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

Lynne, in my case they did some swallowing tests, which consisted of me sitting in a fluourscope-type x-ray machine while swallowing various liquids and solids. It was quite amazing when they showed me the video afterward - could actually see all the structures in my neck and throat as the stuff went down.

That of course was just diagnostic. Based on that it was determined that the problem wasn't too severe so all I had to do was exercises - various sorts of tongue things, words to speak. All designed to get things moving again properly. After not too long the problem resolved itself, although I also had concurrent problems lower down in the esophogus, including a web that had grown across it. I gather that having throat dilations isn't all that uncommon for people who've had rads to that area, and I've had perhaps 6 or 8 of them. Though none for a year now so maybe that's history.

And please don't ever feel bad about moaning! Go ahead and moan. As I said, I consider what I went through barely a scratch compared to some of the incredibly brave and resilient people who post here. I always use the word hero to describe them, and I am in awe.

And as Kathy says, don't be too bothered if the scans light up. My docs waited 6 months before scanning me.

Oh and I'd heard about the magic mouthwash but only after my treatment. People tell me it helps. I only had viscous lidocaine and various sorts of saliva replacement things - Caphosol comes to mind although as I recall it was very expensive and maybe not available where you are (?). I dunno if it helped or not. Swishing with baking soda/water several times a day is always a good idea.

Thanks for the info Kathy and David. Interesting to hear what you say about possible false negatives from what may be a scan too soon. Ummm, don't my team up here know about this??
The info on magic mouthwash is useful but what's it's generic name please anyone?? It sounds like a cousin of magic mushrooms!! I've got a replacement saliva spray , not sure what it's called, I'm just ready to crawl into bed, so will investigate another day. However I've hardly used it as I've not really been eating since I had it..time will tell if it's any good for me but it's certainly very useful to get names of other meds that people have found helpful to ask about. I will try the baking soda meanwhile.
Can anyone tell me what the difference is between a quick reply and a reply? Not sure if this will post in the same way..I'm not a user of forums so am having to learn all this as I go along here.
I'm giving this site web address to another lady over on the west coast whose oesophagus has closed over, she texted me today after a long gap as she's been having various ops to try and get a tube in to allow future stretching but the op's been unsucessful, so she's fairly despondant. I hope she'll have a look see - I told her how friendly and helpful and balanced this site is. I know myself I've felt so alone and cut off and I think she's in a worse mental state than me, so I do hope she has a look. Personnaly I find I don't want to socalise much as I feel the spitting and coughing is a problem and perhaps if I'm really thinking about it, I feel safe at home in my little cocoon world and routines just at present.
Night all,
Lynne

I used Pink Magic during and right after treatments, and it definitely helped (sorry, but I don't know the generic name). You mentioned oatmeal in an earlier post. I found that foods that were soft but still not too smooth (like oatmeal) could be more difficult to down at times.

Hi Lynne,
The mouthwash Kevin used says...C-Lidocaine/Diphen/Anta. Not sure what the 2nd and third words stand for. I am getting this off the bottle because I have saved it for sore throats!! It's good stuff!
The term is False Positive, not false negative. It means it shows a positive uptake and there really isn't anything bad, just inflammation. The false negative would mean it didn't show anything but there really was something. DON'T want that for sure.
IF the scan comes back with an uptake they will do more research. Maybe another biopsy, maybe an MRI. They have to follow protocol as if it is bad until they know it is not. On this site we try to go with staying calm until the biopsy is back and they say FOR SURE it's bad. NOT an easy thing to do. As I said, we went through it in March and it was terrifying for a couple days.
We have another next Tuesday. Will try to remain a little calmer this time!! TRY is the key word.
I hope the gal you gave the info to signs on. It is such a lonely place to be. I did not find this site until almost the end of Kevin's tx and by then I was a nut case!! I found so much peace here.
Glad you are with us!!
Kathy

Hi Lynne, I'm just down the road from you in Edinburgh. Welcome to the forum. Like you I didn't find it until I was through the worst but it has been a fantastic help since. I am now 9 months out from a very similar Dx and treatment as you and I was having similar experiences as you at about the same stage. My main problem was sores in my mouth and boney bits from where I had teeth out which made my tongue sore when I moved it against them! Plus lack of appetite, taste and swallowing problems.

Sorry to not have reply sooner but I'm only just back from 3 weeks holiday, driving round Europe and camping. So yes things do improve, but it is at snails pace. I am very proud of myself because I managed to keep my weight static while on holiday (without my juicer and magic bullet blender, which have been my best friends in the kitchen over the last 6 months)though I only managed to do this by additional chocolate (only 70% or more cocoa and melted in the mouth with a hot drink) and beer! Going through Belgium was very helpful as they make fantastic beer and chocolate.

But back to the bad times, which are now fading from my memory, to respond to some of your queries.

I didn't find the morphine particularly helpful, as my pain was as a result of eating. The mouthwash that I found helpful was Diflam (Benzydamine hydrochloride)which I got on prescription. Would gargling that get to the sore areas in your throat? Could thrush be causing your pain? I had severe thrush through my treatment which took ages to clear. It could explain why the pain has got worse.

