Throat Cancer T3 N2 M0

[Jen]

Hello Everyone. Hello my name is Jen and my partner was diagnosed with throat Cancer back in March. My partner is a very private person and he isn't a talker but I am and I feel like we would both benefit from any support we can get. I have clinical depression and anxiety and I am now his carer - he was mine. The Cancer is located in the Pharynx, near the vocal chords but not the Larynx, and it has been caused by smoking (Now Quit!) The prognosis is good in the sense that they're talking about curative treatment. Chemo with Cisplatin and FU-5 (We have a rude name for the latter drug now 😉 ) and Radiation treatment is in progress. The onset occurred after a sore throat following a severe chest cold. The sore throat persisted and it took a while before the ENT was even able to locate it. It was after the third Endoscopy and a biopsy was taken that the tumour and Cancer was found and confirmed. A PEG was inserted about six weeks ago. Round 1 of chemo started four weeks ago. That went well in the sense that there were minimal side effects during treatment. Radiation started the same day. After chemo he developed a bit of hearing loss and tinnitus, but no nausea. The past week or so hasn't been too good. Lots of mouth difficulties, throat soreness, headaches, not being able to swallow, ulcers and thrush! The pain hit last week too. Pain that has required a lot of medication! Last Sunday night (just passed) he started running a fever and the pain was just incredible. He'd been unable to sleep properly for almost a week. Called an ambulance but due to a high work load they were unable to get to us. An hour later I rang a taxi and took him into emergency. By the time we got there he was febrile and at one point running a temperature of 40.2. I had been concerned that there would be complications as his pain was not being relieved by liquid oxycodone and fentanyl patches. He hadn't been able to eat and was losing weight (not good from a radiation treatment perspective), thrush was rampant, ulcers and mouth sores, a rash, enormous headaches and of course mucositis. I'm sitting in the hospital with him now. Treatment has been stopped. They can't find the source of the infection and the Dr's think he's had a severe reaction to the chemo and radiation. His temp is now normal but his pain is immense. It's so hard seeing someone you love so much in pain and not being able to do anything. The cancer is one thing but the pain... His pain was under control last night when I left (I felt bad leaving but hadn't slept myself for nigh on 40 hours), after I left he became febrile again and the pain was back with a vengeance. He had a syringe driver put in yesterday but the meds he was on weren't controlling the pain. They changed the meds and he's still on the driver with some very heavy meds. He is also on a drip for fluids through his PICC line and taking panadenine forte through his PEG. He now seems stable but still having some pain. He's been able to have two nutritional drinks through his PEG today but can't even swallow water. He's taking meds for the thrush and doing mouth rinses and his mouth looks so much better already. He is sleeping now, I am watching him but I'm afraid to leave in case something happens again over night. He is very stoic. I am so proud of him for going through this. I don't think that I could! I'm absolutely terrified of what the future holds. Now that treatment has stopped I'm even more terrified of the prognosis. The Dr's have stuffed up numerous times (not checking vitals, not telling us of side effects, not following up pain properly etc etc) Some of them have been wonderful having said that. They're hopeful that treatment will start again next week but minus the FU-5. This is going to affect the prognosis. Has anyone got any tips? Suggestions? Absolutely anything that might help us both? I want to do all I can for him. He is my world and I'm terrified for both of us at the moment. If you have read this far, I thank you more than words can express! I feel very alone at the moment, especially since he isn't a talker - not even with me and I feel that this has contributed partly to the situation he is now in. Best Wishes to everyone in this group. I appreciate how hard this journey is for anyone going through this. You're so brave and absolutely incredible! Thanks Jen

[mark2709]

