My husband was diagnosed with oesophageal cancer at the end of June. Subsequent CT showed lymph node involvement and metastasis in the liver, so no surgery. He is just finishing his 6th cycle of ECX regime having had his last infusion of Cisplatin and Epirubicin 10 days ago, so just 11 days' worth of Capecitabine to finish.
We're doing everything we can to try and help things along so he's having 1lb strawberries in a smoothie, juiced greens (sweetened with melon otherwise it really does taste gross!) and Dr Budwig's flaxseed oil, quark and flaxseeds mixture every day. Other than that good food and a bit of exercise when his feet aren't too painful from the effects of the Capecitabine. And he meditates every day. He has no real swallowing symptoms so is lucky that way and is described as very 'robust'.
We are now awaiting another scan and the results on 18th December. In spite of the awful shock this initially gave us when we learned of the diagnosis we have remained very positive and he is determined to beat this even though we have been told it is not curable. We are obviously hoping for a good result from the scan and a good prognosis. I was just wondering if there was anybody out there with positive news of what happens after chemo? It seems like there is very little else on offer now and whilst it will be fantastic to get rid of the chemo toxicity we are once again stepping into uncharted (for us) territory. The possibility of clinical trials was mentioned but I'm not sure how far down the line that would be. But a little bit of 'normal' living wouldn't go amiss. My husband has been absolutely fantastic throughout all this and he really deserves a holiday in the sun!
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hilbean
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I think that people vary in relation to how effective the chemotherapy is in reducing the cancerous cells. It is a great shock, as you say, and something that quite a lot of people would take time to come to terms with.
Generally speaking, patients in the UK are not offered opportunities for trials as much as some other countries, and sometimes that seems like patients might be missing out. But if you are offered the opportunity, you would need to think carefully about it and to be realistic about the outcomes. If it helps people in the future, that would be a good thing; and if it gives some extra weeks or months of life that would also be good. But supposing that the extra medication makes your husband feel absolutely awful?
In some ways you might both want to make sure that you take every opportunity to enjoy what quality time you can manage together - if one gets three months extra of life but they are all days when he feels terrible, and you both feel that each other is being put through an awful situation, I can understand people opting for more short term distress-free days even if it does mean a shorter life overall.
The issue of swallowing can be relevant. As the tumour grows larger it can block the passageway through to the stomach, and patients often have a stent put in to keep the oesophagus from closing. It helps to maintain the option of taking food through the mouth for longer, and this can help with quality of life.
Looking ahead, managing any pain can be very important. There should be no reason for pain not to be managed properly these days. Hospices are usually the best at doing this, but cancer units should also be very good.
Experimenting with food to make it palatable will be an ongoing challenge. But taking what enjoyment there may be from food is probably more important than anything else like nutritional value if it has to come to a choice. There are all sorts of things you can mix with ice cream and so on. And quite a lot of different nutrition drinks around in addition to those immediately offered on the NHS.
You won't know in advance how your husband will feel, but take the opportunity for holidays whilst you can, rather than delay things. I have a friend who has just gone to Berlin in between chemo sessions as it is somewhere he always wanted to visit, and it was a good break.
Feeling progressively more tired, and sleeping more and more can be a feature of life ahead, so if he has the energy to do things it is a time for being impulsive and doing things together whilst you can.
All of that is probably quite a bit ahead, and enjoying the time when the chemo medication has drained out of the body is definitely worthwhile!
Thanks for asking. I will give you the bare bones of what happened.
My husband had the scan before Christmas and we decided to wait for the results until after Christmas just in case there was bad news that we didn't want to tell the family. Scan results in January looked good in that things didn't really seem to be worse but we were warned that once chemo has finished the cancer, for some, is no longer held in check and can worsen. Indeed that is exactly what happened for my husband. He wasn't too bad for the first month but his appetite worsened and he was mainly on supplemental dietary foodstuffs prescribed by his doctor. He didn't have too much problem with swallowing but he started to regurgitate his food much more so we suspected the tumour was growing bigger and the consultant booked him in for another scan. In the meantime he was offered an appointment regarding clinical trials which we accepted.
A week before the appointment my husband had a lacunar infarct (mild stroke) with very mild symptoms and recovered very quickly and was discharged the same day. However, as he was already in hospital and was having a brain scan they also did the scan for the cancer at the same time (although we did not get those results on the day). The morning of the appointment for the clinical trial we were up early and getting ready to go when he suffered a major stroke which left him unable to move or talk and he was rushed into hospital. We got all the results that day. He had a major bleed in his brain which in itself was bad enough but the tumour in his oesophagus had grown (as we'd suspected) but the spread of the cancer was such that it almost filled his liver (in spite of the fact that he had little in the way of jaundice) and it was also in his spleen. In essence there was no coming back from this and he died two days later on 13th March.
In spite of all of this he remained positive and calm. Yes, there were times when we were both scared but I think the most important thing for us was keeping the love and the hope that maybe things would get better even though we knew in our heart of hearts that it was very unlikely to be that way. And although surgery has been a good option for many we were very glad that he didn't go through that as well.
