Oesophageal Cancer

Hello there

My husband was diagnosed on 2 October with a tumour just above the stomach. He was 72, very fit and has never smoked or had acid reflux. He hardly drinks alcohol. At first the doctor mentioned an operation but subsequent tests showed the cancer is in the lymph nodes so he was offered chemotherapy.

He had oxaliplatin by infusion and capecitabine tablets but could not tolerate the nausea. He couldn't eat or keep water down and spent five days in hospital. The second chemo was Folfox and is intended to be six cycles of two weeks. Oxaliplatin by infusion and a pump for 46 hours. He has a PICC line in his arm. This second cycle caused ulcerated mouth and thrush and again he couldn't eat and spent five days in hospital. The next chemo was delayed for two weeks as he had zero white cell count. On Friday he had another infusion and pump and so far is fine. They reduced the chemo to 80% and we are hoping this will mean the side effects are easier but we also have lots of mouth medicine if the ulcers start again. Fingers crossed.

 

My husband has lost his hair and it surprised my how aging that was. He wears a bandana in the house and a beanie when we go out. That means he looks like himself but thinner as he has lost weight. The chemo must have shrunk the tumour as he is able to eat almost normally at present.

 

I am wondering if there are people going through the same experience or have been recently. What can we expect was the chemo goes on? Does it get easier?

 

 

  • Hello Daisy-May

    Sorry to hear that you are going through the same hard times. Did your husband have a scan after the chemo and what was the result? I'm not sure what to expect when the six cycles are finished. My husband thinks he will have a break from chemo. Do they still go for regular blood tests? My husband was anaemic a couple of weeks ago and had a blood transfusion but mostly the chemo  has been delayed due to low white cell count.

    You mention that the tumour is bleeding. Does that make him bring up blood? Is he in pain and is he able to eat? Do you have family support to keep your spirits up? I was thinking your husband was probably still working as he is still young. We are lucky to both be retired as the hospital visits are so time consuming. I struggle to keep up with normal jobs, housework cooking etc.

    We walked up to town this afternoon just to get a newspaper and some fresh air. My husband does doze a lot but is better than some other weeks. With this illness you never know what to expect from one week to the next.

    I hope you have a restful Sunday.

    Best wishes

    Ronnie

  • My husband ( oesophagus cancer, mets to liver) was meant to have a break after 6 cycles ( finished December) but scan showed new tumors in liver so had to go straight into new regime, unfortunately we were told a couple of weeks ago it hasn't worked and he now has only weeks left. The cancer has spread around the outside of organs in his stomach plus a new lung one, and he has fluid build up in the stomach. He was diagnosed last April so not quite a year. He is only 44 and we have two girls to get thru this (8 and 12), it is exhausting and overwhelming to say the least, how do we all get thru it? And why  in this day and age can we send people to the moon and even other planets but not fix this thing! It seems ridiculous, but the horrible reality for so many of us, my thoughts are with u...

  • Hi plebbs,

    very sorry to hear your sad news, so very young , my husband was so poorly with the chemo he only managed 2 cycles out of 6 and wasn’t even able to get about in between, unfortunately my husband passed away on the 17th Feb, 3 months after diagnosis, I am still in shock, he became too weak to carry on with any treatment, we didn’t ask how long but Deep down we both knew it wasn’t good news, we found it easier not to know, we spoke about the end a little with the children on and off, about his funeral and his things that he wanted them to have, my husband told them every day how much he loved them and they did him, we spent the last weeks watching films 24/7 and made sure one of us was always with him, we were all there at the end, it’s really helped the children knowing how much he loved them and I know he knew how much we all loved and still love him, we are all trying to be strong but it’s also good to have a good cry together, stay strong for your children, I am taking each day as it comes and I talk to the children about how I feel, take any help that is offered to you xx

     

  • Hi, sorry to hear about your husband, it is such an awful thing to go through, and happens so fast and relentlessly.  I feel like I am trapped inside a horror movie where I know the end will be bad and I can't do anything to stop it.  Finding it very difficult to relate to most people at the moment, their 'worries' seem so trivial to ours, can't even imagine how the next few weeks are going to go, and actually don't think I  want to.. At the moment he is still able to walk, even ride his bike a little, he is a very active person and I know that is going to be very hard for him as he likes to keep busy.   Hardest thing I have ever had to do in my life, feel so cheated too of our future together as the kids get older, we were planning to travel again, maybe get a lifestyle block somewhere and move to the country, all those dreams gone now for this... and we are being helplessly swept along in it with no light at the end of the tunnel... Do your children live nearby?  It's a very lonely time isn't it

  • My son lives 2hrs away but is staying home for a couple more weeks, my daughter lives at home still, they have been brilliant but I am so lonely still, we were never apart, worked together and yes friends are visiting but you’re right all normal conversations don’t interest me at the moment, all these emotions scared, lonely, lost but I believe in these times do not worry or think about the future just concentrate on each hour and day as it comes, x

  • Hi Ronnie 

    Sorry for the late reply, how did your husbands scan go? 

    My husbands Marie Curie nurse phoned on Thursday. His blood pressure was still high. Anyway she asked what advice we were given on Tuesday by the oncology unit we attended. When he told her just told to go home and rest she wasn’t happy. She said he should’ve been told to go to the GP. She rang back ten minutes later giving him an appointment to see his GP. He’s on BP meds now. He’s ever so anxious about not being on his chemo. 

    He has an appointment on 13th with his oncologist. His radiotherapy commences for five days on the 9th  

    Take care

    Kuiper

     

  • Hi, yes that is good advice to take each day and make the most of it. I feel like keeping us all in a little bubble at the moment and just being all together on our own, glad your children are close to you, you are all sharing the same loss. Impossible to believe how different our lives were a year ago, if only we could rewind and stay there and this never have happened! I guess many people must have wished that in the past but time flies not stand still.. and its rapidly running out for us...x

  • Hi Ronnie,  

    We are due to see the consultant this week for the post chemo scan results, the aim was to put the cancer to sleep - after 3 rounds it hadn't grown  so fingers crossed the chemo has done it's job. 

    The bleeding is apparently because the chemo damages the veins in the tumour and it then "weeps". Hopefully we'll know what this means when we've been back to see her. He is now eating ok again and not bringing up any blood.

    I read everyone's posts and think that we are doing ok in this awful situation, and so many people are worse off than us. I just wish we could make it easier for all of our husbands. The treatment regime is harsh and i dread to think what they'll want to give him next - but at the same time it doesn't feel right not to be on anything all so confusing isn't it.  

    Take care 

  • Den, I am so very sorry to hear that you have lost your beloved husband.  My thoughts are with you and I hope that you are getting lots of love and support. xxx

  • Thankyou, yes I have support, its still early days and I have only been out of the house a couple of times, it seems easier to stay in our bubble (me & our children) even with my husband not here, but this week my daughter starts back to work and in a couple of weeks my son is back to Uni, it will be hard to get used to a quiet house x