Hello All,
I am post treatment for BOT dx in Mar this year. Had a spread to node which was removed, then cysplatin chemo x2 and 30 RT treaments. Had a peg line fitted before treatment which I hate but it's kept me alive. Initially I couldn't talk or swallow at all but after about a month (my treatment ended in JUly)I began to be able to swallow a bit. Progressed to soups and ready brek (do you have that in America? It's a fine oat cereal)but I've gone backwards in that it's incredibly painful to swallow. So I pretty much don't except water and 1 small bowl of reday brek a day. Saw my oncologist y/day for a camera down my throat and she said, no ulcers so advised to just get on and try food despite pain. Saw dietician immediately afterwards and she said not to try eating if too sore! I have morphine (oramorph) which I take with regular painkillers but it doesn't help much. I also have a lot of ongoing mucous. Has anyone else gone through this and what do you advise please? Thanks.

Hi Lynne- I am sorry I am of no help with this as I havent even started treatments yet, but please rest assured that others will be along who will be able to offer you advice. This site has been a God-send for me. Best of luck to you on your journey- Lyn

Hi Lynne, welcome to OCF. There are many survivors who have gone thru similar treatments. Recovery can take a long time. Dont despair! It really will get easier. Swallowing is something that if you dont do it, your muscles will forget and have to be retrained how to do it again. This is why even with a peg tube we always advise patients to swallow every single day even if it hurts. I think your reday brek sounds like our cream of wheat warm cereal. If it is, I eat that every single day. You are only 2 months post rads so Im not surprised that you still have pain and sores. A diet that is high in protein will help your body to recover quicker. Here we have some high protein whey powder that can be added to drinks. Keep doing what you are doing and begin to push yourself a little more to eat even a few bites more every single day. Eventually you will get there and be able to be free of that darn tube.

The gunky mucous will usually hang around for a few weeks then it will turn into dry mouth (get those swallowing muscles ready to drink tons of water). Recovery from oral cancer treatments can take months for a full recovery. In fact it can take a full 2 years. Doctors say it takes a month of recover for every week of radiation so you see you really are doing pretty good. Make small daily goals and gradually increase them until you are pretty close to your normal routines.

Best wishes with your recovery!

I did reply to your post before, however I removed it. I'm very new here so I felt others were much more qualified to give you an answer.

I completely agree with what I see above . It will take some time, but hang in there. I'm only a couple months out of chemotherapy and radiation. I could say I'm still affected by them, but not a 1/10th as much as the first couple of weeks during/that followed.

In my personal experience morphine isn't a very effective drug. Maybe you could talk to you doctors about that as well. Oxycodone was much more effective for me. I was able to eat full meals with little pain during/after radiation. but I'm no doc. For you it could be out the question.

Lynne, on your profile it said you are a health walk organizer. Wondering about the difference between our countries. When you are feeling a little better I want to ask you some questions if its ok with you.

Garrett, you may be new but you are a survivor. After going thru everything you have, you have lots of knowledge that can be helpful to many people. Dont hesitate to share your experiences with others, everyone's opinions are useful here. Glad to have you aboard! Maybe next year you can attend the Philadelphia Oral Cancer Awareness Walk. There is a big group of us from this general area from Philadelphia to NY. We get together at the walks and swap stories. Its a wonderful bonding experience.

Thanks for your replies Lyn, Christine and Garrett I do appreciate them.
I know it's early days but as I was swallowing a few weeks ago it feels tough going what I perceive as backwards! I am vegetarian and was managing spinach and poached eggs and soft veg. I find that a lot of suggestions from my dietician are for sweet things like ice cream, custard etc but I never ever really ate these before as I prefered savoury stuff. Perhaps that's all going to have to change? I also feel quite off put by the idea of eating some foods now, like an aversion or something. Ice cream which I was eating just prior to my treatment (unusual for me as I didn't ever really eat any sweet stuff other than fruit before in my life)is something I can't face. Does anyone else get this aversion feeling??
Since posting this I've realised there's a section for this type of query and have read a few of them and have realised just how common this type of issue is.My oncologist made me feel like I should be able to eat but believe me the pain when I last tried (a soft egg) was terrible for about 3 hours with blisters that I could see at the back of my throat.It's scared me and I feel reluctant to try again at present.I'm being referred to a speech therapist this week, so perhaps she'll have some suggestions.
I'd be happy to talk to you about the health walks Christine, ask away!

P.S to my post a few minutes ago! Just wanted to say that during treatment, which was so harsh, I had to be taken into hospital for 25 days as I felt so ill, like a lot of people here I now realise. I felt so alone, not having met or talked to anyone else going through the same or similar thing. We have a support service here called Macmillan and I asked if they could put me in touch with someone else going through this and there was a lady who was a few weeks in front of me, just back home who, like me had terrible problems with mucous and swallowing. I did text her for a while but she's hit hard times and can't even swallow water now and has stopped texting me. Last I heard she's back for an operation as her oesophagus has fused or something and that's why she can't swallow. Can you lose your swallow even if you have it ok for swallowing water, or do you need to swallow solids to keep the ability for the future to swallow 'normally' again??

Lynne, I'm sorry to read about all you're going through. I too did it basically by myself albeit in the midst of a huge city. It's not easy, but you have all of us here now to help.

Everyone has given you great advice. I've heard that swallowing can indeed become a lost art if not kept up, unfortunately, but I'll let those you know about this subject comment.

How well I relate to the pain of swallowing. Sometimes it was just about unbearable, and like most people I lost a bunch of weight during treatment. But the sores will heal. Do you have access to viscous lidocaine? I found it was the only thing that gave me even a modicum of relief, albeit mainly for sores in the mouth and not down the throat. But you might ask your team about it because it can't hurt.

I too am a vegetarian. But unlike you I have a huge sweet tooth. I can certainly relate to wanting some foods and not being able to even think about others. I basically didn't eat anything solid for 6 months beginning about the second week of rads, and I consider myself to have had it easy.

Keep us posted. Keep trying to swallow, even if it's just water. Also let us know how things went with the speech therapist. I found that it helped me quite a bit.

My thoughts are with you.

Thanks for your reply David. 6 months, what a long time - that can't have been at all easy, makes me feel 'bad' to moan about my situation. I don't know what else is available to me in terms of meds, the one you mention I've not heard of but shall make an appointment with my GP to find out if I can try it if it's available, or if not see what she thinks about changing cos the morphine simply isnt doing it any longer. I suppose I've become too accustomed to it and it's no longer efficacious. Today I got a call from Aberdeen hopsital to say I've to go in for a Pet/Ct scan next week to check for cellular activity. Had one to help dx where my cancer was back in March as originally after finding it in my lymph node they thought it was a primary in my thyroid, then of unknown origin for about 2 months. How did the speech therapist help you David? I'm not at all sure what to expect. Take care.

Lynne,
Just remember that often your first PET scan will show a false positive, so try not to freak out too bad if that happens. It happened to us and then an MRI proved the spot to just be inflammation. It was extremely stressful for a few days, and it has happened to many of us. Just FYI!!
I think the medicine he is talking about iis also called the "magic mouthwash". Works great for a short term fix while you eat/drink.
Kathy