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Radiotherapy for Throat Cancer

Anchor1707
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Hello all,

I have posted my little story on introduce yourself and basically I have been diagnosed with Stage 1 Throat cancer.

The prognosis is hopeful and I remain cheerful and positive. Its taken a while for the actual treatment to start so glad to get on with it at last.

I started my first day of radiotherpy today and have 29 more treatments to go over 6 week period.
I have made a little computer programme that logs my side effects and summarises episodes of each heading and I plan on keeping a daily log of how things went/ how I feel ( good and bad ) and map out my journey. I find it therapuetic.

I will share periodically in the hope that even if it helps one person as well as myself  it will be worthwhile.

So day 1 was fine and I dont really feel any difference or notice anything.
One small point is that the mask made was slightly harder than when it was first made as it has set little harder over the weeks and was a little more moveable on the day made.
Took about 10 mins for actual radiotherpay treatment itself.
Drove home fine.

Meet with advanced practioner nurse every Thurs to discuss progress.
Aware might be a little different along the way but all good after day 1.

 

kind regards

Ian

 

  • Offline in reply to RadioactiveRaz

    Deliberately not been posting as much but thought I would update with a couple of things as I mirror updates in my blog and as part of the reason why I started this thread.

    At further consultant check up this week following scans and all looking good and no concerns at all.

    I asked the question of whether there would be any more follow up scans say after a year maybe but was told no. They put scope up nose to have a look at throat and have a feel of neck and look in mouth. Was told that check itself would be the first point of anything further cropping up and at an early stage, so all in all quite re assuring.

    Got a wee lecture about diet and was basically told to stop eating any rubbish now and no need for supplements/creams/full fat milk/yoghurt or indeed crisps/curly wurlies.
    Back to a full healthly varied diet to include plenty fresh fruit, veg, fish,chicken etc and foods that give longer lasting energy like porridge oats in morning etc Maybe just a personal thing but I still struggle a little with chicken but told thats quite common.

    Just a word on meds and in particular morphine.

    For those of us who have had to take it  ( among other meds ) and at quite a reasonable dose strenghth the advice is you should not just stop but phase out gently and over a period of time.
    Ive been doing a 3 day rule, which I understand Hazel did as well, but as example 20g (3 days,) then 17.5 (3 days), (15),(12,5),(10),(7,5),(5),(2,5) then off. You get picture and a more controlled and advisory way to let body acclimatise. I use the analogy to divers having to slowly come up from deep waters and little by lille to let body acclimatise. Aware not all had such high dosage nor took any but many of us who go through this treatment do and on medical advice and control.

    For those like myself who work full time we also chatted about work plan. This will obviosuly depend on the nature of your work if you fall in this category but again I can only go by myself. I bascially work in HR/IT environment as senior manager which can be quite mentally challenging and taxing and can be just as tiring as physical work.
    Cut long story short I went back to work too early and had to go off again and recently while I have been on a phased return I could go from feeling great and working quite a few hrs more than normal to then paying price for. Kinda like the meds and advice is to let the body aclimatise and find an equilibrium rather than a peak and trough scenario. Simple example might be on a phased return to work 4 hours and if feeling good, still stop and conserve engergy and if feeling not so good, still try and do the 4 hours to try and get body used to a more balanced approach, then move up the number of hours worked. Wil definately not apply to all here, but for those in similar circumstaces, again some medical advice on the practicalities of re aligning our bodies again.

    What I have taken from it all is that we have been thought such serious treatment and our bodies have to adjust accoringly and doing things by baby steps and gently is probably, on balance, for a lot of people a more controlled way of having body and mind synced back into whatever our "new normal" will be. Sometimees trial and error and not always exact ongoing regular medical advice scheduled after treatment/scans

    And yes lol another disseration on my thread but as I say, I like to mirror my blog which I will be updating and for those who can relate to similar circumstances, I hope its a little help as from professional medical advice.

    Onwards & Upwards

    Ian

  • Offline in reply to Other half

    Thanks other half If it helps just one other person its been worth it, thanks for your reply :)

     

    Dave

  • Offline in reply to Anchor1707

    Ian, thanks for the PM  and for today's update. I am again delighted to read  the info you get confirming the info i got! I too was expecting lots more scans as per what we have read, but my consultant indicated only if they feel its needed ( they are so expensive so it is understandable).

    Also for all others re tapering off meds, i did it by the book and STILL had terrible withdrawal symptoms, Dave........everything helps in this discussion, you too have been invaluable with your input, great to see you moving ahead, at Dave speed!;) 

  • Offline in reply to Anchor1707

    Hi  Ian

    all good and positive news. Onwards n upwards. Yes I am back in Blighty for now !!!

    h xx 

     

  • Offline in reply to TFS

    Graeme, congrats on your scan results & well done!

    Just wondering about the withdrawing off your meds- you said you had a hard time..what meds were you on? My hubby was on everything! GP really helpful with withdrawal & came off no problems.

  • Offline in reply to Other half

    Hi, being based in Spain, maybe different here but they had me on a fentanyl patch, lowest dose, was never in pain so dunno if i even needed it.But they went belt and braces! The gradual withdrawal i did as they advised, but got days on end of twichy legs, anxiety and 5 straight nights punching the pillows with insomnia. Awful. Maybe im just sensitive to it. It is a potent drug. Not nice! glad your man was ok. Thanks. 

