Hi,
I have recently been diagnosed with oesophagus cancer stage 3 and have come across this forum while googling, since the middle of September, I have had a plethora of tests and have been very well treated by the hospital staff, I’m starting my FLOT treatment in 9 days’ time a regime of 4 rounds 2 weeks apart then hopefully followed by surgery and then another FLOT regime.
Hi guys.
Sorry I have not followed up my original post before this - things seem to have moved on so quickly I have hardly known whether I am coming or going. To precis the last couple of months, my oncologist took me off my chemotherapy as I was just not dealing well with it. Really unpleasant nausea and a significant weight loss (9kg) persuaded him that the chemotherapy was not effective, even at 75% strength, and so it was stopped after just 3 cycles of FLOT. Still managed to lose most of my hair, so at least I saved from going to the barbers.
So, all stopped on 4 April (68th birthday), with a promise that they would try to bring forward the surgery. They were good to their word, and I went into hospital on 27 April for the operation. This was a total removal of the Oesophagus (Ivor Wilson?) Procedure which as well as removing my little tumour at the junction between oesophagus and stomach, but also evicted my Barratts as well. Apparently, it was 7 hours 20 minutes on the table, and my surgeon has declared himself very happy with my result. I have also managed (so far) so escape from hospital after only 10 days.
There is always a 'however', and mine really started after getting home. Seemingly endless nausea, even with constant anti nausea pills. The worse part of this has been not being able to be physically sick. Wretching with no end product is never very nice, but I don't seem to be able to do this from my stomach, presumably because it is now an oesophagus.
I have had my first follow-up appointment with my surgeon, and he has told me that he sees no need for any more chemotherapy as 'we got it all!'. When I asked about the Barratts Oesophagus, I was happily told that it was in the bucket on the floor with the rest of it . My only other worry has been a constant weight loss, which in any other circumstances I would have been delighted with. Since 1st March, I have managed to go from approx 19 stone to now only 13st 2lbs. I can only think that this due to a lack of appetite and an inability to eat as much as I used to do. I am not due for another scan which surprised me as I thought that maybe a PET scan might have shown that all of the nasty little cells had truly been evicted or destroyed.
If anyone can shed any light on eating habits, or nausea relief, I would be so grateful for any advice. Other than this, I do feel tremendously lucky to have been looked after so well by the NHS staff at my hospital; they were, without exception, truly brilliant.
Sorry for rambling on a bit. Still keeping the faith ️
Snaggie
Hi Snaggie-
Well you did it ( 100's of clapping emoji's)
NOBODY on here goes on- it is a way of processing what the **** has just happened!
they got the lot then yay.
I shouldn' t worry to much about having 3 chemo's . The stuff is vile , FLOT is hard core. . My husband had to give up on the O part- oxyplatin as he had a great big anaphylaxis! As it goes, one is better than none, 2 is better than one etc etc.
He is now 2 years since diagnosis, 18 months post op and 15 months post anything.
I think it would be fair to say that everyone on here has suffered with weight loss to varying degrees and problems with post op eating& dumping syndrome.big weight losses come post op, essentially you don't have a stomach anymore):.
my husband has suffered with clogging- not from a return of the unwelcome guest, but certain foods ( carbs mostly) tend to hang around in the re constructed oesophagus ( what was the stomach), so would cough A LOT and hawk some back. He has kinda worked out now what he can get away with, but still does 'fancy' somethings that he knows are going to not be much fun- but does it anyway!!
he has just stuffed a Cornish pasty! Without much of the pastry, but he is good with meat and fish, curry, and especially beer!
I would say it is pretty standard to lose appetite- your brain telling you " why eat something , if it is going to make you sick" All I can suggest is maybe a dietician and just literally graze all day with anything you fancy. My husbands weight loss stopped after about 6 months- he's pretty stable now.
He has had a lot of coughing since the op- had a few scar tissue stretches to help with clogging, BUT turns out last week that no medic had listened to his chest and low and behold a chest infection- so fingers crossed gone for now.
