Anyone who's had Chemo & Radio combined

bumping this post back up myself so I can get some help

Hi Chris

So sorry you have not had any responses to this as yet, have you considered asked a nurse? I know they may take a few days to answer but they may at least be able to provide you with the help you seek.

How is Mum at the moment?

Lowe'

Hi Lowe,

Thank you for the reply. I've never used the ask the nurse, but I will right now. Thank you.

She's not so good, it was so weird, as soon as she left her last radio session she went really dizzy and sick and hasn't seem to recover since.

What im really worried about is every time she eats she is sick so she not getting any nutrition in her. It seems that she can get the food down ok but the problem is with feeling sick and being sick after its gone down.

Her GP has prescribed her some nutrition drinks but im sure she needs more, she losing weight, not eating and feeling extremely weak. Its 5 days since her last radio / when they took the last chemo off so I was hoping we might be turning the corner a little by now.

I'll be honest, im extremely worried.

Hope you and you husband are well and the rest of your family too, you've had such a rough ride and I wish you all the best.

Chris 

xxx

Hi Chris, it's Graeme.

My dad had exactly what your mother was given, 5FU & Cisplatin along with a corresponding 4 weeks worth of chemo. He didn't have radiotherapy. He also had to stay in hospital for each week. He had a stage 3 carcinoma of Oesophagul cancer. He had the horrendous 9 hour operation to chop out the tumour & have the stomach pulled up to reattach to the Oesophagus.

What I can tell you with regards to the 2 medications that dad had & your mother has received is his quote. "The chemotherapy was actually worse than the operation, I just want to sleep, I don't have any appetite, my favourite part of the day is bed time." He lost 3 stone very quickly. Then when his appetite came back, he wasn't as tired, he put weight back on, he felt better. But to sustain his weight, he was given bottles of very palatable liquid foods. These gave him the kick start to begin eating properly again.

I really would contact your hospital & speak to a dietician. They have a variety of options, the type my mother is having now is called Ensure, a 200ml bottle of every mineral , vitamin & weight gain ingredients. You can have savoury or sweet drinks, they are entirely smooth & just 4 bottles will sustain  or even increase weight. They come in trays of 30 bottles

& you get 3 trays. You can ask for any flavours you wish.

With regards to sickness & just pure fatigue, my dad also had this a week after the treatment ended. I can only tell you that it lasted about 3 months, & the sickness aspect stopped in approximately 2 months. But he slept virtually all day & night. So what I would do is get on to the hospital or you can try The Abbot Nurses who supply this to the hospital or to your home via courier.

This fatigue will go, but it takes time, as will the sickness. And there is weight sustaining food freely available. I think I'd try The Abbot Nurses first.

I hope this helps, it's mix of my parents remedies & lengths of illness.

Just one thing to tell you, dad was gardening after 3 months. The food made this possible.

Best wishes Chris,

Graeme.

Thank you Chris,

I wish you all the best also, and the great response from gray also may give you further encouragement that things will get better....I certainly hope they do x

Lowe'

Hi Chris,

I have also had the same chemoradiotherapy as your mum. Just to give you some background, I am a 65 year old woman who was diagnosed as having lung cancer in January 2020, after a lump showed up on X ray, then CT scan, then PET scan along with a lymph node that lit up. A biopsy was done on the lymph node and I was told I had squamous lung cancer. In March 2020 I had an upper right lobectomy which included removing the lymph node. Six weeks later I was telephoned and told that my lung cancer (which was successfully removed) turned out to be adenocarcinoma not squamous. That meant that the lymph node meant I had another different primary cancer somewhere in my body which was classed as occult - meaning they did not know where. An endoscopy showed it to be oesophageal.