Hi Jen, Believe it or not, I know where you are at. Check my profile to see my background story - similar diagnosis, but T2N1M0 and in the tongue, not throat. I never had FU-5 (the acronym just begs for another name, doesn't it?), but I had the rest. I managed to avoid a peg by the skin of my...tongue. BUT...the treatment delivered. I am here, and I am well again. Your partner's time will come, the nightmare will end. Be sure to consult your own therapist(s) often. Make sure they know what's going on, actively seek their support. The thing that also seems to be missing from your story is cocaine mouthwash. Ask the treating clinicians if it would be suitable. However, it would seem that your partner's pain, (at least at the moment), is worse than mine, because the patch and OxyContin worked pretty well for me. In relation to your partner's doctors, be calm, methodical and detailed in how you deal with them. Write stuff down if needed. Get second opinions if you want them. Always be polite, but don't take a backward step, and keep persisting until you get the information you want. Yes, it is much easier said than done. Ask me anything you like, and I'll try to help. I can probably also put you in touch with my wife, who was my carer. Best wishes, Mark.

[albert]

Best wishes to you and to your husband Jen. There are lots of supportive members int he community. We are here to listen so feel free to share anything you want to share during this difficult journey.

[albert]

Best wishes to you and to your husband Jen. There are lots of supportive members int he community. We are here to listen so feel free to share anything you want to share during this difficult journey.

[Jen]

Hi Mark and Albert and others. Thanks for your responses! Thanks so much for your response Mark My partner and I really appreciate it! I'd love to 'chat' to your wife and carer if that's possible! I thought I would update this thread for others info - hopefully they won't have to go through such an ordeal but just to let others know that since I last posted its quite incredible how far my partner has come! He has been so sick I haven't had time or energy to respond until now and I'll be sure to check out your posts! He's travelling a lot better now but still has a syringe driver with various meds to control his pain. Treatment was restarted after a break of a week for the infection to subside and the pain to be controlled. He's got another two weeks of radiation to go through and two more days of chemo. The Dr's changed the chemo regime so it's just Cisplatin now and instead of four continuious days of chemo, it's four days, (one day a week) of chemo - 2 more chemo days to go. The prognosis is still 'curative' but I know that things may get worse before they get better. I hope that I can help others as much as I've been helped by this wonderful community. Best wishes to All.

[Jen]

Hi Mark and Albert and others. Thanks for your responses! Thanks so much for your response Mark My partner and I really appreciate it! I'd love to 'chat' to your wife and carer if that's possible! I thought I would update this thread for others info - hopefully they won't have to go through such an ordeal but just to let others know that since I last posted its quite incredible how far my partner has come! He has been so sick I haven't had time or energy to respond until now and I'll be sure to check out your posts! He's travelling a lot better now but still has a syringe driver with various meds to control his pain. Treatment was restarted after a break of a week for the infection to subside and the pain to be controlled. He's got another two weeks of radiation to go through and two more days of chemo. The Dr's changed the chemo regime so it's just Cisplatin now and instead of four continuious days of chemo, it's four days, (one day a week) of chemo - 2 more chemo days to go. The prognosis is still 'curative' but I know that things may get worse before they get better. I hope that I can help others as much as I've been helped by this wonderful community. Best wishes to All.

[Jen]

Thank you Albert. I'll be checking in frequently I think. It's horrible that this has happened to us all but I'm very grateful for the support. I have wonderful family and friends but it's different when talking with people who are going through and understand all this first hand. Many thanks and best wishes!

[Jen]

Thanks Mark. I'm just about to send you a message to your inbox. I've read your profile and posts and I do believe that the are a lot of similarities between what you have been through and what my partner is going through. Thanks so much for being open and supportive. I appreciate it so much. It's not good that you've been through what you have but I am very grateful for your insights. I've just read that you have just had some more bad news with your sister. I'm so sorry and it seems that you have had such awfully bad luck in your family. I can only hope that you can support each other and empathise with each other during all this. Thank you for your kindness in such a difficult time and I'm sending you my best wishes! Be kind to yourself! PS I was just about to send you a message with my Facebook details but I can't work out how to do it as your message about this has disappeared? Will try and figure it out but this site is having a few hiccups I think.