Oesophageal Patients Association
3,735 members2,253 posts

Chemeoradiotherapy

I.m having chemeoradiotherapy before Ivor Lewis op can anyone tell me how I,m going to feel I,m feeling very fearful and overwhelmed by it all at the moment how bad is it all going to be

45 Replies
oldestnewest

hi molly i can only offer support from here read about your condition and op sounds big op for you but outlook good have you family around you

Reply

Thanks for your reply I,m just trying to get through one day at a time I only found all this out on Friday so it's all come as a shock . I,ve had four endoscopes and biopsies over the last twelve months and told I had low grade Dysplasia then I went for a eus and pet scan and this is when it's all changed to high grade Dysplasia and a lump which is probably cancerous so it's a lot to take in I have an appointment on Tuesday with the oncologist so things will hopefully be explained to me then . Does anyone know if this tri modal treatment is a cure .

1 like
Reply

healthunlocked.com/oesophagus hi molly hope we can help but i fairly new myself but there are some very knowledgeable peeps on here there is an esophagus room will try to get link for it and give it to also top left theres my hub it may b in that will go and look

Reply

Hi Molly I've just finished 25days of rads with 5of chemo. Am70 female and treatment curative.. 3months on all clear but very aware may progress to surgery if reappears. Was OK til near end then got painful and couldn't eat lost lots weight but soon as actually asked for help was given ormaphorph bounced back immediately.. Its was toughest 10 days AFTER rads ended. Was very tired quite weak but made things worse for myself with stiff upper lip and not wanting to be a nuisance. But it's short term and I'm glad I started the fight back x After 7 weeks the Berkshire Cancer Centre felt like home with wonderful support. I wish you well.

Reply

Thanks for your reply I hope you don't mind me asking why you didn't have the operation I asked my consultant and he said they do tri modal. chemeoradiotherapy then the op I asked if I could have the chemeoradiotherapy without the op but he said the best approach was all three. Glad to hear alls well for you now .

Reply

The stats for outcome were similar, I have the squamash tumour which can respond I think to this as a cure. Rarely but does happen. But the odds of reoccurrence are frighningly high I know. I'm less frightened of the op now and it is on offer possibly if and when reoccurrence happens. Who k ows then. At mo I'm well and having wonderful days with my family.. whatever the end result this treatment was worth everything whether tri modal or stand alone for the quality time it has given me and the feeling of standing up and fighting back helps so much. No two cases are the same.. My consultant just agreed with my argument.

Reply

Hi, are you having surgery as well?

Reply

Hi Molly I am 7 months after chemo and ivor Lewis op. I found the chemo manageable before the operation but needed the support of my family as it was very tiring by the 3rd infusion. The operation is tough but I had an excellent team at st Thomas's who were amazing and helped me through. All I can say is take it one day at a time and try and keep a positive mind frame as I think this is so important. Everyone responds differently to the chemo so it's hard to say how you will be but some people sail through it. I wish you lots of luck

carol

1 like
Reply

Thanks for your reply I,m trying to be positive but sometimes it all gets a bit overwhelming. How are you now 7 months after your op are things going ok for you. I see the oncologist tomorrow so should be starting treatment soon did you have radiotherapy as well as chemeotherapy ?

Reply

Hi Molly

I had 3 infusions of chemo before op and then 3 infusions after op though I could only manage the first infusion after the operation and then had to stop.

7 months on I am back at work though only 3 mornings a week and getting on with life. I still have bad days where I struggle to eat due to reflux but I also have really good days. My life will never be the same but I am getting used to the new me and I'm so grateful to have been given a second chance. There may be times over the next year when you feel it's all too much but then think of me and the others on here who have done it and are out the other side that will be you soon so stay focused on getting better.

love Carol

Reply

Hi, I am having the surgery in December, I was wondering if you were able to go up and down stairs when you first came home from hospital?

Reply

Hi

Yes I could get up and down the stairs on my own once I was home. The problem I had was being able to get in and out of bed on my own. Other than that my advice is to keep up the breathing exercises as this really helped and also the exercises the physio gives you to do. When the operation is first done they will get you up straight away and you will not feel like you can do it but you can. Remember keep that positive attitude and be determined to get better this really helps. This operation is hard but you can do it and your life will get better. Go for it. I send lots of love

Carol

1 like
Reply

Thank you Carol, I have an electric bed on order so hoping that will help with in and out of bed. One day at a time!

