Oesophageal Patients Association
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Let the treatment commence!!

Hi Everyone.

A wee update. Husband has a diagnosis of: T3 N2 M0 today.

We are so relieved that it's M0. That's what we were most worried about. The N2 are all in the same area as the tumor so that's also positive. Although it would've been better if if was N0 or N1, but it is what it is.

They main thing is that the cancer is contained fo the moment. We meet with the oncologist on Wednesday and treatment will commence 2 to 3 weeks after that.

The plan at the moment is to go with the ECX regime for 4 cycles then a break of 3 to 5 weeks before "the op". No chemo is being done post-op as they have found that people are simply not able to cope with it so hence the 4 cycles before hand.

Husband is highly motivated to get these "fcukers" (lymph nodes) blasted and the "bar steward" (the tumour) cut out! 😁 Luckily we haven't lost our sense of humour through all this which I think is helping - a lot!!

He is continuing to put on weight too which is excellent. All in all we are in a much better place now we have a plan and next steps.

Will keep you guys updated if that's ok.

Thanks L

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Your positivity shines thru. Good luck 😁 x

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Thank you. Yeah we are being as positive as we can. Just glad things are moving along now.

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Lucy

I had the the almost identical results and treatment as your other half. including the ECX, pre' & post operative. With the surgery (in S Thomas's) in between.

You are now both passengers and have to sit back and enjoy the ride ;^). The chemo is the 'hard miles' but you know you are going to survive that. You must keep this at the front of every thought and every down moment "I Will Survive" Maybe buy the Gloria Gaynor Record to have in a loop.

From my experience of the ECX:

You cannot drink enough water, even when you have drunk enough water. Keep drinking. De-hydration is constant and you don't always feel it, but you will certainly notice the impact. Drink water by the gallon.

Do what the nurses tell you to do and sleep whenever you can. Like the water you cannot and probably will not sleep enough. Sleep is good anyway. It makes the days go until the magic day of surgery arrives.

Stay positive. Everybody on here on here will tell you this because it is true. Kick the shit out the cat or the dog (maybe buy a stuffed bag or something) do anything, but stay positive. Neither the cancer or the chemo will win if you can you do that even when you it is the last thing you may be feeling like.

Post on here. People will respond.

Good luck.

XX

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Thank you Bruce.

We both came away from the hospital in a much better way than we went in which is weird as the cancer is still there, but the consultant did say the plan was to cure. I remember in my early days of posting here you saying that little 4 letter word gave you such a boost and boy did it? I got the consulting to reapeat what she said and I wrote it down in my note book too. I didn't just make it up.

Interesting that the chemo regimes although similar are different. They are not planning on giving husband any after the operation instead he will get 4 cycles before the op as opposed to 3.

We are under no illusion that it's going to be a tough slog for the next while, but at least we known it's treatable and that's all we were hoping for. Prepare for the worst and hope for the best!

I must thank you again Bruce for your extremely informative responses you give. You're like the Oracle on everything OC!!😊

All in all it was a positive appointment yesterday and we both feel like a weight has been lifted somewhat. The consultant and the rest of the MDT were extremely positive too which is also very reassuring.

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Lucy

Your attitude is 100% here.

Seeing my Oncologist tick the box "CURE" was the best thing I had seen at that time. They only do this when they truly believe it to be so. You have every right to be positive.

FYI: Some people, seem to sail through the chemo and you may find that your hubby is one of these. Please do not stress on my experience but focus on the next stage "Surgery".....

I can honestly say with hand on hear and nothing crossed behind me!!!! Mine wasn't too bad. I have since had to invent completely made up stories of bravery to impress others. I mean, you go in there, you lie down, you fall asleep and you wake up!!! Done...

I wish now I had asked for bigger scars to frighten kids away.

We have the best and the kindest nursing staff you could get. I felt blessed to have their attention and honestly missed them when I was discharged.

I wish you both well.

