Stage Four diagnosis - is there any way back or are we just holding back the tide?

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HI all,

I love reading all the positive comments from everyone on here.

I was referred to the One Stop Shop at St Thomas' in September to assess whether chemo and surgery or just surgery was the way to go when I received the devastating news that the PET Scan had picked up metastases in my liver which had not been seen on my Ct scan. No surgery and referral for palliative chemotherapy only.

The consultant Oncologist floored me not only with his prognosis but also the cold, blunt way in which he delivered it. Thankfully the lovely oncology nurse reminded me that his data is based on averages and that I am not average ( age, general health, active lifestyle, great support from family and positive mental attitude all being on my side). 

Just starting my fourth cycle of CAPOX treatment I feel better than I did before I was diagnosed and am suffering minimal side effects, still working and coming up for a review with my oncology consultant - thankfully a new one - early in the New Year.

After all this preamble I guess what I really want to know is whether I could be looking at a reversal of any of the existing tumours or the best I can hope for is no further spread? I know we are all different and have different experiences but I would really appreciate hearing from someone with similar experience to mine.

In the meantime I wish everyone a Merry Christmas and all the best in the New Year.

  • Oh yes you told me that I'm so sorry. I don't know why they talk to patients like that. Maybe they are worried about promising too much but everyone is different and many patients defy the odds and recover well.

    Like you say he hasn't even started treatment yet. Just try to stay positive and strong and take things day by day.

    Best wishes

    Dean

  • Yes Carole that is so true. It's not nice to hear negative things but staying strong and positive is the best way forward.

    Hope your treatment goes well

    Best wishes

    Dean

  • Hi Carole,

    How are you? How is chemo going?

    My husband started chemo last Thursday, he is having a rough time at the moment.

    Angie x 

  • Hi Angie

    Sorry your husband is having a rough time at the moment.

    I have had 3 cycles so far and am due my 4th next Tuesday. I think the first one was the worst one as felt fatigued and nauseas and terrible pins and needles up my left arm where the cannula was fitted, but each subsequent one has been manageable. I don't feel quite so fatigued and the nausea is much better. I make sure I get out in the fresh air for a walk every day and it really does help. I also find a week or 2 after the infusion I have more energy, so hopefully your husband will start to improve as the days go on.

    I hope this helps. 

    Carole x

  • Hi Angie

    Sorry to hear that, the chemo Is very tough my first one after the op wasn't great and I'm back in for round 2 today, yay.

    You just have to ride it out and it is not easy I know. I'm sure you have but talk to his cancer team and they can help to reduce side effects.

    They have reduced strength of mine so I'm hoping this will help.

    Hope he feels better soon

    Best wishes

    Dean

  • Hi Carole,

    Glad to hear you are coping well.

    It's good to hear things might get better for him on the next cycle.

    He has felt a bit better today so I hope he is at a turning point.

    I am going to try and get him out for some fresh air it will do him good.

    Do you get diarrhoea? he has suffered with this the last couple of days, if its not that it's constipation he can't win.

    Take care

    Angie x 

  • Hi Dean

    How was your chemo today?

    Tony has felt a bit better today but still has stomach pain and diarrhoea, do you get this?

    He is taking his antisickness and diarrhoea tablets they gave him so hopefully it will settle soon.

    Chemo is very tough, it has been hard watching him suffer, I have to keep telling him to keep fighting and think how it's killing the cancer.

    I can't imagine what you are all going through fighting this horrible cruel disease.

    Love to you all.

    Angie x 

  • Hi Angie

    Hope your husband is feeling a bit better. Fresh air really does help but diarrhea is part of the chemo side effects I'm afraid I get it quite often which kind of rules out going out for meals.

    He should have tablets for it though but to be fair they don't always work for everyone 

    Will see what happens after this cycle I'm hoping it will be better

    Best wishes

    Dean

  • Hi again

    Well chemo took a while today, 9hrs in the ward as chemo didn't arrive until 12.30 and I was there at 9.30 but it happens nothing you can do about it. All went well though and it's been reduced to 50%strength so should be better

    Glad Tony is feeling a bit better and hopefully the tablets will help.

    Pump comes off tomorrow and then the fun begins again

    Best wishes

    Dean

  • Hi Dean 

    Pleased to hearthat you are moving closer to the finish line x it's certainly a long journey !!

    Andy has a fitness test today he's worked really hard so we're hoping to get a date for surgery soon xx The kidney scan showed no problem thank goodness.  We're expecting to be given a liver shrinking diet today.

    Best wishes and i hope the chemo symptoms are kinder to you this cycle.

    Take care vonn