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Radiotherapy for Throat Cancer

15 Oct 2018 17:21

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

 

Radiotherapy for Throat Cancer

15 Oct 2018 18:08 in response to Anchor1707

Hi Ian 

just dropped by to say good luck with your treatment. The blog is a great idea to get things off your chest and to help others coming behind you. My hubby had chemoradiation- 5 cycles of chemo and 30 fractions of VMAT radiotherapy Feb to March 2016 and has been in remission since July 2016. 

Hope things go smoothly for you.

all the best 

Emma 

Radiotherapy for Throat Cancer

15 Oct 2018 20:55 in response to Newlymarried

Hi Emma,

Thank you for your kind words and good wishes and great news re hubby in remission.

kind regards

ian

Radiotherapy for Throat Cancer

15 Oct 2018 21:01 in response to Anchor1707

Hi Ian

Just to say if you have any questions about what to expect - tips etc on how to get through the 6 weeks then ask away - Id be happy to help. My hubby had primary tonsil cancer with right sided  lymph node mets In his neck.

best wishes

Emma

 

Radiotherapy for Throat Cancer

15 Oct 2018 23:10 in response to Anchor1707

Hi Ian

i am 7 weeks post radiotherapy hang

In there it’s a tough road I did 35 radiotherapy sessions 2 chemotherapy.

i have also done a blog www.radioactiveraz.wordpress.com takes u from diagnosis to present day.newlymarried on here is good if u have any questions just shout out. Mine was HPV 16 + cancer of right  tonsil and lymph nodes 

hazel aka RadioactiveRaz 

good luck 

Radiotherapy for Throat Cancer

19 Oct 2018 16:37 in response to Anchor1707

Hi there,

Many thanks Emma & Hazel for positive comments.

Well my first week is over and touch wood - so far so good.

In a routine now and all my appoitments are 9.00am which I prefer.

I am literally around 8 mins from house to hospital and have a free daily car park ticket and park right outside dept.
Have been taken on time and Wed appt was taken at 8.58 and back in car 9.15!

Very slick operation and staff are brilliant.
Made a large batch of home made tablet for the staff Thursday which they appreciated and seen advanced nurse practioner who advised of potential side effects to come.
I'm sure they will but will deal with them as treatment goes on.

 

So week 1 has been absolutely fine with no real side effects and apart from little more tired, I just have a power napo and fine again.
Will update end week 2 and hope more of the same.

Best wishes to all

kind regards
ian

Radiotherapy for Throat Cancer

26 Oct 2018 16:08 in response to Anchor1707

Hi there,

Well week 2 is now over and again so far so good.

Little more tired and would say started to notice more mucas but that apart I have not really felt any discomfort or noticable side effects.

Aware goinf into week 3 next and potentially when more sied effects will kick in but will have to deal with as and when they arise.
Will post another weekly update next week , good and bad and hope helps someone in similar circumstances.
Happy to answer any questions based on my own personal journey.

Staff in radiotherpay are wonderful and consider it a blessing we have the wonderful NHS.
Not always right but by and large wonderful system and people and when you consider the cost of treatments we do not have to worry about the cost or health insurance etc over and above the diagnosis.

Kind regards to all
ian

Radiotherapy for Throat Cancer

26 Oct 2018 16:28 in response to Anchor1707

Hi...My hubby was also diagnosed with throat cancer in January this year he had stage 4..it was a very brutal time with 15 weeks of chemo and 6 weeks of radiotherapy..by week 4 he started having the neck burns which looked like a nappy rash (he did use the cream for his neck well before radiotherapy started and throughout treatment) the burns continued 2 weeks after treatment finished too which he found were very painful..on the 12th September he got the all clear and went back to work 2 weeks ago..it’s so nice to get back to normality after a very long painful year . I’m also here if you have any questions.

best wishes and good luck

Tina

Radiotherapy for Throat Cancer

2 Nov 2018 10:25 in response to TinaDL

Hi there,

Well end of week 3 now and the initial 2 week honeymoon period with treatment is over as side effects really started to kick in this week from around Wed onwards.
Tongue feels quite swollen and buring at back of mouth and gums sore where teeth removed.
Sore to swallow or even yawn. Can't open mouth fully now/
No redness or skin irritation as yet.

Taste buds have got to pot and its a weird sensation as you eat with your eyes as well.Most foods kinda disgusting and few things I can take that still has a bit of taste and easy to go down.