I am now off to play eighteen holes of golf (second round this week) with my Father in Law who is recovering from Prostate Cancer - Wimp. We make a great pair with me laughing his constant need to pee and him laughing at my creaky spine.

The sun is out, and so are we. What more could we ask for.

XXXX

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Lucy good luck to you both I have been thru it too three years ago like Bruce - just keep away from infections runny noses etc as much as you can as your husband's resistance to infection will fall as his white blood cell count falls with the treatment.

Have a dental checkup too - better dental treatment now if needed than when on chemo !

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Thank you Mark. Good advice about the dentist. As it turns out my husbands crown came out not long after we got the diagnosis so he had a trip to the dentist. He was great and gave lots of information about oral health during treatment and if husband had any issues to contact te practice straight away. The suggestion was for the crown to be removed along with the tooth to prevent infection. So that's happening on Tuesday. Its all going on in the house just now lol but we'll get there.

Thanks again

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Hi Lucy, great attitude!

I am 18mths post op and doing well. My advice to you is to get yourself a notebook to write down how he is feeling each day on chemo so you can get a pattern of what to expect each round. Build the weight up before op as much as he can as most people lose on average 3 stone. Have short breaks away if possible whilst on chemo to make you both feel better.

Break things down into bite size bits ,concentrate on the chemo first!

Positive thoughts

Debbie

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Thank you Debbie.

We are all positive.

Hubby is trying to put on weight as much as he can but he's on a purely liquid diet as he cannot tolerate solid foods at all just now. So we are hoping that during chemo the tumour will shrink a wee bit and maybe facilitate eating "normal" again before the op..

Thanks again for your advice. Much appreciated x

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Hi Lucy,

I'm so glad you had some positive news. It's so much better once you feel you are actually doing something. My husband's diagnosis and treatment plan was much the same. He only had 3 rounds of chemo which he tolerated very well other than his hair thinning and feeling tired. He was supposed to have post op chemo but was "timed out" by his extended hospital stay. I do remember the immense relief when his surgeon said he was aiming to cure him and not just extend his life!

Good luck to you both - remember to take one day at a time and to do some fun things whenever you feel able to.

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Hi Lucy,

It's positive news to hear that your husband is able to have the operation. With my Dad (56) we were given a few different inconclusive biopsy results at first so we were unsure what was going on, but when we found out that it was cancer, (which we all knew anyway) we celebrated the fact that it was operable.

My Dad began his treatment in January, also ECX chemo (3 rounds) and then in May he had the Ivor Lewis. He began post op chemo in July, which was supposed to run alongside radiotherapy, however, he handled one round of post op chemo but they decided to call the further 2 rounds off as his bone marrow and blood count has been too damaged.

He has however, been able to continue with the 5 weeks of radiotherapy which finally comes to an end on Friday.

It has been a tough road. Be strong, be positive and keep hoping for the best.

My Dad has the exact same staging T3 N2 M0.

Feel free to message any time.

Amy xxxx

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Thank you Amy. That's very kind of you to offer.

We meet with the oncologist on Wednesday so I guess we'll know more then. Currently from speaking to the consultant and the specialist nurse the plan is 4 rounds of chemo pre-op then nothing afterwards. But this is on my list of questions for Wednesday. My notebook comes with me to every appointment lol.

Husband is highly motivated to get on and get things moving and he even managed a bowl of creamy pasta follwed by cheesecake for dinner this evening. Something he's not managed in a few weeks, he's been on nothing but liquids for weeks now.

You'll be glad come Friday when the treatment is finished.

Best wishes

L x

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I hope he is prescribed an anti-emetic ..... I had Ondansetron which was excellent, hardly even retched despite 4 rounds of Cysplatin (post op) and my white cell count falling to zero.

Wishing you both the very best of luck.

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Hi.

Yes the hospital will issue and anti-emetic as standard along with all the other medication too.

Thank you

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