How does it feel to have primary chemoradiation

Hello

I am currently in week 3 of chemoradiotherapy on a tumour in a similar place to your wife’s.

Of course I do not know your wife’s chemo regimen but thus far, I have tolerated the treatment well. It is carboxyplatin and pacitaxol once a week and radiotherapy over 5 weeks.

My treatment is not neoadjuvent as the option of surgery is not available for me due to underlying health issues.

As I am a couple of weeks in front of your wife I can continue to let you know how the treatment feels. BUT everyone tolerates the regimen differently I am told.

thanks for sharing rosiee, glad you are finally on the treatment journey, have my ct/pre radiotherapy assessment thursday this week, think i will have more of those little black dots to line me up with, Mutti has very kindly given me some idea of time scales which makes the upcoming weeks a bit clearer with timescales, same course of chemo/radiotherapy for 5 weeks, then depending on results 5/6 weeks recovery, then op if still viable, nice crimbo present. glad you are tolerating this type of treatment, keep posting really helps, sending hugs and graham53 you are definately in the right place, no question is too silly, or irrelevant,  lots of honest, helpful advice on here, which help clears a lot of the fog whilst we are in the waiting limbo. 

jules

Hello

I had radical chemoradiation, no operation. 

In 2021 I was diagnosed T2N0M0, 6cm tumour, squamous cell carcinoma, completely blocking the mid oesophagus. I ended up in hospital unable to swallow even water so was put on a drip and eventually had a RIG feeding tube put into my stomach, then had to syringe 6 Fortisips into the tube every day, plus all medication had to go through the tube. I lost weight and was weak before I even started my chemoradiation. I was 53 years old. 

My treatment was 4 cycles of cisplatin chemo by IV (this took 6 hours), plus capecitabine chemo tablets (2, twice a day for 12 weeks, I had to dissolve them and syringe them through the feeding tube) and 25 radiotherapy sessions which started on the same day as the 3rd cisplatin cycle.

I felt exhausted, nauseous, my hair thinned, my feet hurt especially in the evenings, I had tinnitus, numbness in my finger tips. I'll be honest, it was a very difficult time but I started from a bad place as I was weak and struggled with the Fortisip drinks initially as they gave me chronic diarrhoea. My nutritionist and Macmillan nurse were great and suggested 'neutral' flavour Fortisip which I was able to tolerate. 

After my first cisplatin chemo the tumour started shrinking a bit and I was able to sip water but still needed the feeding tube. They warned me that the radiotherapy would cause inflammation in my oesophagus and makes it harder to swallow again, and it did, but it only lasted a couple of weeks. 

I am 3 years clear. 

There are other people on here who had the same treatment but coped much better. I was generally very fit before I went into hospital, it was the problems with not being able to swallow anything, rapid weight loss and getting the feeding tube right that made me weak. 

Please ask if you have any questions. 

Amanda 

Hi Graham 53. Sorry to hear about your wife’s diagnosis. I completely understand her need to hear from real people about real stories, and even better if they’re recent. My treatment was exactly the same as Amanda’s treatment (Crochetherapy) and commenced early June 2023. I was lucky in that I tolerated the Chemotherapy and the Radiotherapy well. I really didn’t have any symptoms other than feeling tired and needing a snooze through the day. As I could still eat normal foods I also ate high calorie foods to try and gain weight, as I knew I’d be likely to lose weight after the operation (which I had 10 weeks after the Chemoradiotherapy had finished). I was also able to keep active and walked a lot during this time. As you can see we all vary in our treatment plans and our response to treatment, and I hope that your wife finds our stories beneficial and supportive. 
Please keep posting because there will always be someone to try and help.

Best wishes,

Julie

Hello Rosiee, thanks for replying and glad you are not finding it too bad at the moment. Good luck Jules - you are a touch ahead of my wife, and I wish you well for the chemoradio and then the surgery of course. 

Amanda, you obviously had a tough time but it is helpful to hear about your troubles, and really glad you came through. To hear that you are 3 years and clear is fantastic. Julie - thank you too for your response which gives hope that the treatment may not be as 'brutal' as many people have told us. 

As you say, we are all different and respond differently, so we'll have to see how Georgina fares. Thank you so much all of you for responding so quickly, it has been really useful.

Graham 

just keep us posted all, we are praying we can do the first option given the definative chemo with no op, with all of the replies and experiences sure us lot could put together a "what if - what to do" manual, but this forum is the next best thing, sending hugs to you all and dont forget if your are not happy with something kick back.

sadly my friends husband, who is quite laid back, 65 yrs old, had a lump on his neck, changing shape, but  no other symptons, but has history of skin cancer, finally got to see some one, then biopsies, thought no news is good news, luckily his wife jumped on it, turns out he was left in the system as surgeon off long term sick, this started may, they finally after going to pals last week, had a meeting yesterday, saw the world and their wife at oxford yesterday, he has lymph node cancer, tongue cancer, so a tough 3-4 months ahead, radiotherapy mask etc, thank god she chased, as there is a positive outlook after the treatment regime. 

even with this being our 2nd dance with this little dangerous so and so, we still have things we have got wrong, every day is a different day, we have decided to have a cancer free weekend, (hopefully, so no woe is me, etc etc) and a to do list for when all of this pants show is over, told hubby what i will save in hair care and weekly shopping will be made up for when i can start eating - one goal is for me to be able to complain my clothes are too tight, and not pull random moonies when clothing malfunctions, luckily only around the house i hasten to add. 

just a random one, any one want to add to things people say when they dont understand or know what to say,

my classic one from husbands friend "cor jules i wish i had cancer, i could do with losing a couple of stone" queue husband grabbing my hand, making julie leave the building, and saying, something similar to "oh is that the time", can sort of laugh about it now, didnt get chance to say "be careful what you wish for!!

weekend wishes to you all x  jules

After much deliberation and soul searching, and a significant anxiety crisis (because there is no 'right' answer), Georgina has elected to go for definitive chemoradiotherapy and not risk the major trauma of this operation at her age. She is now much calmer, and she starts radiotherapy next Monday. A big thank you to all who took the time to reply to my post, your writings have been a big help. Good luck to you all

Graham

Dear Graham

I am sending my best wishes. I am now in week 4 of definitive chemoradiotherapy. I am still tolerating the regimen very well. I hope you wife has the same experience as I am having.

kindest regards 

thanks for the update rosiee, i had my heart set on this line of treatment, due to what the surgeon said, but at the meeting wednesday with the oncologist again, to walk in and to be asked how can i help, when they called the meeting, put me on my backside again, felt like i was bombarded with stats, percentages, so just gave in to try big op with the option after the chemo/radiotherapy and scans if its gone can still bin off the op, so why couldnt i do that initially?  and 5 people in the room who i only knew who 2 were, overwhelming to say the least, glad you are getting on with the treatment and have a good weekend x

jules

Dear Jules

When my options were being explained to me there were about that many in the room plus my son and daughter in law. It was very off-putting that someone was sat directly behind the surgeon nodding her head at everything he said, she had not been introduced and was wearing a mask. I asked her to leave the room. The Surgeon apologised for not introducing her.

But it is a lot of information to take in. And not pleasant choices so I know how you feel. 

Might seem a rollercoaster now however it seems your team are giving you a thorough review to find what is best for you. And as you say, you have still options ahead of you.