  • Offline in reply to TFS

    Hi Graeme back in Blighty and the sun is shining. Full day in the garden !

    ENT Thursday will report back had blood Trent results today all normal with parameters

    h x. 

  • Offline in reply to RadioactiveRaz

    Good to hear Hazel, still warm for you i see! x

  • Offline in reply to TFS

    Hi Graeme nit spanish warmth though now raining so that was summer. Lol

     

    H xx

  • Offline in reply to RadioactiveRaz

     

    Morphine

    Am about to update my blog and thought I would mirror and share a little of my experience.
    Back to the same chant is that we are all different but I'm sure this may ring true for some or even one person.

    Little background in that before diagnosed with tonsil cancer I was on codeine for years due to a bone on my spine they cant operate on, so body is used to opiate medication.I also have had quite a bit of discomport from my gums throughout and have planned dental appoitments coming up to remove some skin that has been aggravating accoring to xrays I had taking along with slow healing sockets from teeth extraction so the pain from that perhaps could have been controlled with something other than morphine as well

    So while on treatment and then recovery ,codeine was stopped and replaced by morphine. First of all by oralmoprh then upped to MST tablets, which are slow release tablets that are taken 12 hours apart to ensure in system 24 hours and can also be topped up by oralmorph.
    At my worst I was on 2 x 20mg and therefore 40mg daily prescribed by my support team.
    A few weeks into recoverey this was reduced to 2 x 10mg tablets and oralmorph when needed.but still 20mg a day and oralmorph that added to the dose temporarily

    So this contnued right through my recovery and in total was prescibed morphine by my GP for approx 9 months. With hindsight, I think this was far too long a period and too easy to keep the medication going. I now believe that morphine has been both my friend and enemy on this journey and has been a contributing factor in delaying my recovery period.
    I tried to stop myself but did too soon by just stopping. That just induced cramps,noticable anxiety,sleep fragmentation,agitation,sweats sometimes among other effects so long story when I explained to my GP he promptly put me back on with no plan or real monitoring.
    Aware that my body was by now used to this level of morphine and eventually I took the bull by the horns as this recovery period was just going to contnue with me being in my bed so much with fatigue and not functioning properly. To sort sleep fragmentation my GP prescribed 14 day course of sleeping tablets which looking back now, was perhaps not the most prudent course of action to add on top of level of morphine prescibed. Once finsihed these I decided that enough was enough.
    So from 20mg, I reduced by 2.5mg every 3 days and after 12 days was down to 10mg total in 24 hr period. At this level I then had few stomach cramps, little anxiety and sleep fragmentation but I stuck with it, determined not to continue as it was.Lasted 2/3 days most then calmed down.
    I then switched to my normal medication that I was on before cancer diagnosis and it's like night and day now and as if a switch was turned on. The effect was pretty immediate apart from one night and I've felt so much better, lucid, out and about a lot more. This has been a massive transformation in just one week since I stopped so cannot be co indidence. I'm back at work baby steps 4 hrs a day and planning to up over a short planned period and, touch wood, I'm sleeping from night till morning now and a lot more normality has crept back in.
    Those who have known me on here know I have had a longer recovery period than most and while I'm now really pleased and far more motivated and lucid, it does actually raise a few questions around this powefull drug.

    Do we need it during treatment and recovery, for some absolutely yes and perhaps at dose prescibed. Do we need it over such a long prolonged period like mine, I would now with hindsight seriously question and certainly in my case, no. I think, depending on circumstances it's a case of getting the balance right of when we actually really medically need it to help us and when reduction and removal and take less powerful medicaion that would be adequate

    I dont really have any major solution and I'm not medically qualified but sharing my experience in the hope that my little chapter on this may help one person assess both the levels of dose and if its being prescibed over such a long prolonged period after recovery, then perhaps it's a converation with GP and or support team, or unfortunately try and sort out yourself.
    If you do find yourself on morphine for any lenght of time then its really important that you just dont stop overnight. Reduce gradually perhaps every 3 days until you feel body is then comfortable to cope with. My GP thought my 12 day period was too quick given length of time but if I'm honest by now I was starting to challenge the medical advice within myself so was determined to carry on now myself and proved it could work and I've been absolutely fine since off last weekend. I will not be convinced otherwise that it's a co indidence.

    So I hope this helps a little but also doesnt not put anyone off from taking during and after treatment depending on their circumstances. I'm just trying to outline that it's perhaps really quite prudent to assess on a more regular basis on the length of time prescribed and whether it would be more benefical to slowly reduce then come off rather than continue with.
    I'm not blaming GP or anyone as I have a responsibilty as well, but we do tend to listen and take the medical advice we are given but there is also a point that a 10 minutes chat/assessment in a GP practice aint gonna always provide the best course of action for you and then you get in the cycle of the next apppt, more meds,nex appt etc.

    It's just an honest assessement and will not apply to that many on here but it's also been a real part of my recovery, right or wrong, and if I could sell hindsight, I would make a fortune.

    I genuinely hope this helps at least one person.

    Onwards & Upwards

    Ian

    note - just updated my blog which by the way has a built in spellchecker and wish we had on here 

    radiotherapythroat.home.blog

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