not expecting the news either as I feel really fit and well, however now I have every symptom that you could possibly imagine.
just waiting for my appointments.
good luck to you too xx
kj64
Hi Court
Thank you for your help. Your mum is exceptional with the way she copes with all the chemo chemicals thrown at her! All for good though. Is she still fine now? I feel we all know her - please wish her well!
I had chemo (Folfiri) last Nov. 2023 - Jan. 2024, to knock back a small met on segment 8 of my liver (just below 3 in size) which had spread and caused a tiny patch on segment 4a. On Feb. 19th, this year, I had liver ablation up at Kings, on segment 8 (segment 4a had disappeared). Hence - now - segment 4a is back and needs treatment.
I had a meeting with my oncologist last Friday. He said it will probably just keep coming back and the answer may be long term chemo, especially as there are some tiny nodules on my right lung and Kings noted that they had grown a little (this is the norm though as they have been growing over the last couple of years, but at a snails pace!)
Anyway he agreed I can have two/three months of Folfiri and (subject to RAS and BRAF tests) may have Cetuximab as well. Then they will re-scan with a 'possible' view to ablation. Hence my interest in Cetuximab!!
If all fails it will apparently be long term chemo. Well - I'll face that if I have to, but may also look for trials; though not sure if they are limited to younger people. I'm an extremely healthy (apart from Cancer!!) 66 year old.
Once again - thanks for your help. Always reassuring to know others experiences.
Best wishes
Nettie123
Hi Kj64
Just wanted to wish you well with everything. It's really hard not to panic when medical issues don't go the way you hope, but as Court says screening is really vigilant so things are discovered quickly.
I've had lung nodules for about three years. They seem to grow very slowly.
My tumour (2021) was also Sigmoid (but stage 3).
If possible aim to be positive. There are so many fantastic treatments and options available. Plan fun things to do, not horrid thoughts! (Sorry, easy to say, but know it's hard!)
All the best
Nettie123
Hi Kj64 & APT,
Following bowel hemicolectomy in 2019, I too was diagnosed with lung nodules the following year, during a ct scan.
In my case, I had oral chemo for 6mths - which slightly reduced the size of the nodules - that were 5.3mm & 3.7mm - which enabled me to have lung ablation - which is a very simple, non invasive procedure.
If your team talks about the possibility of having this - to either of you. I will be happy to answer any questions you may have about the procedure.
I know it's hard, but try not to get too anxious at this stage - as various treatments can be offered to you - as court has throughly explained to you.
Also, try to remember, that those sizes of lung nodules - are similar sizes to peas!
Many best wishes
Marianne x
Thank you Marianne
I am trying to be more positive but my anxiety levels are spiralling out of control at times. I have spoken to a MacMillan nurse yesterday who made me feel more in control. She advised me to call GP and colorectal specialist nurses who were not empathetic and dismissive (I have not asked for help from these services previously). I have agreed that mirtazepine may be an option as I am creating symptoms that are not there.
sorry for the ramble.
KJ64
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