My oesophageal cancer was 28-30cm and classed as T3 N1 M0 and inoperable. On 22nd May I started my first of 3 cycles of chemotherapy - Cisplatin and Capecetabine. I then started the combined chemo and radiotherapy on 24th August which was 28 sessions of radiotherapy and the chemo was paclitaxel and carboplatin. Throughout most of my treatment I managed much better than expected - yes I did lose weight, I had no appetite, difficulty swallowing, lots of burping and hiccups, mouth full of ulcers, tired and weak but I still fared better than I had expected. I was looking forward to the end of treatment and had finished the chemo with just 3 final radiotherapy sessions to get through. The weekend before my last 3 radiotherapy sessions I went downhill fast. I was so weak I could barely walk and I was constantly being sick so that I was unable to keep any medication down or even water. When I arrived at the hospital for my 26th radiotherapy session they took one look at me and decided to keep me in. I was in hospital for a week (but did manage to have my final 3 radiotherapy sessions).I had hypokalemia,tachycardia, oesophagitis,dysphagia, oral fungal infection, ulcers, nausea - the list goes on. I was on all sorts of drips and 2 hourly obs, but being admitted was definitely the best thing for me.

When I was discharged from hospital I felt very ill and low for the following 6 weeks, and it was the hardest to deal with from the time I first knew I had cancer and I think that is where your mum is at now. We know the treatment affects everyone differently however I personally found the end of treatment the worse because of the accumulations of poison/toxins in your body . My final treatment was at the end of September and I was well into November before I started to feel as though there was any improvement, or even start to eat properly.I had a scan at the end of January (they have to wait 3 months because of scar tissue) and there was no sign of cancer that they could see.  I still get extremely breathless (but I have had part of my lung removed) and I get exhausted more easily however I have no problems eating or drinking and in many respects I feel like my old self. My appetite is very healthy and I now weigh more than I did prior to being diagnosed with cancer. 

I honestly believe that what your mum is experiencing is normal, but I would urge you to contact the hospital  to discuss as she may need to be admitted to hospital for a few days and put on drips to help her through , especially with the sickness. Remember that the worse is behind you both now.  The treatment is brutal and I don't think patients are warned sufficiently just how hard it gets at the end. Mentally and emotionally I am still unnerved at every scan, blood test etc but regularly pat myself on the back for getting this far - which is something I couldn't imagine a year ago.

I wish you both all the very best, tell your mum yo hang on in there, as she's already done ' the hard bit'.  These days I spend my time getting quotes on travel insurance for cancer survivors and looking at Caribbean hotels for the holiday if a lifetime I am waiting to book as soon as Boris let's us fly !

Thank you to you all for taking the time to respond with such in depth and concise responses. 

I know we were warned about this but it was really shocking how quickly it hit her. The GP has prescribed some Ensure drinks to get energy and nutrients back up.

The oncologist is going to phone tomorrow and discuss things with Mum. We noticed that she really perked up when she was on the steroid tablets, but I think they only give you a few days worth because they are quite potent. We are going to ask if we can have some more which may also help her get through this period.

Im really hoping she starts feeling better soon as im not sure she could handle 2 months of this.

Thank you all, and all the very best to you.

Chris

Hi Chris,

Just in case no one has mentioned it, your local hospice is almost certainly the best support. They can admit you into a private room, they visit 24 hours a day, they can supply mental & physical help. The have med's that can help. And above all, they don't push you, it's your choice. You'd get a nurse sent to your home to talk about what's best for both of you, & they make things happen quickly. You get personalised care, & they are so friendly. You can literally get a hospice bed when & if mum has a rough few days. It's not just available for the last days. And the best part is that you can visit at any time, even stay as long as you want. All you have to do is get your GP or your oncologist to get a referral. GP's are quicker.

One thing to note is the type of steroid your mum had. If it's Prednisone, you can take it long term, but the one drawback is it does atrophy the muscles hence making you weaker. It may be another type though, so I base my experience purely on Prednisolone.

Best wishes,

Graeme.

Hi Graeme,

sorry I should have mentioned, my mums treatment is curative not palliative. She’s having radical chemoradiotherapy for stage 2 and they are very happy with the response so far. Don’t worry suggesting that, I should have made it clearer.

She’s actually perking up a bit with the “ensure” drinks and eating more slowly now. 

the oncologist refused to give my mum anymore steroids. I imagine because of the long term effects and body dependency. 

Chris, that's the nicest thing I have heard for a long time. I am so happy for you. Those Ensure drinks are a godsend. I'm also glad no more steroids will be given. I've seen the long term effects & they aren't nice.

Your mum is going to beat this, brilliant news for both of you.

Thank you for brightening my day & give my best to your mother.

Graeme.