I take cornflakes when soggy and eating plenty ambrosia rice/home made rice with cream.
Funnily enough Drumsticks squashies swwets are nice and soft and easy to go down as well as still tasting ok. Having to eat as a function now and not really because I look forward to as it tastes weird and little hard to swallow sometimes.
I am drinking 2-3 lires water or ribena each day which I am told helps with the mucas etc.

Also now on oral morphine from yesterday and its particularily sore during night.
Take 2 soluable paracetamol 4 times a day and also have Difflam oral rinse which I find helps as well.

Still trying to stay positive and was told it is a tough treatment but I am getting all the support and help from the wonderful staff.
Just take each day as it comes and can still work from home, so far, during day for a few hours and nap in afternoon.

Although tough, has to be done and I guess no pain no gain applies here and working towards the light at the end of the tunnel.

I did say I would log good and bad but with the appropriate treatment/medication and support, edge on in my journey.
I wish you all well and will post end next week in the hope that it helps at least one person on a similar journey.

Kind regards

Ian

 

 

Radiotherapy for Throat Cancer

2 Nov 2018 20:21 in response to Anchor1707

Hi Ian good luck sorry not replied earlier didn’t see comments ,goodness’s luck and please keep in touch any questi9ns just shout and either me or Emma will help. It’s a long and winding road we are all different

Hazel Blog www.radioactiveraz.wordpress.com

Radiotherapy for Throat Cancer

2 Nov 2018 20:25 in response to Anchor1707

Hi Ian hang in in there I luckily never lost taste buds but works both ways as lots of things I just can’t eat now 9 weeks into recovery and 16 lab lighter just had a piece if hubby 60th birthday cake first in months. 

I am on iramorph still plus 4 times a day co codomol and ibuprofen the pain isn’t pleasant when it comes and nap twice a day do u have a humidifier for bedroom worth it’s weight jn gold be careful with rubena as last thung u want us your remaining teeth to rot my oncologist recxominsds plain irvsoda water but keep brushing teeth n should be fine xx

Radiotherapy for Throat Cancer

2 Nov 2018 21:09 in response to RadioactiveRaz

Hi Hazel

thank you for your response and advice. I was wondering about the ribena myself and will proably stick with water from now on.

For years I have slept with a fan at bedside table and like to have cool in my face and also have fan on during day in my den at home or office. Might be making throat a little drier? but I dont want to give up unless absolutely necessary.
Have already been on co codomol for few years and probably why was given morphine so early in treatment as tolerance level probably taken into account.
I find drinking and difflam mouthwash helps the dryness and was told to keep up with.

I find the pain worse middle of night past 2/3 nights when I waken for loo and prob because meds worn off. Been told today I can up meds a little if needed and will have review on how I get on over the weekend with nurse on Monday. All ,my appointments are 9.00am and first one in so I'm grateful for that as well.

That said, Im still positive and working at home just now, utube,ipad,reading and happy enough with my gadgets.
Just something have to go through but remain focussed on longer term benefits.

I'll post again next week after I see another week into journey. Not sure how much longer I'll be able to work from home but will play it by ear.

Again thank you for your messages.

Have a great weekend


Kind regards
ian

Radiotherapy for Throat Cancer

2 Nov 2018 22:21 in response to Anchor1707

Hi Ian

yes the fan could be drying you out ,I got a humidfrom Amazon abiutb£25:money well spent as a possibility later in us sry mouth setting in and then that wakes u still does for me so it’s up and rinse with warm water ps I can onky use mineral water tap water is now like chalk oh themjoy of tonsi cancer ! In the warm as u can stand ut water use table salt but unhabe to be gentle with it don’t gulomhenrky sip rinse spit nit pleasant but necessary.

i was told at one point if pain was too bad upmthe ora 10 mil every 2 hours !!!! Luckily I onky needed that for a day or so now 7.4 mil every 6 hours. We are in Spain at the min we rent an apartment oncologist gave me permission to come for 3 weeks it’s not been easy as food wise I am in energy shakes ,limited food by mouth .but everyone’s is different I had 3 Ed degrees radiation burn in neck de said it was inevitable for me along with I still have a radiation burn one side if tongue again the margins thatbse has ro be done in my case to eradicateall the the cancer. I always has 9 am appointment but took us 90 mins to get there due to traffic so lucky u being near.

keep in touch shout if need anythjng

hazel 

Radiotherapy for Throat Cancer

7 Nov 2018 16:52 in response to RadioactiveRaz

Hi Hazel,

Just quick thanks as I seen your advice to someone else re toothbrush and I got a pack of 3 CURAPROX ultra soft bristle for teeth. Was so sensitive when brushing and using these plus sensodine toothpaste makes it a little more easier and comforting to use.
Also bought 2 humdifiers from Amazon and one for my den and another larger one for bedroom.