Reply

Good idea. If you have any other worries or questions just ask.

xx

Reply

Hi Molly, sorry to hear your news. Yes it’s a shock isn’t it. I was diagnosed with a cancerous Tumour on my Oesophagus on April 18th this year. For some reason radiotherapy wasn’t an option for me. Maybe my Tumour was too near my heart? My Oncologist was quite brutal when he told me about the 2 month chemo treatment. He gave me the worst case scenario saying I would be sick the whole time, mouth ulcers, weakness. Told me the first week I would be really bad, second week would be awful. Third week and I would feel a little better the bam.. we hit you with it again. I was petrified. I’m sure everyone is different but that wasn’t the case at all. Yes I felt ‘nauseous’ but it was quite manageable. No mouth ulcers or any other real side effects. I must have been lucky. I didn’t lose any hair at all. The actual 6 hour infusion in hospital was very manageable and didn’t bother me at all. In fact, strange thing to say but I ‘enjoyed’ it being surrounded by people going through the same thing. Yes there are times when you are about to take your pills at home when your body says ... why are you poisoning me? But push through day by day. My chemo was so successful, they couldn’t even see the tumour on the PET Scan. I had my operation on the 30th August. 8 weeks later and not very sensible but I went to a music conference in Amsterdam. Your eating and drinking habits have to change. I’m eating about a third of what I used to eat (and drink). I’ve lost 2.5 stone and look better than I’ve looked for years. My head has NEVER lowered. I was NEVER going to let this get me and it hasn’t. My surgeon and oncologist said I was the most positive, happy patient they’ve had for years. I was given the all clear a few weeks ago and I’m glad to be alive. You can do it to. I’m here if you need anything else. You CAN beat this Molly. Xx

Reply

Hi Molly, I had Chemo before and after my op.

I didn't suffer many of the things that are possible.

I didn't loose my hair,it did turn grey though..well more grey than it already was.

The only thing I suffered with was feeling sick, I could not go shopping as the thought of food made me feel like throwing up.

Everyone is different so don't worry about it.

You will be fine and good luck with your op 😁👍

Reply

Hi Molly, I'm 8 years on from chemo and the op, the chemo is different for us all, I was sick and nauseous my friend 2 doors down who was going through the same treatment walked it and drove himself home from every appointment! Do ask the chemo and radiotherapy people for help if you are finding it tough, I went to Southend and queens they are a fabulous team .

The op is a big one but you do get better albeit one little step at a time, the help and assistance available for any hiccups or problems is normally great and the support on this site is also good.

Take a friend to the appointments with you and if you have a smart phone ask to record it so you can listen to it again , it is a big shock and a lot to take in in the beginning good luck, hugs Lizzy

Reply

Hi Molly

Having read all your replies, I agree with them all, I had just chemo, no radio and it was a very rough journey for me, BUT now 4 months after the Ivor Lewis op I'm getting on very well, I have been given another chance and I am taking that with both hands.

At 74 and a guy who used to eat very well I'm now still very much enjoying my food but in smaller portions, not only enjoying food but also my new lease of life, yes I have lost 4 stone over this year and am not likely to regain it but it suites me and I am happy.

Go on your 'journey' take the up and downs, look to all those who have gone through this and come out at the end with a new lease of life, this is your future. I was afraid, I'm sure we all were but go for it, it will be worth it.

One final note is that all the teams looking after you are the best, they care and want to see you back enjoying life. At the Queen Alexandra in Portsmouth they were fantastic, they could not have done more, so go with them and trust them.

The Ivor Lewis is a cure, following my op I was given the all clear with all of the cancer removed.

I also wish you well on your journey to a full recovery.

Jeff

1 like
Reply

Hi Molly,

nearly one year ago I (T2NXM0 squamous cell carcinoma) started my chemoradiotherapy, 4 weeks daily radiation and 4 weekly infusions of carbopatine and taclipaxel. Then a break of around 8 weeks, surgery mid February.

I remember how all this scared me. After diagnosis I was torn between the thoughts 'there's nothing wrong with me, I have no symtoms, diagnosis is wrong' and 'I will die in the next months, either from cancer or from treatment'.

So I understand your worries. Especially chemotherapy frightened me, you always hear these devastating reports. I found one clinic where I could have had surgery without chemoradiation, but two other specialised doctors told me, the long-term outcome was considered to be better with this pre-treatment.

