Well here we are almost 5 weeks after the op that never was (failed Ivor Lewis for those who don't know). Husband has been home for 2 weeks however I made the call to get him readmitted yesterday. He cannot take anything orally at all due to the mucous that is coming back up every 60 minutes. We had a follow up appointment at the hospital yesterday and they gave him a choice to be admitted for fluids and electrolytes etc or go home. By this point he was practipractically delarious as he was so dehydrated, had no energy, contant dizziness and a very low bp. So I made the choice for him - he got admitted. By 10pm last night he was on his 3rd bag of fluid and already looking and feeling much better.
Anyway I digress. He is getting a stent fitted on Monday to aid with swallowing, earting and drinking. But just wondering if anyone knows how successful or otherwise the stent would be? Will he always be restricted to a soft mushy diet? We know his time with us is limited so we definitely want to make the most of it and he's determined to take me out for a lovely meal to make up for all the wedding anniversaries we will never have together.
Just looking for some advice or guidance from the lovely people in my phone.
Ps we have a repeat CT and an appointment with his oncologist at the end of the month. They are talking about trying herceptin. He's been tested and he would be suitable for it. Again anyone have any experience of this and perhaps how long it works for?
Thanks again
L
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Lucypuppy
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Hi, just had a notification to see if I could help with your question about Herceptin, well I have a Gastric Oesophageal Junction Adenocarcinoma to put full title! I was digonosed 5 years ago and i was told I would have approx 6 - 12 months as I am unable to have operation as I would be an open and shut case. I was told I am lucky because I am HER+ and therefore can have Herceptin and see how I go. I have Herceptin intravenously every 3 weeks and will do so until such a time as it does not work, I am doing really well, and do not have any side effects other than I have found I should not have any alcohol as even a half glass of wine makes me faint out, but that is nothing in the great scheme of things. I hope this has answered some of your question but always get back to me if there is anything else I can answer for you. Best of luck.
We also have a member of our support group on HER+ and he has been on it for over 3 years and his doing well. This treatment is keeping everything stable. Another member in the group has had a stent fitted 3 month ago and as far as I know is not restricted to soft foods but the hospital will advise.I know it's all been bad news for you both but on a positive front your husband his Her+ and that is good newsHopefully his treatment will start soon
Thank you so much Phil and Patsy!!!Very reassuring.
Patsy can I ask are you also taking another of the platinum based chemotherapy drugs along with the herceptin? Husband was on ECX regime pre-op so just wondering if they will stick with cisplatin or change it to something else.
Phil thank your so much for listening to me ramble on in the early days of my husband's prognosis after the failed Ivor Lewis operation. The information you gave me certainly helped me plant some seeds with the team looking after my husband. I believe being armed with the knowledge you gave me over the phone certainly my helped me get my point across.
One bit of good news this evening is that his kidney function has returned to normal but he has to stay in hospital until he gets his stent as we can't physically get enough fluid in to him through his jej.
So the plan is to build him up and get him recovered from both his operations so he's in the best possible place to see the oncologist and get treatment started.
Thank you once again. Means a lot that there are people out there so kind and caring and willing to share experiences with others. 👍👍👍
I couldn't comment earlier as I have no experience of either stents or Herceptin. However, I'm pleased you've managed to get some pointers from some of the other lovely people on this site. It's truly wonderful how everyone is so kind and supportive.
Wishing you and your husband all the very best for a successful resolution. Thinking of you, Kate x
Sorry for late reply have a lot of things going on at the moment (not to do with cancer thank goodness) but to your question, I am on Herceptin only I started off with Cisplatin for 6 rounds in the beginning but then went on to Herceptin only and have been going well ever since. I occasionally have acid reflux but have found if I steer clear of oils that is not too much of a problem only perhaps once or twice a month. Glad your husband is having success with the kidney function. Keep positive it really helps, we just don't know what suitable treatments are around the next corner.
Hi Lucy - sorry i didn't reply before now (the dreaded virus has visited our house!) Don't worry about the stent - my husband has had one for over 3 years and is able to eat a wide range of foods with care. It can vary from person to person, but chew well, take small mouthfuls and increase the range of food bit by bit. He can still struggle with some things , like meat and some types of bread, but nothing is really off limits. Most hospitals produce booklets with advice, and I was lucky enough to proof read the new one from Betsi Cadwallader trust (produced by Wrexham Maerlor dieticians) which was excellent. Good luck to you. x
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