Onset of severe symptoms - any warning signs?

Hello Rosiee (Rosiee)  

I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying, your post will be "bumped up" to the top of the page and I hope seen and answered by other members of your group.

I do hope yo do get away for a holiday , a decent holiday is great to lift your spirits and put your cancer diagnosis to the back of your mind.

Best wishes - Brian.

Hi I have stage 4 inoperable cancer which has spread to liver and spine.

my tumour is well advanced at 14cm . I was diagnosed in November and by early December before my chemo started I had difficulty drinking and swallowing. I was admitted through A&E to have a stent fitted which was a game changer for me as chemo has since knocked the cancer back.

The swallowing difficulties coincided with capsule pain from liver and back pain from my spine so the signals were clear I was in trouble and they came on quite quickly.

However everybody is different and will depend on your current grading and where it has spread.

i would ask your oncologist who will obviously have a better picture. 

I hope this has been helpful 

Dear IPJ

I really appreciate that you have taken the time to reply to me when you are so poorly yourself.  I hope you continue to respond well to chemo. 

Oesophageal  cancer is so unpredictable and as you say everyone’s case is different. 

My question, as you probably realised, comes from trying to “listen” to my body inbetween 3 monthly scans.  Your reply is helpful in that in your case there were signals (pain) telling you something was not right. 

I have “scanxiety” this month as a CT scan is due.  I’ll discuss then with my oncologist how many more months I can plan ahead for. 

thank you again for replying and every best wish that your treatment continues to remain effective x

Hi Rosiee

My husband has inoperable OC, his symptoms came on extremely quickly, well, maybe the symptoms that alerted him to there being a problem came on quickly. He had for many years suffered with heartburn and indigestion, which consequently lead to this cancer diagnosis.  At the point of diagnosis he was given a prognosis of 4 months without treatment, and 1 year with, which as you may imagine is extremely frightening.  But the treatment and my Husband had other ideas, so like yourself he  has had certain treatments that have worked, even though only partially.  

You mention that it is only a matter of time, and I suppose in many ways you are right, it really is a unknown time frame, and there is so much that we want to do, so I really wanted to say "just do it!"  

Since his diagnosis, we have been on several holidays and have others booked, we live as much as possible in the moment and live our best lives. Diagnosed with such a poor prognosis back in May 2020, no-one could have imagined that 5 years later he would still be defying the odds. Anything is possible. 

I hope you get to have many great adventures. 

Lowe'

Dear Lowe

Thank you so much for your reply.

Your husband’s story is inspirational for those of us losing sight of hope. The initial prognosis was very poor indeed so it is truly remarkable that he is still here and you are both enjoying holidays and quality time together. Long may it continue. 

i am feeling quite well still. I am enjoying the beautiful weather we are having and spending time reminiscing with friends and family. So nice is the weather at the moment I perhaps do not need to travel too far away from home. 

Best wishes xxx

Ah bless you, I agree, the weather is great!

Whatever you decide, just enjoy every moment

Lowe'

Hi Lowe 

it’s great to hear that your husband has been able to beat the odds.

inwas given a similar prognosis in November  2024 and I am just finishing my 12 session Folfox.

can I ask whether immunotherapy was part of the treatment (I was not suitable) but it seems it has had some excellent results.

im helping for the best but preparing for the worst it’s not a nice position to be in but maybe there is some hope that the 12 months is pessimistic?

thanks for sharing your experience 

Hi,

My dad was diagnosed with inoperable stage 4 oesophagus cancer in December 23, with spread to liver. His tumour was bulky, wrapping itself around his aorta. We didn't want to hear the actual prognosis, but reading between the lines from the consultant, it wasn't good. We were offered palliative chemotherapy only at this stage. 

He started off with 6 sessions of Capox which shrunk the liver as this is non existence now but did little for his oesophagus tumour. By the end of chemotherapy he was back on a liquid diet and in tremendous pain with his back as the tumour was pressing on his nerves. 

By this time he had lost over 6 stone. 

Our consultant then offered him 10 sessions of radiotherapy to see if this would help with the back pain, it was brutal on the body as he suffered burns to his back but was a game changer. By the end (finished in October 24) he was able to eat all foods again. 

December 24 ct scan shown no signs of progression in oesophagus tumour. 

Consultant wanted to start him on another cycle of chemotherapy starting in January 25. 6 sessions of Paclitaxel. 3 weekly sessions with a week break. Mid scan shown slight reduction in oesophagus tumour, no signs in liver but a spot appeared on his hip. 

We are on session 5 now and my dad is still eating well and gaining weight. He has actually been discharged from his dietician. 

We are currently awaiting to hear if he can have a blast of radiotherapy on his hip as the back pain is now under control with the help from palliative care but we can not control the pain on his leg which palliative care is thinking it's from the hip as it must be pressing on the nerve. 

We are 1yr 5 months since prognosis and if it wasn't with the pain in his leg my dad is doing well. 

Sorry for the long reply but hopefully this gives you some hope that with the right treatment it can put this nasty disease at bay. 

P.s my dad was also not eligible for immunotherapy. 

Kayleigh. 

Dear Kayleigh

it is so kind of you to take the time to reply to me.  Thank you. Yes your Dad’s story is one than does  inspire hope. For as you say, the outlook for him in December 23 was bleak.  I hope your Dad’s treatment continues to be effective and the pain in his leg is soon managed. 

Best wishes xxx

Hi IPJ

I am glad to read that you have had some excellent results from the FOLFOX,, Dal started on that initially as he was told that he was HER2 Negative, after a few months though, suddenly he was HER2 Positive and could have immunotherapy. 

If you click the link to the blog in my profile and go back to the beginning it gives a bit of a run down of how Dal's treatment changes. 

The thing I have found is, in the last 5 years, the changes in how they treat O/C has come on leaps and bounds, I do hope that you continue to see excellent results and if possible stop trying to prepare for the worse, because although you need to be realistic, there is so many different ways things can go, that it really seems impossible to prepare.  I spent months and months just waking in the night and trying to see Dal breathing, watching the sheets move up and down, I nearly sent myself mad, trying to prepare, when I think no matter what or when it happens, I can only do my best as I go through it, just like everyone else does..  

We look forward, we make plans, we live a better life because of the diagnosis, we have no time to lose, I hope you can do the same.

Wishing you all the very best 

Lowe'