As it was 'pre-treatment' the dose was not as high and not comparable to chemotherapy and radiation treatment alone for other types of cancers. Side-effects were minor: a slight irritation on the skin of my back from radiation and partly loss of hair (after finishing treatment) from carboplatine. I didn't suffer from nausea, on the contrary, I gained 2 pounds. (I got anti-nausea meds and cortisol, which made me hungry.)

I think I was lucky, but why shouldn't you be lucky, too? (By the way, I think many people only tend to write the bad things, those better off don't care so much about writing.)

In any case, as Lizzy said, take someone with you to the appointments. I was so nervous that afterwards I couldn't remember everything the doctor said, but my husband could!

As to the tri-modal approach in general: there are guidelines for treatment, which recommend chemoradiotherapy before surgery for oesophageal squamous cell cancer, chemotherapy before and mostly also after surgery for adenocarcinoma.

Once I had decided to do chemoradiation and surgery, I had pre-treatment in our local hospital, surgery, however, in a specialised hospital 240 km away from home. Follow-up is now organised by the local hospital. Guidelines recommend as to surgery to chose a hospital where oesophagectomy is performed regularly.

I hope this helps, best wishes,

Monika

1 like
Reply

Thanks so much for your reply I think I,m having the same treatment you've had I know it's squamous cell and the nurse said 4 weeks of treatment then a break then surgery glad everything's now good for you I.ve feel a bit more reassured after reading your reply thanks

Reply

Can I ask you did you lose your hair this is another thing that upsets me if you did how did you cope with it ?

Reply

Hi Molly,

I didn't lose my hair during treatment, it began to fall out about 4 weeks after finishing chemotherapy. It's a side-effect of carboplatine. BUT: Others didn't see that I had lost part of my hair. It's normally very dense, and there was enough left. I suspect that these four injections were not comparable to e. g. breast cancer patients, who get chemotherapy for much longer than 4 or 5 weeks. In any case, hair will start to grow again after a couple of weeks. This shouldn't worry you too much. (Although it's of course frightening as everything after diagnosis.)

Best wishes, keep us informed.

Monika

Reply

Hi Molly, chemo was not for me! after one week they had to stop as I was loosing weight so rapidly? apparently one person in a hundred cant tolerate chemo?

I was diagnosed with stage three esophageal cancer, taking this into consideration I'm not doing to bad three years on!

I'm back to work doing nearly 40 hours a week but its not easy, life is certainly a bit tougher but you become a more resilient person as you instinctively "FIGHT from within?"

Everyone is different, our pain tolerance! our mental makeup! some people appear to be fine when they are actually in a lot of pain?

I personally listen to a lot of music using my I-pod blanking out any ambient noises around me. I found the best way to cope is "Distractions?" whether it be listening to music or getting on with the things you love in life?

Good luck.

ray

Reply

Thanks so much for all your replies I,ve been feeling weepy most of today but after reading all the replies I,m feeling a bit more positive I,m still frightened but knowing other people have gone through this and been successfully treated has made me feel better does anyone know how soon treatment starts after you've seen the oncologist x

Reply

Hi Molly,

you will go through this as well!

Alan wrote: 'In fact, strange thing to say but I ‘enjoyed’ it being surrounded by people going through the same thing'

That was true for me, too. Sitting next to other people getting infusions I felt that I'm not alone, nurses were very helpful talking also about other things. We were offered coffee and sandwiches ... Helps mentally.

I would start treatment as soon as possible.

Good luck and best wishes,

Monika

Reply

My appointment is tomorrow i.ll let you know how things go x I hope things move quickly a lot of the worry is all the waiting for results and appointments x

Reply

I had a month of radiation every day mon to fri for ten mins and intravenous chemo once a week for a hour or so for the same period, actually five doses. This was very successful good result and minimal side effects, but and this the big but, I supplimrnted the mainstream therapy with some high end natural therapy . Mainly a keto diet with intermitant fasting and high dose intravenous vit C and glutathione the night before the chemo. This stuff is common in Germany and Asia but not in U.K. And Aust Look up Dr Valter Longo and have a read about his work and look around for a good naturopath The other therapy I had was hyperbaric treatment Thete are community clinics onUK that operate under subsidy from MS society this was amazing as a feel good activity for increased energy

Good luck and remember it's your body and you have the right to do whatever you want with it don't be afraid to look outside the square ,it worked for me