Makes a cool mist and also put in essential oils as well  - i have eucalptus/tea tree for den and lavender for bedroom during night

anything to help is great and little tips can sometimes go a long way to help discomfort so many thanks

Ian

Radiotherapy for Throat Cancer

7 Nov 2018 20:21 in response to Anchor1707

Hi Ian you are welcome I find the toothbrushes and humidifier are bith gif  sends they make such a difference,

i also find a magnifying mirror attached to bathroom mirror invaluable as well along with the finest interdental brushes as time goesonnyiur tongue won’t be able to clear   if food out if your mouth but gently use those and at least we can hopemtomkeep,our teeth !.

Keep lots  if tissues around and u may find drinking difficult for a while I was green tea water plain is still such a big no no it’s oike chalk. I am a expert in soda water m tesco oiver schweeps as their  bubbles are too harsh .! Sad I know . It’s a hard journey bt every little helps if u need anything just shout . Am 10 weeks post radiotherapy and still in my ibuprofen co codomol n started to reduce the ira morph 

where un U.K. are you ? I was treated in Leeds 

if u want to send a friend request you can private chat 

hazel

Radiotherapy for Throat Cancer

9 Nov 2018 12:25 in response to RadioactiveRaz

Hi there,

so end of week 4 into my 6 week treatment plan and progressing along.

On morphine/paracetamol to help manage pain and am still drinking at 3/4 litres water a day which I find helps.
Difflam mouthwash helps and find refreshes mouth as does caphosol mouth wash i was given in addition.

At the moment mostly all under control but am struggling a little with eating. Don't have much appetitte but have to force myself to eat as a function rather than enjoy. Taste buds all to pot at back of tongue and most things tates metallic. Am on drink supplements which I can manage to keep caloroies and weight up and I can manage chicken soup/ambrosia rice not to bad.
Lots mucas during night and up every couple of hours to clear and to go to loo, but also have a drink before falling back to sleep. I do think drinking as much as possible helps and have been encouraged to drink as much as possible by nurses/radiotherapy staff
Nice tip from Hazel on here to get soft CURAPROX toothbrushes from Amazon and more gentle to clean teeth with so thanks again to Hazel.
2 humidifiers I bough I use day and night and put eucalyptus oil in and feel helps as well.
Still have a small nap in afternoon as tired and takes edge off but also still managing to work away at home and keeps brain active.

Side effects pretty much what I was told to expect at this stage and staying positive and monday sees me goinf into my 5th week and 10 treatments to go. Will deal with anything additional as it comes along and seeing dietician and speech therpapist Monday after my treatment for a catchup.

Have a fabulous team at my hospital in Dundee and cannot praise them enough for care/support and advice. The whole support infrastructre has been magnificent and inspires confidence when I have them behind me.

Will post again end next week but happy to help anyone I can with any questions or tips on what i have being doing. Little tips can sometimes help a lot, like the toothbruch may seem minor, but that little tip from Hazel is a blessing for me as now no real discomfort with teeth cleaning.

I wish you all well.

kind regards

Ian

Radiotherapy for Throat Cancer

9 Nov 2018 20:21 in response to Anchor1707

Hi Ian

i has 35 treatments so 5 more than you.have yiu asked the hospital for a nebuliser they loan them out and I found around this period it helped immensely to clear the mucus. Water is deffo good drink it while you can I woke one day n it was like chalk so now it’s soda water n occasionally peppermint tea for me. Hope you don’t need a feeding tube but if yiu do take it from me it’s not the end of the world it saved me around the 4/5 week period all I could eat were poached eggs n woe betide if their white wasn’t cooked right !