As for the scanning and checking- we have found that a bit weird too. Although he has had CT scanning because of the coughing ( didn't do the simple thing like listen to his chest though). It seems they only scan if any 'worrying symptoms' turn up, and PET scanning is only reserved to see how confirmed cells are behaving. I know what you mean though, it would be nice to have a monthly one (:
You were only done in April, so still very early days (: . It is a slow creep back up, but you will get there. Husband took really about a year.
so keep keeping that faith
Hilts x
k
Hi all,
Snaggie, first no need to apologise - you have been kept busy since your last post and posting on here is non judgemental.
I am very pleased that you have had the Oesophagectomy (Ivor Lewis) we won't give Ivor Wilson the credit lol. It sounds a good resul. You are still early in your recovery so it's going to take time to settle into your digestive system. Because my husband had a series of complications he was in hospital for 5 weeks home for three then back in for another op. So by the time he came home it was over 2 months since the first operation. He hasn't suffered from nausea but he has had dumping syndrome which he still gets intermittently. Re weight loss my husband lost two and half and was around 12 stone 11 pre op. He has managed to get back up to around 10 stone eight or nine. Most people do lose quite a lot of weight and muscle. He takes dioralyte to replace salts etc after a dumping episode. These are less frequent and sometimes he knows why eg eaten too much but sometimes no obvious reason. If your weight loss is concerning you I would suggest that you contact your upper Gi nurse for advice. Scans don't seem the norm with this type of cancer which is hard in some ways. We all want someone to tell us everything is OK but from what we have learnt they only scan/test if necessary.
Ofhers on here may be able to offer advice.
Tippo nice to hear your op went well. Yes food poisoning after this type of surgery must be worse and it's not good at the best of times. As you will see on here weight loss seems compulsory but by varying degrees.
Hilts hope your husband is still cough free and you are enjoying your sports car in this lovely weather.
I hope everyone else is doing ok on their own paths.
Still keeping the faith for everyone
Milly
Hi Hilts,
Well I had to smile when I read your reply to Snaggie as we have both replied in a vary similar way! I started to reply earlier but kept getting interrupted lol. Anyway good to read your husband is still doing well and no cough!
This time last year Kev was very unwell and not able to walk very far at all so this years Father's Day is much better.
still keeping the faith
Milly
Well done Snaggie, that's fantastic news !
Hilts, so good to hear you've got to the bottom of your Husbands cough, and sorted it !
Milly, hope Kev had a great Fathers Day and that you guys spoilt him rotten !
Lee, my Dads place is in Fuengirola but when Spain opens up its borders to us unvaxxed folk, I'll be back over there and will definitely shoot across the coast for a few Sam Miguel's and raise a glass to your Dad with you
Andi, did you make it Ice Cream shopping yet ? My 2am Hagen Daas or Cornettos, as prescribed by my surgeon to aid the post op weight gain still make me chuckle when I wake up for the loo in the night and then sit on the sofa chomping away at a bowl of ice cream !
Its helping though, the weight is coming back on which I didn't think possible after having the whole stomach removed !
Keeping on trucking and feeling grateful that my surgeon has kept me around to celebrate another Fathers Day with my kids, yesterday.
Hi everybody, Distraught here but now, glad to say, I am cauitiously optimistic. Not wishing to bore everyone, but here goes with the latest update.
Surgery went as planned, histology was very good. Surgeon said she managed to remove the relevant section (with good/clear margins) and turned out, lymph nodes were clear and therefore, left intouched. He was in critical care for longer than expected due to a clot on his lung post op and is still on powerful blood thinners now as a result, which has to continue for 6 months post surgery. Total stay in hospital of 7 days.
He has had some pain in the shoulder from the surgery, controlled by paracetamol, and can now eat small amounts of almost anything provided it's not too heavy/stodgy. He's lost a small amount of weight since the op but nothing drastic. He's having night time feeds via the pump only since having the second dose of FLOT as the chemo seems to be affecting his ability to eat as well as he was.