Colin Jones

Mudgee Nsw Aust

1 like
Reply

I was diagnosed with squamous cell oesophageal cancer T3N0MX three years ago. I had chemo radiation followed by an Ivor Lewis op. I didn’t lose all my hair it just thinned. I had nausea and tiredness after the chemotherapy the radiotherapy made eating hard during the last bit. But the hospital managed the side effects brilliantly. I was given all the support I needed to get through it. The chemo wasn’t nearly as bad as I thought it would be. It was given weekly and by the time I was due the next dose I was feeling much better. The side effects of the radiotherapy improved quite quickly after about 10 days and by the time I had the op I was pretty well back to normal and had a little holiday to visit friends and family. I had my surgery quite away from home and despite some serious complications I did recover! All in all it was the cancer that suffered the most For which I’m truly grateful! I had amazing care was treated with unbelievable kindness from all the nhs workers I met.

Of course like you I was shocked and terrified when I received my diagnosis. The treatment is demanding but I’m sure you’ll get lots of support including from this forum. I do think giving yourself some little treats along the way is a good idea. Try and do as many of your usual things that you can but acknowledge that you might only be able to select a few for a while

But mostly all the best for your treatment and good luck!

1 like
Reply

Thanks so much I feel more reassured after reading your reply . How long did you wait after your treatment to have the op ? I don't know what stage cancer I,ve got I was told it was high grade Dysplasia but I think the doctor said the pet scan showed a lump it was all surreal at the time so I,ll have to try to find out more when I can . I,m just trying to take one day at a time but the trouble is I overthink everything . Glad you're ok now do you still have any problems from having the op ?

Reply

Hi Molly. I had to wait about 8 weeks between the chemo radiation and the op. I had my op in Plymouth as that is the centre for people who live in Cornwall. You need a gap between the two as the first treatment continues to work and one needs to build up strength. You need to maintain fitness as far as is possible ie walking etc. Like most people on this site I have had to make some adaptions especially with eating and sleeping. I am slimmer too! I have to be careful about acid reflux when lying down and bending. I teach pilates but can’t always stay lying on the floor. But there are other options so I have gone back to ballet. I’m 66 and is a challenge! I’m hopeless but love it. Like you I had a high grade displasia and while they were monitoring it with endoscopes it suddenly grew into cancer. I couldn’t wait to get rid of it! When I had the radiotherapy I visualised the cancer shrivelling up and me getting stronger it helped lots. Anyway here I am three years on struggling with ballet and amazingly if I come out of the fitting rooms when trying something on I have been greeted with the words “your so lucky to be slim....”. If only they knew why! So lipstick and a bit of flexibility in thinking work wonders!

1 like
Reply

Hi thanks for replying it helps such a lot to speak to someone who's been in the same situation I live in Blackburn and so my treatment will be at Preston royal i.m 65 and in pretty good health like you I try to keep active I do a lot of walking my oncology appointment is this afternoon so i.ll let you know how it goes I know there's going to be problems after the surgery but i.ll worry about that nearer the time . Thanks again for your reply please keep in touch x

Reply

Good luck this afternoon. It’s such a lot to take in. The walking and general fitness will give you a head start.

Reply

I,ve had my appointment with the oncologist and will be starting treatment in the next week or two everything was explained to me but it's still a lot to take in reading all the replies on here helps a lot it will be chemeoradiotherapy for four weeks then a break then surgery I keep thinking it's been found and they can cure it which is all good but I,m still finding it very scary which I know is normal any advice or tips you can give me will be much appreciated x thanks x

Reply

I know how you feel, I am just finishing my treatment and having my surgery in December. I am petrified about the surgery but thankful I can have it all in the same moment of thinking! I am 56 years old and a lot to live for so the operation is my second chance. I will be thinking of you!

Reply

How are you after finishing your treatment ? I know what you mean I,m also terrified of the surgery but at the same time very thankful I can have it . Sometimes I feel very positive with a lets get on with it attitude other times I feel sad and weepy . Please keep in touch and let me know how you are take care x

Reply

Treatment has been pretty good. I have been tired and nauseous from the chemo. I am in my last week of 5 weeks treatment. Monday to Friday I have radiation and on Tuesdays I have chemo. Wed, Thur, Friday are the not so good days. Saturday, Sunday and Monday are quite good. Range of emotions for sure but we just have to get on with it. I have ordered an electric bed to help post surgery as most people talk about the reflux etc however I expect everyone copes quite different. I am in Australia so the support network is not quite as broad but I have great family and friends.