I had a RIG (similar to a PEG) for 5 months which I found very uncomfortable but it did stop me losing too much weight. I was prescribed Fortisip feeds which I started taking by mouth rather than tube at about 3 months. I still need a couple of bottles a day at present to keep my calorie/protein levels up. They are pretty disgusting but that motivates me to getting off them as soon as possible. The first fluids I managed other than tepid water was an infusion of ginger root and honey. My mainstay food to start with then and still is now is porridge, with a chopped banana cooked in it (I read your post re bananas being a problem but cooking them helps a lot), to which I also add: blueberries, creme fraise, honey, ground flaxseed, ground almond, ground hemp seed. you can make as thick or thin which ever is easier by adding milk. Next I moved onto juicing fruit and veg which I still find much kinder on my mouth than bought juices. Melon gives very kind juice (leave the skin on when you juice it to get the nutrients under the skin) as it stings a lot less than other fruits. Nectarine juice is also good. I usually mix 3 fruits. It is well worth getting a good juicer. Juicing means that I know I have got a good range of vitamins and nutrients as I can't manage salads or cooked veg (though well steamed carrots were good quite early on). Adding milk or yoghurt (probiotic) to the juice can help neutralise the acid. I also use a magic bullet blender to blend avocado and banana and make smoothies.

Once my mouth sores improved I had to deal with the very dry mouth (my consultant always comments on how 'very' dry my mouth is so I quess it is worse than some people). I am learning to live with that. I always carry a small water bottle, the type that runners use, with me and some Biotene gel. This has got easier as water no longer tastes disgusting. Now my main problem is that anything more solid than porridge, soup or yoghurts, like bread, gets stuck just about where the tumour was. In fact today I have just been for a videofluoroscopy swallow test, as David described above. I still have to go back to see the video and get the exercises but the speech therapist can see that the muscles around the tumour site are weak and not squeezing the food down well enough. So at least I know I can do something positive to improve this, and David's post above is very encouraging. I also have worried that I caused the problem by not eating and only swallowing water for quite a few weeks, but throughout my checkups the speech therapists where happy with my swallowing. I am sure that my problem is due to radiation damage to the area around my base of tongue.

I had my 'baseline' CT scan at 3 months. This was thankfully all clear. The protocol at the Edinburgh Cancer Centre seems to be that I will not get another scan unless there are indications of problems and the scan will be the baseline to check against. This makes me a bit nervous as the relief of a clear scan is very reassuring. The reasoning for not having routine scans is that they don't want to add to my radiation overload any further if not necessary. I do get 6 weekly checks with the nasal camera.

I hope some of this might be helpful to you. But my main message is that it does get better so don't get too despondent. Please feel free to send me a PM (personal message) I would be happy to chat on the phone if you wanted to chat. Sally

Thanks for your replies Tim, Kathy and Sally. Great to read an digest all the good advice and information. Yes I realised I'd written false negative when I should have put false + as you say Kathy I certainly don't want that. Good luck with the scan on Tuesday, not sure if it's happened or is next Tue. Sally it's great to get your long detailed post (I'm in Inverness) and well done you, going on holiday to eat and drink your way across Belgium!!
I do have Difflam but it only helped in my mouth and didn't help further down.
I've had thrush twice and my oncologist put me on 2 wk course of treatment after hearing of the pain prior to the visual scope and she stated there was no sign of thrush being the culprit.
Your smoothie of advocado and banana made me shudder (tho I used to love advocado, it now sears my throat) and you know what I think of bananas...not sure if I need them enough to try the cooking but thanks for the idea!
My mono diet of ready brek is ongoing. Yesterday was bad in that water was difficult to get down but today I've managed 2 small bowls of ready brek without too much pain. Hurrah.
When I saw the speech therapist she advised me to do some exercises and also gave me some wooden spatula type things to hold my mouth open to help with the jaw pain I've been developing alongside an inability to open my jaw as far as it used to go. It's called trismus I believe. She will see me again in about a month and said she may offer me a 'terrabite', some sort of stretching device I think. I felt a whole lot better after seeing her as she said that as long as I do swallow water every day I will retain my swallow ok. That's been a huge relief.
Thanks again everyone,
Lynne

I think stick with what you find most comfortable but keep trying things periodically to see if there is any improvement. Eventually it will get better. It just seems to take a long time for the healthy mucosal lining to recover. Especially after thrush.

Not wanting to eat was the aspect of recovery that upset me the most. I was quite worried that I would never want to eat again. I dreaded meal times. It felt quite psychological at the time but was based in physical causes. Friends and family would try to help by suggesting things but nothing was right. I always have a reason why I didn't like it so it felt like I was always making excuses! Eating was a chore that had to be attempted, and I worried that I was too dependent on the gastric tube. Then one day I tried some small pieces of marinaded chicken in a tomato sauce and I suddenly realised I was enjoying it. It was such a relief. Unfortunately I haven't been able to recreate the sauce again to quite the same specification! But since then the improvement has been slow but steady. I've only recently started enjoying avocados.

That's great that your Speech therapist is giving you the right support. I also suffer from some trismus, as do a lot of people here. I was annoyed that I was not warned about this so that I could do some stretching during the period I wasn't eating. Of course I hadn't realised there was a problem until the first time I tried eating banana! And that would have been about the same stage as you are at. I haven't been offered the terrabite (I believe they are on prescription here) but tongue depressors are helping. You need to keep doing the stretching regularly.

I know Inverness well, almost had to move there with my job a few years ago which will give you a big clue to who I work for!
Sally