Loving the teacher rant! My poor kids are definitely neglected on the school front right now.

I did try the squamous search and not many at all.

That is amazing news on the disease free status!! Must be such a relief but can imagine just how surreal that would be. Good that they are airing on the side of caution and doing four more rounds! 
 

Take care Xx

Hi Ward 

Very rare. Hope you don't mind me asking-is your dad recieving chemo for the squamous? And if so which one? 

Not much information out there at all to say which combo of chemo is used most often. 

Thanks 

R

 

Also feeling very worried that my Dad's tumour is beginning to invade his heart and diaphragm, he has hiccups when eating in these past two days and feels pain in his back. Will speak to his team tomorrow. 

Hi,

Sorry to read about your Dad’s diagnosis. What a lot of responses you have had in just a week.

As someone said, there seem to have been a lot of new members with queries about Oesophageal Cancer recently.

One of the few things I can add is that with a late diagnosis it is almost impossible to know the rate at which the cancer is growing and spreading as treatment usually starts almost immediately. Whilst frustrating, I found this hopeful as I could have been unknowingly living for years with it rather than it growing at a terrifying rate in just a few weeks as I had feared. 

I was misdiagnosed with a peptic ulcer by my GP (and her colleague) and had been treated unsuccessfully for that for 2 or 3 years. The symptoms are similar and at 55 was considered low risk for OC (the NICE guidelines for GPs  were changed the following year). 

FLOT and EOX are combinations of chemo drugs - Oxaliplatin is common to both regimes - if you search this website the acronym is broken down and a scary list of side effects is listed for both. 

Second opinions are rarely offered these days because since the adoption of multi disciplinary teams a diagnosis is now a consensus of several doctors led by a consultant. The only way to get a true second opinion would be to go to a different team at a different hospital. This is different to the way GPs work, which is why getting a second opinion from a GP is easier to arrange.

I hope this helps answer some of your questions.

Best wishes and good luck!

Dave

Hi Dave 

Thank you so much for responding to my post. When given a prognosis like my Dad has-a very similar one to yours-it is really hard at first to feel anything but devastated until we read stories like yours of hope. I've actually told my Dad about you a few times now. 
You are very thoughtful and generous soul to continue to give advice, share your experience and offer words of support over such a long time.

Unfortunately it feels as though my Dad's cancer is growing and spreading fast. He first noticed something wasn't right in the middle of Nov. He was prescribed something by the GP to control acid reflux and then made a couple of trips to A&E. On Christmas Day he was wasn't able to eat much. He then also noticed at the beginning of Jan a lump the grew at speed at the base of his neck. After pushing for an endoscopy to be brought forward he was told there was an 8cn tumour in the oesophagus. Since then my Dads condition has worsened from soft foods to liquids which is giving us many sleepless nights. Especially when chemo is still more than a week away. 

We have been told OX (oxaliplatin and capecitabine) will be the treatment and told it is as effective without the Epirubicin, but I have my concerns about this as I haven't come across OX on its own on this forum and from anecdotes people have faired well with EOX albeit in regards to the adeno type and not squamous cell carcinoma. 
 

Thanks once again for all the information you provide, it is greatly appreciated! 

Hi Claire 

How are you? Hope you and Stu are doing well.

My Dad has gone from soft foods two weeks ago to just liquids now and even they are very slow to go down. It is shocking how fast this progresses. His cancer is graded as 2/3. He is now booked in to have a stent. 
 

I was thinking of you as I remembered your results are on Monday. I truly hope they are the results you hope for .

I think you mentioned Stu was on the CX regime-cisplatin and capecitabine? How have the side effects been were these manageable/tolerable? 

My Dad is being out on the gentler regime of OX but worried this will have little effect on the tumours 

xx

Hi sorry to hear about your dad not being able to eat, it really is rubbish, please take some comfort in knowing that Stu can now eat solid food since his second Stent was fitted as his first one moved so he was in pain and was still not able to eat anything, they done an X-ray and noticed the first one had slipped and was lying horizontally across the top of his stomach so in effect causing a blockage, they fitted another one in November and thankfully he can now eat normally although does still get slight pain for about 2-3 seconds when he eats the first couple of mouthfuls, he often forgets he has a stent and eats to big pieces like he used to before all this, so the key is remembering to eat small bits of food and chew it well. If it's possibly ask the oncologist to prescribe for your dad dexamethasone steroids 4mg when he's first had it done as this will help to increase his appetite and it also acts as ant inflammatory which is good, so doctors will say that you can't stay on steroids for a long time but at the end of the day it's about quality of life for your dad and Stu, Stu is still on the steroids now and it's really helped him no end, he's had slight swollen ankles from taking it but takes a diuretic which has solved that. 
stu did tolerate his chemotherapy rather well, he only started to get side effects on his 6th last cycle which was a few mouth ulcers and dry cracked skin, he was fatigued about a week or so after his IV cycle so would sleep about 20 mins a time throughout the day, I'm finding that he's more tired since finishing the treatment but this can happen after chemo and they call it cancer fatigue, 

thank you for remembering we get his CT scan results on the 8th (Monday) I'm dreading it if I'm honest but we can't change things and can only plan and move and deal with it once we know the results on Monday, I'm just keeping everything crossed and trying to remain positive. 
let me know how your dad gets on and please keep in touch. lots of love

claire 

The first stent slipping must have been so distressing Claire. Good to hear that Stu was able to eat solid foods after the second stent. Thanks for the advice about Dexamethasone, for now they have given it as part of the treatment for three consecutive days after treatment. 

I can only imagine how intense the anxiety is leading up to the scan. I reallly hope the results are what you hoped for 

We have had a really tough week this week. Dad had his stent fitted in last Friday. That caused caused a lot of pain, discomfort and worry over the weekend but then thankfully he was able to start his chemotherapy on Monday. Unfortunately by Monday evening he was almost passing out so was admitted into hospital for two nights. They found he was hyperglycaemic, severely dehydrated with a slightly high lactate level, all type 2 diabetes related which has been thrown out. He is now under the diabetic specialist team care but they are not easy to get hold of. I left a message on their answering phone to which they say they will get back to you within seven days. 

My Dads appetite has completely gone-we had bought ensure plus and nourish drinks when he went to the liquid diet before the stent went in. Now my seems to have gone off them completely. He lost about 8kg over Dec/jan and another 2-3kg  in these last two weeks. I’m keen to build his calories back up now but he suffered from three loose stools today. He has now had some medication for this around 8pm which I hope has put a stop to that. But building calories up feels like a mountain to climb so really appreciate the advice on the food-really think there is not enough advice on this from his oncology team. The dietician has confirmed their first telephone appointment with us for the 19th Feb, but we clearly needed the help starting three weeks ago.

Thanks for all your invaluable advice Claire, lots of love

R xx

Hi Claire,
 

How are you and Stu doing?
My Dad is on his second chemotherapy cycle now. Stent is still continues to cause pain and discomfort so he continues to have co-codamol-we have been told some people continue to experience prolonged pain. But will this continue indefinitely I don't know. It is a fairly long stent at 15cm. 
My Dad is unfortunately also already experiencing more side effects after second cycle. During the first three days after chemo where he takes steroids he is soem what wires and unable to sleep. This lead him to not switch off one night and have what I think was a panicky attack. Once off the steroids he was very fatigued and also nauseous. Really hoping his energy and spirits will be up soon Xx