My hope is that we find a solution for finding this dreadful disease sooner and for hope and strength and love for fellow sufferers.
I am so sorry. It was very brave of you to answer me. Sorry if I caused you more grief.
I suppose I was hoping you had found a miracle cure. My husband had chemo Cisplatin & 5FU to reduce tumour before surgery, however cancer had spread to liver by time he got CT scan so no operation. He had to fight to get more chemo - Docetaxel. Didn't work and they wanted to give up on him but he asked for more and was eventually given FOLFIRINOX. He has now finished 12 rounds of that, it did work to reduce liver mets and tumour in oesophagus reduced slightly then stayed stable. He then asked for SIRT treatment, at first he was denied it in Scotland but after a fight they said he could go to Christie's for treatment. Unfortunately when he got PET scan it showed up something suspicious on his spine and mouth. They now say he can't get SIRT treatment and his only hope is Clinical Trials which his oncologist is trying to find for him. He is only 50 years old.
He has recovered from the chemo and is enjoying life at the moment, just been on a Mediterranean cruise and we are going to Amsterdam this weekend.
Your story just serves as a reminder to us to enjoy the time we have left together.
Hope you are staying strong and managing to cope - my thoughts and prays are with you. xx
Sending love and hugs to both of you. I hope you get something positive from the Clinical Trials. Glad to hear he's recovered from the chemo and that you're out there enjoying life.
I know we were always told right from the beginning that there was no cure and we accepted that on one level but on another level we chose to believe that somewhere out there someone will be that miracle that defies it all and we hoped it would be him. Once you have one more miracles will surely happen... You never know eh! Maybe you guys will be that miracle.
Keep enjoying life, never give up and most of all enjoy your love and life. xx
My husband died in 19th September, he had one session of a trial drug but it was obviously too late, he started experiencing terrible pains on the Wednesday night, they got it controlled on Thursday morning, he was so doped up by Thursday night that he never opened his eyes again and died on the Saturday morning. We were so unprepared, it just happened so quickly, we had expected him to start deteriorating and perhaps need nursing but no one night we were in a casino 4 days later he was dead. I know he wouldn't want to lie for weeks in hospital but...
How are you coping? I thought I was doing ok but it seems to be getting worse with every passing day x
I'm so sorry to hear that. Like you say, you didn't really expect him to go so quickly. I think it takes quite some time to come to terms with it all and it's still very early days for you. I'm almost 8 months down the line now and in some ways it's easier but in some ways it's not. Very hard to describe those feelings isn't it. I keep being told that I'm 'doing very well' and maybe to the outside world I am but I don't always feel that way inside and on the darkest of days I generally try and stick to my own company but that's just the way I cope with things. I think the only thing that keeps me relatively sane is running. I started running when my husband was ill so I could do the Race for Life for him but I haven't stopped since. Although I spent about 3 months off and on as I got very run down and seemed to get every bug under the sun. That was hard as I quickly discovered that I was using running as my release and when I was on my own down those country lanes the only things that could hear me crying my eyes out were the sheep! Must have looked a pretty sight!
Big hugs and stay in touch if you need. I hope you have friends and family around you x
Oh Laura I'm so sorry to hear that. It's still very early days for you and the pain must seem unbearable. Run, scream, shout, cry if you can. Look for the beauty in your surroundings as you go. I remember those oh so surreal days of pain and odd clarity of certain things around as if focusing 'out there' into nature was the only way to stay afloat. It is now almost 3 years since my husband died and I'm not sure that you ever really stop grieving/missing them though it changes with the passage of time. Yes, I am in a better place thank you and like your husband, mine was a happy, kind soul too and what lovely memories that gives you. Hang on in there and keep running. It really does help. xx
I have just read your words and the other ladies words and I want to say hope, positive vibes, Love and strength. Especially when I see you reply back to these heart broken loved ones. I not expecting you to be here or maybe you are. My beautiful parents have also been on this journey and fighting winning to. That was until 2 Thursdays ago the evening of the 28th. We lost my dad. He had us with him mum, myself,my partner, my kids and their girlfriends. Such a sad and hurtful cruel loss is how I feel right now. I have to do this strong and keep sane and focused for my mum. And for my dad. He was doing very good week before. Even his oncologist was in shock when she came to speak with him.
She only seen him 2weeks before at his a appointment discuss new treatment!
The fact he was admitted to a local nearest a+e. After called triage at his cancer clinic, after he thought he' had pinkish pee' ( Blood ) something Disturbed me about this. so upon his discharge from that hospital he was prescribed Omeprazole from this hospital? I didn't understand that? Surely they (junior doctors and Attending Dr. &ward nurse) should have contacted his oncologist? Before dishing out new meds for a patient who is in care a MD of cancer.
I know what he passed away from, I'm not in no denial of his serious non curable disease. But I was and will question during that week. Expressed my concerns with PALS and expressed my feelings for me to follow up my concerns with appropriate parties.
Leave you all with a little humor... Basically told them
I'll be Back.
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