Well, I was diagnosed in September and have just finished neo adjuvant chemo and radiotherapy. They hit me as hard as they could so let’s see when I get my first scan 24 Jan. I was unable to eat or drink anything from soon after treatment started so have intestinal feeding tube. Not much fun, as I have it on all day and night pretty much. I miss eating and drinking with my wife . I am permanently hungry but every half hour or so I have the desire to expel the contents of my throat into the sink. This started with a foul liquid, then seemed to change to this glutinous sticky saliva, where it remained until last few days now it’s turned more like phlegm. Sort of greeen yellow. I haven’t dared try and eat as this hasn’t worked any other time and has caused a lot of vomiting that has seen what I attempted to eat returned over several hours, with the original taste turning somewhat foul. I am pretty fed up with this as quality of life to be fair. I do remain positive , and I shall lose my stomach and half œsophagus in the next few months and hopefully from there I can regain eating function. The chemo was full dose all the way through and the oncologist was pleasantly surprised that he didn’t need to tone it down at all as my bloods stayed good. I am 52 male and pretty active, cycling thousands of km a year type thing, though was always a tad overweight as also love eating and drinking ! Do I miss that now!!! I just wondered is any others had had similar experiences to me and were they able to eat at any stage ? Thanks for listening . Good luck to everyone else
Hey azbug....sorry to hear you're having a tough time with it.
I consider myself to be quite lucky in some aspects because I've always managed to get solid food down, from diagnosis to the beginning of chemo it became more difficult & distressing to eat, but since I've started chemo I've felt swallowing improving & less aware of the tumor
My cancer is inoperable as its wrapped itself around my aorta so I've agreed to the scope2 trial where I'm getting large doses of chemo in 3 week cycles, 1st day getting cisplatin on a drip then 3 weeks of Capecitabine tablets...I'm starting the 3rd cycle on Monday along with the beginning of radiotherapy with the dose at 60Gy rather than the usual 50Gy....I was basically terminal so thought sod it, what have i got a lose.
I'm really starting to believe I'm going to be in the lucky 20% to actually get through this without surgery....a long shot I know but you never know.
So far side effects have been minimal apart from a little sickness & nausea....though the wind has become hilarious in my opinion lol.
I wish you well fir the remainder of your treatment & a happy new year
Cheers Neil
Hi, if it was just what I used to describe as clear mucus rather than thick saliva, I was going to suggest taking an anti histamine pill. That stopped the mucus for me, but if it's green or yellow that suggests a possible bacterial infection. You should contact your medical team for advice and don't take pills before getting advice. I know that the anti histamine pill has worked for someone else, but I stress it was clear mucus, not coloured phlegm. Good luck and kind regards Frank.
Thanks for the message, Neil. Sorry to hear that you are in a tough situation too, but sounds like this trial gives some hope. 20% is a lot lot better than zero, so fingers crossed for you and I really hope that you will get through this.
i was disappointed not to get the easing of swallowing that you seemed to obtain. It makes me feel perhaps less confident that all this chemo and radio has had a positive impact and reduced the tumour, but the oncologist and radiologist didn’t see it as necessarily negative. I am not so sure, but I remain upbeat about it all, just finding it tough to endure this same thing every day. Mouth filling with saliva, and periodic vomiting and constant desperate hunger! (Despite receiving nutrition and water via an intestinal pump). I find myself spitting into a bowl constantly, if I don’t do that it gets very uncomfortable quickly and I have to vomit more frequently! If the op is in 3 months will be such a drag getting there if nothing changes. Fingers crossed it changes.
please let me know how you get on . Really hope you get a bit of luck!
regards
andy
Hi frank and thanks for the message and the anti histamine idea. I am slightly confused about all of this so will speak to the hospital team. Like I say, I cough up phlegm from the lungs that is white. But this that I vomit is greeny yellow. I have read a lot that the stomach has mucus and bile in it that is greeny yellow. Maybe there is some gap and I am bringing that up, but then again I am unable to drink or eat so that seems unlikely. It must be coming from the tumour area. Thanks again for the advice .
regards
andy
Hey Andy...thanks for the reply, sounds like you're having a really shit time with it, have you looked into herbal remedies....I've been using CBD oil too & I'm convinced its why I'm having very little side effects & who knows?...it could be having an effect against the cancer too....theres evidence to support it.
Just a thought mate, its worth a try
Cheers Neil
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