I feel like I'm being a real worry-guts, but saw my oncologist yesterday about starting my post op FLOT. I'm currently almost 7 weeks post op but have anaemia (being monitored and treated) and some residual post op pain in ribs. My surgeon recommended post op FLOT to start after Christmas, and seeing my oncologist yesterday she agreed.
However, my start date will be 11 weeks post op. The recommended start date is 6 to 12 weeks. Obviously I'm still within that time frame, but only just. Am I right to worry? I'm thinking of asking if I can start it earlier. What would you do, or have done? How soon after your op did you start FLOT again? I'm absolutely dreading it, as it's so tough and the side effects are awful, but it's the final hurdle and I want it over with. Thank you.
Hi Nicky,
Sounds as if I'm a little in front of you down the treatment path. I was six weeks post op to chemo start.
I too didn't want to go there after the first four rounds and side effects. But you have to give yourself the best chance you will get over it.
I'm starting my third cycle on Friday so just two more to go. I've been feeling shite this time around and got a point where I was going to pack up. However, I saw a young boy on the TV news called Hughie and his friend called Freddie. Hughie was about twelve or so and had been on many treatments over three and a half years but had received the all clear. I was so ashamed of myself, his story inspired me to carry on.
Go for it, give yourself the best chance possible. So what that it makes you miserable while your doing it. You'll get over that in a week or two.
Take good care of yourself.
Best regards
Geo.
Thank you Geo, I appreciate your time to reply.
I heard from my Macmillan contact this afternoon, and what she said was interesting.
She'd spoken to two of their oncologists about the pros and cons of a later start to post-op chemo for me, and both oncologists agreed that in my case I'd be better off leaving it to 11 weeks, rather than now. The reason for this is that I will be fitter and stronger after 11 weeks and should be able to tolerate more rounds than I could do currently. She said ultimately the outcome will be better to have, say, 3 or 4 later than just 1 or 2 now. I feel reassured at that, so am happy to wait a bit longer. They're the experts, after all.
Can I ask, Geo, did they give you a margin of being clear after your operation and post-op chemo starting? I was told I was clear with a 0.5mm margin. They did explain what that means, and were initially saying I wouldn't need the chemo again, but then changed their minds and agreed to it (I'd have requested it anyway, for peace of mind).
My husband is starting post op FLOT next week after his op on the 19th September so it will be nearly 10 weeks from his op. He did have a problem a few weeks after the op and was readmitted for a week and had to go on overnight feeds but he is doing really well now. His pathology came back with no cancer cells found in any of the samples or lymph nodes that were removed which is fantastic news and just shows how effective FLOT can be. However, the surgeon still wanted him to have 4 rounds of post op chemo just to be on the safe side.
Hi NickyF
My dad had his surgery on July 18th and started his post op FLOT on Oct 10th, so just within 12 weeks. However, dad chose to stop his post chemo after 2 cycles. It was totally his decision and the nerve damage to his feet was taking its toll ( and still continues to bother him) and he just simply had had enough of the treatment. Everyone is different and has to do what is right for them. I think dad would've carried on if he felt he could but he started to feel changes in his taste too and he struggled with that the first time.
In effect dad is now just getting on with his life, which seems a little scary after all the appointments he's had earlier on. All his margins looked good after his surgery with no cancer detected in the 38 nodes they removed which is amazing. We just have to hope and pray that the 2 cycles were enough to keep it away. Nothing is ever certain, but we have to try and be positive. He has the first of his monitoring appointments in January where he'll meet with his consultant. He's having his jej taken our next week so that will be another step forward.
I wish you all the best with your post op chemo and hope you don't suffer too badly with the side effects. Take care.
Hi Nicky I'm a bit behind you as my op is in December and I won't have more chemo until next year.
As you know the side effects can be horrible so I guess you need to decide if you feel strong enough to start again after your op. I was Anaemic too at start of my 4 rounds but that improved towards the end. I have iron tablets every day too so that probably helped as well.
I would be like you just want to get on with it but take your time and see how you feel
Best wishes
Dean
Thank you, that's very reassuring for me, and I know it must be fantastic news for you too. My margins were clear, and 2 nodes nearest the tumour were positive, but they removed the lot anyway. At first he said no further chemo for me, but I wanted it anyway so was glad when he changed his mind. I feel reassured over the wait time, so thank you for your reply.
Thank you for your time Dean. I will definitely be taking the chemo, there's no question of that as it'll help mentally knowing they're mopping up any stray cells, as well as physically just in case there is. I'm happy with the timescale now I've spoken with my Macmillan contact as she'd spoken to two separate oncologists yesterday, who reassured me that it was safe to wait, and in my case in fact beneficial as I'll be more recovered from the operation.
Wishing you luck with your operation. It's a big hurdle to get over, but does go quickly. Literally waking up after it was done was amazing... harder for family waiting to hear about you, as you'll have no conception of the 8 hours.
Nicky
Can I just say congratulations on your journey so far, when I first posted on here, you were waiting to have your op, having come through your pre op treatments. You answered my first post as it reminded you of how you felt at the beginning, worried, dark hole and you told be I would feel better once I was told. Your words were so supportive that I went on to have my 1st peaceful sleep.
So I just want to say, glad to read the op went well and you are now 4 treatments away from “DONE”
Take care. Jennie
Hi Nicky, Yes I know the op is going to be a big step and probably the most difficult part. I'm more concerned for my family and for how I will feel physically after the op.
I'm pleased for you that everything went well and that you are nearly there. The advice and encouragement on this forum really helps me and I'm always managing to stay positive.
Also I have every faith in my surgery team Mr Simon in Churchill Hospital Oxford. He is a world leader in these types of ops.
Wish you all the best too
Dean x
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