i had ut in a total of 45/days nit the most pleasant experience but life saving ,I appreciate your comments thank you we are all here to help in anyway we can .i am 10weeks post radiotherapy still in the high calorie shakes but unfortunately I got part of my tongue radiated as the margins the dr wanted included catching my tongue so still on ora morph n co codomol.but every day am eating a bit more just having a slice of Swiss roll smothered in ice cream  calories   calories  Ian my new motto. Strange shopping now always watched what I ate now it’s full fat everything !

good luck for this week . Ray and get the mask magnifying mirror and watch out for oral thrush it’s difficuktbromexplain but I’d u get the pain levels shoot up and need nystatin or flucazinole ASAP .the mirror helps coz  thrush it mimics mucosa as well but if you scrape it u may get blood underneath. Throat cancer just keeps on giving but together we can beat it

ps I worked in Dundee’s I we 40 years ago in defied if a travel agency that’s long since gone ,think Honeywell’s were one of the business accounts that Dundee delay with ! 

Ps have u lost the urge to read yet ? I did it lasted for 3 months and I am an avid reader and waffle on a but 

take care

hazel 

Radiotherapy for Throat Cancer

10 Nov 2018 14:17 in response to RadioactiveRaz

Hi Hazel

and thank you for responsing to my posts as its encouranging to get at least one reponse.

Dont even want to think about tube unless really necesary and doing all I acn to avoid for obvious reasons.

I'll talk to nurse about nebuliser as the humidifier helps and might be something else to help along journey.

Nice you are enjoying yourself with cake / ice creams and calories lol....everthing told to avoid is now encouraged to eat. My mask still a good fit so hoping to continue that way and slowely start to find more things I can eat and will, like yourself, get through this in the end.

Nice to see you are positive. What was the situation re holidays in sun? We cancelled 2 holidays this year and one next Sept to tenerife and been told to wait at last a year before going abroad and hot sun?

Funnily enough, I have read every night as far back as might schooldays and love to read, but find just too tired to read in bed now.My appointment is 9.00am each monrning but get to dept about 8.15 and read on my ipad for around 40 mins so enjoy that.

Your fine with waffle lol and nice to be able to touch base on hear and at least with someone who has been through same kind of treatment and side effects.
I think on the whole Im coping ok so far and long may continue. Apart from eating a little struggle my energy levels quick low and although mentally ok, physically im not really up for much and have a power nap each day, sometimes 2 in addition to good nights sleep.

Enjoy your calorie intake and sounds great !

kind regards

Ian

Radiotherapy for Throat Cancer

10 Nov 2018 16:37 in response to Anchor1707

IHi Ian

youbare welcome we have such a rare cancer that replies aren’t as often as sat breast or prostrate but we are a tight little team lol.

re h9,idays 10 weeks post radiotherapy and am writing to un from our long term meeting this entails rental apartment in Los Alcázares on the mar menor near Murcia .my oncologist gave us permission as I would have full access to cooking and cleaning facilities to be honest wouldn’t want to Be un a hotel with all the problems  so maybe think about an apartment as it is easier  cause. Remember our immune systems are down so mixing with others isn’t good. I am wearing factor 50 on my neck and factor 20 Elisewhere although it’s about 22 degrees my body thermometer is out of kilter and am wearing long sleeves whilst hubby in shorts n sleeveless! Re insurance we have a yearly policy and at the min they are keeping me covered for everything apart from tonsil cancer n side effects which is fine as I dint expect getting ut again and if I felt ill it’s easy enough to Jump on a plane and in U.K. in 2 hours. We did obtain quotes to cover for tonsil cancer n was quoted £2500 for yearly so at min relying on EHIC card which brexit will still be honoured up to 2020 providing we don’t just up n leave we need a settlement or else we are all f d on the EHIC card although Spain are fighting for us to have health cover as tourism is its life blood.

off for nap as just biked 20 km nit huge but it’s a start if you’ve read my blog I will know I cycle. 