We have today reached a milestone, having seen his consultant on Wednesday and discussing the pros and cons of continuing with the FLOT for all 4 cycles, in as much as he's decided to stop now and not to push his luck any further. He's had the side effect from the chemo of pins and needles and general lack of sensation in his hands and especially his feet, which at one point led to investigations into whether he'd suffered another stroke. (OH had a stroke approx 2 years ago, from which he recovered well - only left him with relatively minor problems he learned to live with).
We have come to the conclusion that it's a question of risk -v- benefit and the risk of long term nerve damage to his hands and feet outweighs the small percentage increase those final two FLOTs give the patient of the dreaded big C returning. Only time will tell if this turns out to be the right decision but given the pins and needles etc have gradually worsened with each cycle and the advice of the oncologist that this is often one side effect that doesn't right itself after chemo ends, he's decided to err on the side of caution and take his chances.
There is no right or wrong here I know and this has been a difficult choice. If it were just a case of grin and bear it during the next 2 cycles, then no question he would have continued with all 4 but as this side effect could potentially affect the quality of life drastically and permanently for what is a small percentage reward has brought us to this conclusion.
So, this is it. Treatment ends for the time being and we are (thanks to our wonderful NHS) now in a far better position than I would have dreamed of last October. Everything crossed now that it's worked completely and it doesn't rear its ugly head again.
A big thank you for the support from all on here who really helped when i needed someone to share this with and with people who truly understand as no one else can
Many, many thanks
(Cautioously optimistic - formerly Distraught)
Hi Cautously optimistc!
I just logged on as it's been quiet on here which I hope Is a good sign and there was your post! Fantastic news and there is no right or wrong re chemo it is so individual. As you rightly said risk v benefit plays a big part in the decision. I'm delighted that they got it all and no Lymph nodes too! Fabulous news. Yes our wonderful NHS do their best to give everyone the best care. As we all know sadly not everyone has the same outcome but I'm pleased our OC group helped you at your most desperate time.
My husband continues to make progress fingers crossed. A year ago he had just had his 3rd operation in eight weeks. Your husbands stay was short which was good. My husband lost 2 and half stone but is very slowly increasing.
Sending thoughts and positive vibes for your husbands continued recovery.
keeping the faith
Milly
PS hope everyone else is doing ok and you made it to Turkey Andi
Hi,
As you rightly say, not everyone has such a good outcome. We appreciate that in that way, he's one of the fortunate ones (so far). It's certainly made us think differently about future plans and not to take things for granted; something we are all guilty of from time to time. Nothing is certain in this life and from here on in, we will certainly be making te most of what we have while we can.
Leading up to Christmas last year I genuinely thought his number was up He looked dreadful, the weight had fallen off him, he had no energy and couldn't even keep a glass of water down. He ended up in hospital all over Christmas almost to New Year being fed by nasal tube, starting chemo in January. After the 2nd FLOT, he never looked back.
I don't really have the words to explain how grateful we are to all concerned in the health service who have all been first class. He's had the best treatment given by a great team of dedicated, caring people and they have given him the best possible chance of coming through this long term. He was unlucky to get the cancer but his reaction to treatment has been better than expected, so lucky in that way.
Off now to do my online shop. Stocking up with high calorie, high protein food and the ingredients to make vast amounts of trifle (his current favourite)
Thanks again
Cautiously Optimistic
Oh wow that's amazing that he's responding to the chemo . my partner has now had to change to new chemo as tumour getting bigger . They want to offer radiotherapy now I hope this works . He's on a feeding tube which isn't working, leaving him hungry all week xx I hope and prey he gets sorted he's had enough now .
Enjoy your triffle
Take Care each xx
hi distraught
i have not been on here for a while and am now 2years post surgery , the shoulder pain is a vagus nerve problem and will go away in due course as for the neuropathy in the hands and feet it will reduce quite a bit but personally i still have it and i am always feel cold in general, on another note has anyone on here noticed their voice has become different , maybe slightly hoarse or huskier or weaker mine certainly is but not all the time , anyway take care and i think two years from now you will be in the same state of health as i am now which is excellent
Regards
Douglas
