Last Flot tomorrow, CT scan on the 1st Feb

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Hello 

I have my last FLOT tomorrow, 4 in all, I have also have 2 rounds of Carbo and Etoposide. I have my CT scan on the 1st Feb as they plan is to operate so I have fingers and toes crossed they I will still be on this pathway.

The Flot has been tough as people say, the Oxy-legs were terrible!! the two week turn around has given me about 3 days of normality. I would like to thank those that offered side effect advice as it really helped me to be proactive with the Meds.

The change for me is  from Oct to early December I was not able to eat food, shakes only. I am now eating normally, I have attempted spicy food, like a curry Heart eyes. I find I need to eat more often or I get like an empty discomfort, not sure what that's about?  My sternum feels sore sometimes also? fingers crossed these are gastral related to the growth but I guess it must of shrunk as I can eat.Grinning

I am so looking forward to some weeks without Chemo but also apprehensive, it will be back to that waiting place, and this is it, which pathway? I wish I had not been told IT was high grade, this bit really sticks in my head!!Fingers crossed

What lovely blue skies I have in the south at the moment, beautiful Sunny

  • Hi Vonn and Andy

    Saw my original oncologist today who explained things a lot better.

    I will be on immunotherapy and chemo. The chemo is 4 rounds over 3 months and the immunotherapy is for the full 6 months. He gave me a lot more hope in that the immunotherapy has had a lot of good results and they have caught it early. Even though histology was good after the op a small amount of cancer was probably missed and this is now invading the liver as it's the next organ after stomach removal.

    They obviously can't give any guarantees but this cancer maybe possible to manage. No one can say for how long but I'm going to fight all the way.

    Glad Andy is managing ok at the moment, hope it continues

    Best wishes 

    Dean

  • Hi Jennie

    It went well today in that my original oncologist saw me and was very hopeful that the immunotherapy has had really good results fighting cancer and the area on my liver is very small as has been caught early.

    No guarantees because you can't with cancer and everyone is different. It's given me something to hang on to and if it works it could give me a lot more time and I'm going to keep on fighting for sure.

    Hope you are feeling ok and thank you for your kind words, we are all in this together

    Best wishes 

    Dean

  • Hi CB

    It went quite well with the oncologist today. He said my next treatment of immunotherapy and chemo could if effective manage the cancer and give me more time which compared to what they said last week gives me a lot more hope.

    I'm glad you are getting things checked out as the oncologist today said even though my histology had been good some cancer may have been missed. It's such a difficult disease to try and cure or manage but I feel a bit more hopeful now.

    Hope it goes ok my good friend 

    Best wishes 

    Dean

  • Hi Alasdair 

    Hope you are feeling better my friend. This cancer really is a tough disease to fight

    Saw original oncologist today who gave me some hope in that the immunotherapy and chemo I'm on next has had a lot of success with a lot of cancers.

    Its still going to be a tough fight but I'm up for it. Let's do this together we can all help each other

    Best wishes 

    Dean

  • Hi Dean,

    That certainly sounds a lot more positive than what you were originally told. I have read on this forum about people having very good results from immunotherapy so I hope you will be one of them. As you say, they caught it very early which is always a good thing. Thank goodness you were on the trial and got the scan done. Worrying though for those of us who aren’t. Is it more FLOT chemo that they are suggesting or something different? Don’t forget you have the Tour de France to go to next year so you can’t miss that. Keep on fighting. Best wishes. CB

  • Hi CB

    No it's not Flot it's a combination of chemo/immunotherapy via a cannula and tablets. They said it shouldn't be so aggressive as the Flot so I'm hoping side effects won't be too bad. It is better news for sure and yes I really want to go to Tour de France next year and also do a charity bike ride to raise money for cancer research.

    Hope you can get a scan or endoscopy to check your symptoms.

    Best wishes 

    Dean

  • Hi Dean

    So pleased to hear that you have better news today I'm sure that must have given you and your family a big boost xx

    We look forward to hearing more positive news from you soon. 

    Take care of yourself 

    Love and best wishes 

    Vonn +Andy 

    Xx

  • Evening CB

    Not long ago and I would have been soundo at this time of night. Yes indeed I do have feelings and I am, “what’s that” silly ones are actually feeling my bones and body without 3 st of fat wrapped round it Joy. On a serious not, yes I have actually used the breathing apparatus, when I go for walks I try to remember to fill my lungs several times. I still have numbness on my right side and I have weird sensations around my right side. I have spoken to the team as it did worry me, I have been assured it is the healing process of the muscles and nerves. I do not know what I would do without the team. Having check ups even if it is reassurance is a good thing, Was that your first chemo or post op chemo when you had those full feelings? 

    Swimming is good, I am self conscious of my skinny legs, flat bum and hurried wrinkly skin with the rapid weight drop but I just say, to hell with it, once I am in the water it feels good, I get out of breath swimming but in a good way, my scares are covered by my swimsuit. Once you have done it once you will be fine. I was not a water babe, disliked it even, now it is peaceful and so relaxing. 

    Sunshine in November, just what’s needed before winter sets in, will that be a year from the start of your chemo? 

    now it is time to sleep, nite 

    TC, Jennie SparklesSunflower

  • Evening Dean

    This is good news, so glad you were able to see your Oncologist and get a better understanding of the situation, I can feel your fighting power coming of the page, Punch tone1. We are lucky to be on this trial, seems unfair for those that cannot be offered it. Let’s hope the outcome is for regular scans like other cancers get.

    It is also good that you can have immunotherapy as some people cannot? I am not sure who can and who cannot? 

    So glad it has been caught early, the chemo will blast it. When do you start Dean.

    I am going to get some shut eye now

    take care, Jennie SparklesSunflowerSunflower

  • Morning Jennie

    The trials like everything probably comes down to money and which Trust can offer it. Yes I agree in an ideal world all patients should be given the option as early detection is vital.

    I am lucky that I am on the trial and also eligible for immunotherapy as some cancers can't be treated with it.

    I should start before the end of the month and I'm keen to start asap to start killing the cancer, the fight goes on and I'm staying positive. At least I have a glimmer of hope

    Hope you are feeling ok today

    Always here for you too

    Best wishes 

    Dean