Reply

It is scary but it’s been caught in time for s cure thank goodness. As far as advice goes use this forum to stop feeling isolated and as you are going to have daily radiotherapy the staff will be there to help you. How is your eating? Mine was not so good at the stage you are now but I felt well and so I made a lot of soup for the freezer and that was quite useful. But we’re all different and the last thing You need is an unwanted task!

Reply

Hi i.m eating fine at the moment sometimes I get a horrible feeling coming over me and then I feel sick and can't eat but that's emotional and when the nerves kick in so that's what i.m trying to keep on top of. Physically i.m fine plenty of energy that's why I find it hard to accept this diagnosis I don't feel like there's anything wrong with me my only symptom is certain foods ( bread meat) the first mouthful sometimes hurts when I swallow but after that i.m fine where you like that ?

1 like
Reply

Hi Molly,

you wrote:

'Physically i.m fine plenty of energy that's why I find it hard to accept this diagnosis I don't feel like there's anything wrong with me'

That was the same with me, and that's why it was so difficult to accept treatments planned. I had no difficulties swallowing whatever, it was due to throat cancer follow-up that they discovered the tumor in the oesophagus.

Nevertheless I had to accept that I had cancer. And I had to accept that it had to be treated by chemoradiation and surgery.

As for now, I'm okay, actually on holiday in Spain. Emotionally, it's hard. Will ever be, I suspect. But that's life.

You will cope with the things to come.

All the best, Monika

1 like
Reply

Thanks for your reply .how long ago did you have surgery ? Have a lovely holiday x

Reply

Hi Molly,

I had surgery mid february 2018. 17 days in hospital, no complications. It seems horrible to think you're are not allowed to drink for 6 days. In fact, it was not that horrible. I got intravenous hydration, you will adopt to these things. And forget about them afterwords.

After dismissal I spent 4 weeks in a rehab centre. It wasn't fun, but tolerable. At home I found out how best to sleep, to eat. It's not so much as it used to be before diagnosed.

Psychologically speaking, it's the most demanding for me. As for now, first day on holiday, I don't feel pain in my back ...

Keep in touch! Best wishes, Monika

1 like
Reply

HI is that the average time in hospital after the op? How do you sleep now I know others have said they can't lie flat so what do you do ? And how is eating managed sorry for all the questions I,m trying to get as much information as I can thanks for your reply x

Reply

Hi Molly,

I wrote:

'It's not so much as it used to be before diagnosed.' But I wanted to say:

'It's not so much different as it used to be before diagnosis.'

Your questions:

I don't know about the average time, it also depends on the hospital, I think. And if surgery is minimally invasive or open. My operation was in two steps, Friday abdominal surgery (minimally invasive) and Monday thoratic surgery (open). So I somehow 'lost' two days in between. (I don't know exactly why they did this procedure, but it's not usual.)

As to sleeping I tried to sleep on an inclined matress, the result was me slipping downwards. Then I tried a wedge but got back pain. Now I just use two cushions, seems to work best for me.

Eating was difficult during the first weeks, sometimes I got sort of a cramp in my throat, but that's gone by now. I can't eat as much fruit and vegetables as I used to and don't have much for dinner, but since I don't lose weight, it's obviously enough for me. Nevertheless, as far as eating is concerned, you will find many different reports. I e. g. don't separate eating and drinking (as recommended), but the amounts are not as big as before.

As said, I think one adapts to these changes, and it's easier than I imagined it to be.

I'm not an athletic person, but I do some swimming and walking.

By the way, once treatment had started I felt much more confident than before. It became sort of a 'job'. My husband drove me to the radiation treatment early in the morning (my appointments were Monday, Tuesday, Wednesday, Friday 7:30 a. m.), at around 8 a. m. I had finished, had a cup of coffee and walked home (around 15 minutes from the hospital). Had a shower and breakfast. On Thursdays it was the chemotherapy first at 9 a.m., about 2 hours, then radiation, and was home around 12 o'clock. Hospital staff was very nice and encouraging.

Best wishes, Monika

1 like
Reply

I have been following your posts, thank you for the information. Like Molly I am having my surgery soon.

Reply

Hello Janashlin, I wish you all the best for your surgery in December! Monika

1 like
Reply

You may also like...