I have tried to message you twice now but the service crashed so I am hoping you read this. I looked back over your postings and unfortunately, you have had a lot of experience since being diagnosed and I really hope I can persuade you to come and talk to us on CC? I was unaware of any policy regarding the site but had simply noticied last year that many people would post that they had a reoccurrence and then you would never hear from them again. I contacted Alan as I felt there should be somewhere people who were facing death should be able to post without worrying about any negative affect on others. Alan contacted HU who added CC to their communities.
Aa someone who has faced the emotional and physical problems we are all sharing and for several years now, your input would be really welcome. Also it would be good simply knowing how you are getting on right now.
Best wishes,
Charlie
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Charlie36
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I do look in and if there is anything useful I can add to a thread I do. There is more activity for those us at stage 4 on the MacMillan web site and it is there that I do most posting.
It is a group in cancer type which they have called Gullet (Oesophagus) Cancer.
There are groups specifically for stage 4 suffers such as "Living with incurable cancer" but I do not find them helpful. I prefer to deal with specific problems for our particular cancer that we may come across so I really only read and post in the Gullet cancer forum.
I am feeling well but sweating on my scan results. I see the onc on Thursday afternoon.
Much better than I hoped. My last scan showed the existing nodes growing and new ones appearing so I was worried. This time all the existing nodes and the main tumour were stable. There were two new ones, a lymph node and a tiny nodule in a lung. This is a worry as it is the first time it has spread to a major organ but it is tiny and hopefully, as all the existing nodes are stable, that it will also be slow growing. I was offered chemo, irinotecan and 5FU, but have decided to wait another 3 months without treatment to see how it goes.
So glad things the scan showed stability in the main tumour and existing nodes John, though the appearance of others is not what you wanted to hear of course. I have never heard of irinotecan and 5FU? Are they chemo drugs? I just had 8 weeks aggressive rt in my 2 tumours and while I got a substantial shrinkage in the throat, the stomach didn't respond nearly as well although it did appear to be "dampened down" and no larger. I have a scan mid April. Have you had rt at all? Can they not treat the one in the lung with rt? How are you with your general health and eating? I find the latter causes me big problems but don't have to go to weight watchers! Are you under a good Oncologist? You must be pleased the day is over, it's such a stressful time however hard you try and put it to the back of your mind, it is for me anyway but I may just be a wuss
Irinotecan is a more modern drug than cisplatin and is often used as the first choice drug in the US and on the continent. 5FU is an older drug. It is given by infusion and is often replaced by Xeloda (capecitabine) which are tablets which turn into 5FU in the tumours. I have not had RT as the main tumour was too big to treat. I don't have any symptoms so I had not required any local therapy apart from the laser to improve swallowing. The nodule in the lung is only a tiny 4mm so does not need any treatment yet as there is no symptoms to treat. If it grows and causes problems i will probably have RF Ablation or maybe RT but that is all in the future. In the 3 1/2 years since I was diagnosed the only time I ever felt ill or anything was a couple of days after the chemo infusions on the second time round. I even had a pulmonary embolism without knowing! So I am fit and well and eat normally with stable weight. I now have another 3 months without chemo and the weekly visits to the hospital so I can plan some holidays. My Oncologist is a nice man, though it was his assistant I saw on Thursday and she is also very nice. They are both knowledgeable, straight talking and listen to my concerns and patient in answering any questions and we reach decisions jointly, e.g. should I have treatment now or later. I do see other people, for example I go for anthroposophical medicine and hyperthermia treatment and also see another conventional cancer specialist at a different cancer centre once or twice a year to discuss my future and any potential treatments which I find reassuring and helps relieve the stress from living with untreatable cancer for so long.
John
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