Jules,

I'm so sorry to read about your Dad's experience. One of the most frustrating things about cancer is that it is so hard to predict what the outcomes will be. Almost identical patients given identical treatment can have such widely different outcomes. One of the biggest risk factors is the one you have pointed out which is of secondary infections having a massive impact due to the chemo weakening the immune system.

I was treated in 2013-14 just after the guidelines on the use of chemo were changed. Previously patients with Oesophageal cancer were apparently given a higher dose for more cycles. Research into outcomes recorded over previous years showed that survival rates were better with lower doses and fewer cycles - which showed that hitting the cancer hard over a long period of time was the wrong approach. As a patient I was very sceptical about this but I was persuaded by the oncologist that it was the best option.

My own case was very very similar to your Dad's. I was given between 2 and 6 months to live without chemo and maybe a year to 18 months with chemo. I opted for the chemo and I was lucky enough to respond well to it. That was just over three years ago. I still have Stage 4 Oesophageal Cancer - it is inoperable and incurable. My quality of life is good and I am convinced that without chemo I would have been dead before Christmas 2013.

The whole process feels like a game of Russian Roulette - no wonder many of us patients and our families get depressed, angry and frustrated. None of it seems fair.

Best wishes

Dave

Hi Bill,

None of us feel very brave when dealing with this stuff, we just have to get on with it partly due to peer pressure not wanting to let others down and partly through stubbornness.

How many cycles of chemo are planned for you and which chemo are you on? I was on a three week cycle of EOX (Oxalyplatin and Epirubicine infusions plus daily Capecitabine) for nine weeks. 

The first cycle wasn't too bad, but I found I was having to sleep almost around the clock immediately after the second and third infusions. It was like having the worst hangover ever combined with the effort of running a marathon without training. I was as grumpy as **** , felt cold all the time (my extremities felt frozen and physically hurt if they touched anything cold) and had no appetite. I survived on homemade power shakes, homemade soup, chocolate and cake. 

Hang in there, avoid anyone with the slightest hint of a cold or other infectious disease even if that means banning visitors. Try to get as much exercise as you can - I used to dress like an Inuit and take my dog for walks in the second two weeks of each cycle just to get out of the house and to ease the muscle aches caused by the chemo.

The good news is that almost all the side effects will disappear within a few weeks of ending chemo. My appetite and sense of taste and smell returned slowly after a fortnight. 

Good luck

Dave

Hi Dave. This is really good info. I too had 6 cycles of the ECX chemo, 3 pre-op and 3 post-op. I found the tablets taken every day for the 3 week period were the worst bit especially post op. It is strong stuff and I am now on Paclitaxel and monthly Herceptin which is so much better to cope with. My Oesophageal Cancer has been removed but spread to my Liver and as mentioned at the moment inoperable and Terminal. However,....you never know, and I like you if I can get over 3 plus years from prognosis that would be great!! Cheers Simon.

Hi Davek

   I'm on EOX for 6 sessions , Friday is the start of session 2 . The first week and half after session 1 i could not eat just liquid meals [ ensure ] , it will be worth it if i get a similar result as you .

    Thanks for your positive reply .

 bill

Hi Bill

I've just been to my Mum's house and she showed me where my Dad's chemo actually went wrong which might be useful for you to know - there is a recird book that the nurse administering the chemo has to fill in at the start of each cycle, on the first cycle he started with 9.9 for his white  blood cell level which is a nice normal level which of course gets knocked right down with the chemo but should come back up again before the next lot, on the entry for the second round of chemo the nurse wrote down that his white blood cell level was ony 4.4! half what it should have been yet they went ahead and gave him the next dose of chemo! At least this is something for you to look out for now and ensure they don't do it to you.

Thank you for your kind words, he's sadly missed and we felt a bit cheated as he had just turned 69 but then again it was 68 good years and he suffered very, very little from the cancer which is a blessing in itself x

Hi Simon. I had herceptin as part of my breast cancer treatment. I feel very confident of its impact. I met lots of people whose secondary cancer was contained with no further spread. So great news for you and hopefully you will respond just as much. Take care. A

Hi Dave and thank you for your kind words - I have  now seen where my Dad's chemo went wrong, my Mum has shown me his record book where the nurse records his white blood cell levels before each dose - his white blood cell level was half what it should have been when they gave him the second dose. A silly and tragic mistake but at the same time who knows what it may have saved him going through in the long run - he had a quick and peaceful end and with very little suffering which is blessing in itself for someone with terminal cancer.

The good thing is that trials are going on every day that will hopefully benefit us all before too long and the NHS are now aware that chemo is quite dangerous in itself and 19 hospital trusts are reviewing the procedures for giving chemo. 

Good luck to all of you on here for the future x

Hi Bill,

my my husband was diagnosed with t4 oesphageal cancer that had spread to his liver and lymph nodes in August 2014. He started chemo in September, he managed it well, no sickness or hair loss but had blood clots.

i don't know how but he went to work, he played golf, darts and pool. He went out to watch greyhound and horse racing. He flew to Spain several times, and we went on a once in a lifetime holiday to the Caribbean 10 months after diagnosed with all his medication. 12 months later he was still doing well despite Tumor growth during the break in chemo. He lived life to the full and enjoyed every minutes. He did everything he wanted to do, but still kept things normal. 

We made it through a 2nd Christmas and New Year, but we lost him on 6th January this year. He was 150 miles from where we live in a caravan by the sea in the village where he grew up.

i miss him terribly, but he taught me to never stop doing what you want, and if illness means you can't do it the way you want, find another way. Laugh, cry, love , believe and most of all have hope. 1% is still better than nothing. Eat all the non healthy foods you want, live off jelly and ice cream if you want, and most of all don't give up until you want to.

everything I want to wish you sounds wrong, but I wish them anyway.

lou

Lou,

Thanks for sharing your story, reading it was very moving.

Best wishes

Dave