Top tip if you get Ulcers ask for gelclair to be prescribed it’s nit nicebut ut helps. My oncologist doesn’t do any mouthwashes so for me it’s warm salt water thats all I’ve used ve has. Luckily not lost taste  buds but saliva now weak  at so night then so when I wake today I wanted to yawn !!! Oh no big O NO just stifle the yawn 

reading will come back mine has thus week

bit about me 61 married to John 40 years next June in every daughter Nicola in every grandson James 7 3 step grandkids 23 22 21. How about you

plus my cancer is h p v 16 + is yours or don’t u know if nit ask 

 

waffle over any questions just ask good luck for next week 

 

hazel 

Radiotherapy for Throat Cancer

10 Nov 2018 17:06 in response to Anchor1707

Hi Ian

Youve joined our little group of tonsil cancer friends and as Hazel says its a select group. It sounds like you’re doing ok at the moment as you move into week 5 and I would definitely ask about the nebuliser as it really helped my hubby as he got further along.My hubby had 5 cycles of Cistplatin and 30 fractions of VMAT radiotherapy over 6 weeks and we found the 3 weeks after the treatment had finished the worst time as he couldn’t swallow anything and had terrible sickness. 

However he has now been in remission for 2.5 years with no sign of a recurrence and although he still has some side effects- he unfortunately ended up having a neck dissection as the tumour in his lymph nodes wasnt cleared by the chemoradiation- we are back to our usual outgoing lives so the side effects or survivorship as our oncologist calls it is a small price to pay.

Sending best wishes and luck as you go through the treatment and feel free to ask any questions you might have.

Emma xx

 

Radiotherapy for Throat Cancer

10 Nov 2018 18:39 in response to Anchor1707

Hi Ian

my husband has larynx cancer an just finished 6 weeks radiotherapy on fri it’s been long six weeks an he has done really well as when he first started they told us the downs I wrote him off week two but he still got his voice just about an kept his weight keep on top of your pain his neck is really sore now and got sore throat but they said next two weeks will be tough good luck with your treatment

 

mansy steve

Radiotherapy for Throat Cancer

10 Nov 2018 20:25 in response to Mandy0810

hi mandy just git to hang on to things willgetbbetter I am 10 weeks post radio,eatingbstill difficukybthank god for high calories drinks but little by little am eating and regaining strength 

I have written a blog if yiu want to read the ups  and down s feel free to ask any questions between us we all help each other

www.radioactiveraz.wordpress.com

 

hazel 

 

Radiotherapy for Throat Cancer

10 Nov 2018 23:50 in response to RadioactiveRaz

Thanks to all responses as it is encouraging and therapuetic to be able to share and have others understand this type of journey.

On a positive note I will take the side effects over getiing ride of the cancer and small price to pay.

I had the added bonus of being misdiagnosed earlier this year and said it was just flux and acid from stomach causing sore throat and red right tonsil. Was given Landoprasol and had a major reaction to this medication which gace me 4 weeks chronic diahoreaha then was admitted to hospital for a week with intravenous steriods. Only 2nd day before i left did they look at medication been on and stopped this as they thought root cause!! This made me miss my ENT appt and had to wait further appt.
Had colonoscopy and biopsy for bowels which came back clear for cancer but diagnosed microscopic colitis which was then managed by 3 mths steroids, which touch wood is now under control and has been for months.

Was only at my next ENT appt told they thought it might be cancer and that I was being fast tracked and operated on asap. Tonsil out and ouch! that was not clever and side effects from that gave quite a bit of discomfort. Had to wait on that healing then in for surgery to get back teeth out and again another nice little appetiser before radiotherpay treatment.

Again, overall I have been positive about the whole thing and encouraged that consultant looking to cure this although I get it that life will probably never be total same and some adjustments having to be made.

Im fine with that and just deal with what i have to deal with.

So couple questions in general as I know all different, but when would I expect to maybe see enegry levels start to increase and maybe some gentle exercise on bike at healthclub.
Taste buds will have to wait and see how goes and just adjust to what I find acceptable to eat.
I have vowed never to drink alcohol again and been 149 days since I last had a vodka and coke. The very thought made me shudder.
I have put on some weight this year and although now not the time, want to get some weight off and assume this would be more controlled. So what is the take on weight and calories long term? Assume your not encouraged to intake massive calories/ice cream long term?

I lead quiet life and bit of a homebird apart from my holidays and am very contented person.

Still only 60 next March, not ready to retire yet but think I am going to aim for retiral at 67, god willing.

I know insurance can now be an issue and although there are specialist companies, i'm not sure id want to travel back to Tenerife which is a little further away if anything goes wrong and I do have concerns about the intense heat and will probably look at closer alternatives further down line when more able.
Was told you should really wait at least a year after radiotherpay before venturing abroad again, but does not seem to be the case with all?

Sorry if waffling and not all joined up, but as say, sometimes therapeutic to just chat/type away to others who understand and its nice to offer each other support and advice etc.

