Advice of my treatment plan

Hi JaneyM1

Welcome to the forum. Yes I had the same treatment plan in 2021 though my medical history is different. I was 53, never smoked, hardly drank, generally quite fit and otherwise healthy.

I was diagnosed with a tumour mid oesophagus that blocked the oesophagus completely so I had a stomach feeding tube fitted. T2N0M0. Squamous cell carcinoma. I was offered to go on the SCOPE2 trial which randomly picks some patients to have a higher dose of radiotherapy to see if that is more effective. I decided to go on the trial but was not chosen to have the higher dose so had standard dose 

I was very ill when I started the treatment plan, very weak as I'd lost a lot of weight so I wasn't starting from the best place. I had to syringe Fortisip, water and all medication through the feeding tube but I could only tolerate small amounts at a time so I'd get one feed finished, have to sit still for 30 mins to let it settle then start the next lot of medication through the tube. But it saved my life.

After the first cisplatin I had a scan which showed the tumour had shrunk significantly and I found I was able to nibble on cheesy biscuits which was lovely. 

Side effects - utter exhaustion, skin peeled off feet which I slathered in Udderly cream (as recommended on this forum, bought from eBay), numb and tingling fingers and feet (feet were very painful at times especially evenings), tinnitus which at times was awful, constipation (Laxido on prescription), sore mouth but I didn't actually have any ulcers. I used Simple shower gel and shampoo, sensitive toothpaste and a soft toothbrush. My hair thinned a lot but didn't fall out completely, I used a wide toothed comb. I felt nauseous a lot of the time but wasn't actually sick. I had anti sickness meds which obviously helped. Dozed a lot in the daytime. Some days after chemo could barely drag myself out of bed. 

The  cisplatin chemo takes 6 hours as you have to have a flush through the vein before and after. Radiotherapy was fine, they create a mould for you to lie in to help you keep in place and each session is quick. I didn't burn, had a slight tingling feeling of the skin front and back which I slathered in E45 after every session. As the radiotherapy sessions progress the oesophagus becomes inflamed and it is harder to swallow again but that only lasted a couple of weeks for me. 

All staff were lovely and kind even though this was during covid and they were stretched to their limits. 

Best news is that it worked. I'm 2.5 years clear, due for more tests in a few weeks time.

I hope everything goes well, let me know how you get on and any questions please ask,

Take care,

Amanda 

Thank you Amanda unlike you I am still well and eating soft foods but painful when eating  where the narrowing is into the stomach from the tumour , I  have lost nearly a stone in weight but still active  walking everyday .Thankfully, because I was still having treatment for my breast cancer it was picked up straight away and in all fairness to my team at the hospital it has been sorted cannot fault the NHS . It’s exactly a year since I started my chemotherapy treatment for my breast and that  lasted 21 weeks  and l also had a mastectomy but thankfully this is only 12 weeks should be finished in July . thanks for your help and advise it sounds like the symptoms are more or less the same as the chemotherapy for breast cancer only thing I did lose all my hair on that treatment but I was told that was going to happen so one consolation I should keep my hair this time , its growing back now but my hair is the least of my worries as long as it gets rid of the cancer I will be happy.

thank you so much for your advice this site helped me through my breast cancer you take care 

jayne xx

Hi JaneyM1. I just wanted to let you know that I read your post and to say that at the beginning of June last year I was put on the exact same medication as has been suggested to you. I was told of numerous side effects (which Crochetherapy mentioned in her reply) but I was very lucky regarding this. The only side effect I suffered from was tiredness and I would need a rest through the day. In preparation for possible dry hands and soles of the feet I used Boots Dermacare cream, but like I say, I didn’t actually need it, although my feet were lovely and soft. I also managed to keep fitness levels going and did a lot of walking. I found that towards the end of my Radiotherapy treatment and for approx 2 weeks after, eating was sore and uncomfortable, but I could still manage most normal foods, and once that had resolved itself I felt really good.

I hope this helps you and I hope that you also suffer few side effects. It sounds like you’ve been through a lot just lately and sending you a big hug. 
Best wishes, Julie

Hi Julieanne60

thanks so much for your reply , I am still well just starting to find it painfull to eat. I was fine last year going through chemotherapy and the radiotherapy for my breast cancer so l am hoping l will be fine this time 

Hi Janey M1

i have a similar history to you. I had breast cancer 15 years ago.  It never returned. I was diagnosed with oesophageal cancer  on the junction of my stomach Christmas 2021. 
I had 4 cycles of flock in preparation for my operation. Unfortunately it had spread and I’m inoperable.!

I was put on immunotherapy Nivolumab for 2 years and I’ve 2 cycles left. Every scan I have had shows I’ve had 100% response.. I am disease free.  Just had another CT on Friday and awaiting results. 
There is another treatment I can have if the disease becomes active again..

Keep the faith.

Good luck Hilary 

Hi Hilary K

thank you so much for your reply it’s nice to hear that you have been through breast cancer as well , in myself I am well and fit and to be honest I have just taken the news and thought here we go again . Last year when I had my last treatment I treated it as my new job and put it in my head I was going to work on the day of my chemotherapy  and radiotherapy but I was glad to be made redundant at the end of treatment but I didn’t think I would be in this job again (lol) but here I go again , I start my first shift of chemotherapy Friday in 12 weeks if will be over again 

take care all the best

jayne xx

Hi Jayne

I’m with you I consider my treatment as a job. I’m working 3 days a week and I’m enjoying it. I will not return to full time lol. 
I’ve added you to my prayers. 
Good luck with treatment and take it easy.

Hilary x

I’m so sorry that you’ve got a new primary cancer. My husband had 25 doses of chemo radiation over Christmas and tolerated it really well. He didn’t get any of the burns that I know people can get with breast cancer radiotherapy, he just had fatigue. I hope your treatment goes well.