HI all,
I love reading all the positive comments from everyone on here.
I was referred to the One Stop Shop at St Thomas' in September to assess whether chemo and surgery or just surgery was the way to go when I received the devastating news that the PET Scan had picked up metastases in my liver which had not been seen on my Ct scan. No surgery and referral for palliative chemotherapy only.
The consultant Oncologist floored me not only with his prognosis but also the cold, blunt way in which he delivered it. Thankfully the lovely oncology nurse reminded me that his data is based on averages and that I am not average ( age, general health, active lifestyle, great support from family and positive mental attitude all being on my side).
Just starting my fourth cycle of CAPOX treatment I feel better than I did before I was diagnosed and am suffering minimal side effects, still working and coming up for a review with my oncology consultant - thankfully a new one - early in the New Year.
After all this preamble I guess what I really want to know is whether I could be looking at a reversal of any of the existing tumours or the best I can hope for is no further spread? I know we are all different and have different experiences but I would really appreciate hearing from someone with similar experience to mine.
In the meantime I wish everyone a Merry Christmas and all the best in the New Year.
Hi Angie
How you both doing?
Saw your bit on consultant being blunt with you. I had a registrar explaining my diagnosis and I wouldn't say he was blunt but I guess told me the plan in shall I say black and white, no glossing over just telling me straight.
I think they have to be a bit like that so there is no confusion or false hope given to the patient as to what they are facing.
I agree it can sound harsh but I guess that's how they do it
I do hope you get good news when you see him. Always here for you both
Dean
Hi Dean
That's good news for you then. I wish you all the best for the future.
Yes all the waiting has been agony. Initially they thought mine was contained stage 2 but then found out after MRI and PET scan was in the liver. Devastating but trying to stay positive.
Take care.
Carole
Hi Carole
Thank you for your kind wishes
Sorry to hear your diagnosis got worse after your scans that must of been so difficult for you. You do have to stay positive, it is hard sometimes but these new chemo drugs can work wonders so I wish you all the very best for the future
Dean
Hi Carole,
How are you, how is treatment going?
We had our oncologist appointment today, my husband will be having 6 cycles every 3 weeks and tablets at home.
My husband is having terrible constipation at the moment, did you have this with the morphine?
Take care
Angie x
Hi Angie
Glad your husband had his oncology appt at last. Does his treatment start soon? I am having 8 cycles of Capox and tablets at home. Had a blip yesterday when I kept bringing everything up but fingers crossed this has settled down.
When I was having Codeine tablets I had terrible constipation, they even thought I had a bowel obstruction after 3 months of taking them. Nobody prescribed me morphine then. Anyway have got morphine now but I try not to take it very often. Ask his MacMillan nurse and they can recommend which will be the best constipation sachets/tablets to take.
Hope this helps.
Carole x
Hi Carole
Yes Codeine is not good I had the same problem. I didn't get on with morphine either so just had paracetamol then max dose and that seems to work.
After chemo have Omezprazole which seems fine too.
Starting my post op chemo next week at 70% strength so hopefully it will go ok.Im on FLOT which is through a PICC line is Capox the same?
Hope you are feeling ok now
Best wishes
Dean
Hi Angie
Pleased to hear your husband has had his oncology appointment. That treatment is different to mine so not sure how it will be for him. Like Carole says talk to your Macmillan nurse about the constipation as they will prescribe something to help because I know that's painful.
Had my PICC line in yesterday ready for FLOT chemo next Thursday, here we go again!
Hope your husband's treatment goes ok, keep in touch and let me know how it goes please
Best wishes
Dean
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