Enjoy the rest of your weekend and I will stop being a keyboard warrior lol

kind regards
ian

 

Radiotherapy for Throat Cancer

11 Nov 2018 08:53 in response to Anchor1707

Hu Ian 

simikar afe to me 62 in Feb I retired 8 years ago n hubby ex miner 2 years ago. Re insurance try n get some one who will exclude the dance let’s fsce it we aren’t going to get it again ! Like oncologist says CURE so am taking comfort from that I put nearly a stone in in the weeks waiting for treatemdnt so now lost 2 stone the dietician s views are balanced calories which I adhere to with fresubin n ensure drinks but my view is any calorie I can get down us good. Re exercise I was 8/weeks post radiotherapy when I first got on rollers on bike the achievements of 2 km was unbelievable but take it steady our bodies have been through a tough time. In kastvweek I’ve dine 52 km ok in Spain n 50 km gently walking. 

Inhavent deunk for 9 years can’t do with hangover ,and haven’t smoked for 15 years thunjnwe are just the unfortunate ones. I spent most if summer moan)by jn about the chavs who do both but life too shirt to moan 

3 days left jn Spain so getting bikes out for a gentle ride ni Tour de France hills for me for a whike

happy sunday

Radiotherapy for Throat Cancer

11 Nov 2018 13:32 in response to RadioactiveRaz

Thank you my hubby finished rt on fri been in bed for last two days not feeling too good they did tell us it will still burn for two wks so plenty of rest n sleep

mandy steve

Radiotherapy for Throat Cancer

11 Nov 2018 19:50 in response to Mandy0810

Hi Mansy n Steve

good luck in finishin r t  t it’s a big hurdle ,yes at least the next 2 weeks are hard in my case it was a bit longer. Main thing don’t let him bhim sleep too long as his liquid intake is critical plus food intake. You may find eating gets harder and weight losses get bigger I maintained weight  well lost women throughout r t but in last tb10;weeks have lost over a stone .

just in every thing on Monday when Yiu don’t have hospital ion a daily basis it’s a relief but you’ve also lost a vital,point of contact that we’ve all had for weeks we are basically in our own I have a good Macmillan team if u do please use it 

 

I have  written a blog don’t know if you’ve read it 

www.radioactiveraz.wordpress.com

 

anybquestions or fears just ask, ps u might find u argue we did n it’s nit usual at all for us but it’s frustration u want him to eat he won’t be able  to or want to unwill get there ough it suggest u have a good friend u can lean on 

Hazel 

Radiotherapy for Throat Cancer

12 Nov 2018 12:28 in response to Mandy0810

Hi Mandy

This we found is the toughest time. No more daily hospital visits with the support that offers and the cumulative effects if the treatment which build and definitely get worse before better. My hubby tried to do too much and ended up in hospital fir 4 days so rest and sleep is the way to go.My advice is batten diwnnthe hatches and ride the storm youre on the home straightand recovery will come - slowly but it will come.

best wishes and good luck

Emma

 

Radiotherapy for Throat Cancer

12 Nov 2018 12:30 in response to Anchor1707

Hi Ian

just checking in on you to see how your getting on. 

Good luck and best wishes

Emma

Radiotherapy for Throat Cancer

12 Nov 2018 14:41 in response to Newlymarried

Thanks Emma best thing is sleep as he done really well he feels better today had something to eat n looks better colour 

mandy steve 

Radiotherapy for Throat Cancer

12 Nov 2018 15:02 in response to Newlymarried

Hi Emma

thank you for asking and touch wood, still doing ok ish and being managed via meds etc.

This is the start of my fifth week and met with nurse/speech tharapist and dietician at meeting after treatment this morning. they seem pleased enough with me and I am still manageing to drink around 4/5 litres water a day which they say is a big help.
I am also on Ensure drinks that i find ok as struggling a little with eating as most food taste metalic.
Am ok with liquids such as chicken soup/ambrosia rice/full fat strawberry yoghurt and milkshakes to keep the calories on.

Have had morphine increased and apart from oramorph, take MST sachets twice to have in system all time and they have upped dose on that.
Up during night about every hour to clear mucas/go to loo but lucky enough to fall quickly back to sleep.
Bit more tired during day and need at least one power nap ( around an hour or so) and throat bit sore in morning when I first rise but gets better as day goes on with liquid intake and morphine.

 

Again, thank you for asking and only 9 more treatments to go! but am being looked after by a magnificant team of staff.

kind regards

ian

Radiotherapy for Throat Cancer

16 Nov 2018 10:31 in response to Anchor1707

Hi all,

Just finished week 5 treatment this morning and one more week to go.

They have upped the morphine and am now on Fluconazole for oral thrush they found yesterday.

Feel like a chemist here with all these meds/mouthwashes but its all fine and would say genrally still ok and not experiencing anything I was not expecting.

Little more tired and quite bit mucus comes up during night, but get back to sleep quite easily.
Not been on solids all week as they taste gross and metallic and have been sticking to liquid/soft meals.
On Ensure drinks that they gave me and was told equivalent of a small meal plus I can eat chicken soup/ambrosia rice/custard and full fat yoghurt which I enjoy.
Got weighed yesterday and surprisingly had put on a little weight, which they were please with as was I.

All in all not really complaining and on the home stratight for treatments next week with only  5 more to go, although I know the side effects will continue, at least no more daily treatments.

Was also given a nebuliser yesterday and have used a few times, but not really sure if making any difference. Does anyone know if I can put a couple drops eucalyptus in with the saline as love the smell and alwasys thinks helps clear head.

Thank you to all that reply as its helpful to share my experience as not only do I find it therpeutic, i really do hope that it can help at last one person. Treatment/side effects etc are not brilliant but you get through it and am still trying to stay positive.

kind regards

ian

Radiotherapy for Throat Cancer

16 Nov 2018 20:36 in response to Anchor1707

NHi Ian congratulations on week 5 I had 7 weeks radiotherapy n 2 sessions of chemotherapy.i burn eucalyptus oil in an oil burner my MacMillan nurse advised ninto putting in nebuliser for fear of it burning the throat ,suppose up to  you but wouldn’t put too much in. 

Weight wise I started loosing after radiotherapy but everyone is different just keep doing what you are doing. I am sat here dipping a walkers shortbread into a latte if yiu would have told me that 2 weeks ago I wouldn’t believe yiu things change daily. For tea u managed mash with lashings of lurpack a smallmyorkshire pudding cabbbage and stew gravy but meat is a hit and miss .for lunch 1/2 a steak pie with soup as gravy went down .

tablet wise still on ibuprofen for swelling cocodomol 2 tabs and have reduced ora morph to 2.5 ml from 5 daily  .

good luck for next week ,ps started reading at night time this week plus been shopping baby steps  just taking a day at a time ,some people get little side effects some like me get longer side effects  git my scan late December with results early January aren’t worrying about them as can’t  worry about something I can’t influence  

just a word be careful of people who have had flu jab or git cold as live  vaccines exposure isn’t good for us  at the min

enjoy weekend 

hazel

 

 

Radiotherapy for Throat Cancer

16 Nov 2018 21:12 in response to RadioactiveRaz

Thank you Hazel and like the sound of how well you are progressing with baby steps and on the right road.

My den looks like a chemists and on so many meds for different things but not too bad. Would say just bit washed out just now.
I agree re cold/flu and one of the things I have little concern over as would really struggle with mask and flu!

I know still quite a journey ahead but will be glad when the treatment stops next Friday and then take it from there.
I am trying hard to keep weight on during treatment and forcing down liquids as muc has I can .Struggle with any solids as tastes so awful.

At least reading your steps does give me hope for my first tasty fish and chips or chicken korma and rice..mmmmmmm

Think your right and will just keep to saline in the nebuliser

kind regards

ian

Radiotherapy for Throat Cancer

16 Nov 2018 21:53 in response to Anchor1707

Hi Ian 

at some point you will feel dried out with saline tip u can use just plain water still effective but doesn’t dry your mouth .

luckily my taste buds never went but that works against u as well if h can taste everything sometimes u just can’t eat it. Met a guy 3 weeks behind me and he was eating everything fish j chips curry’s chillies he was lucky didn’t get muscosis although lidtvradrlodt taste d buds good luck with flucozole I ended uo  with nystatin as flucozle didn’t clear the oral thrush. Tonsil cancer I call it the cancer that just keeps giving us problems. People can’t understand  why we can’t eat get comments my friend had breast or / bowl cancer and  could eat!! Umm mouth radiation stops u eating not all cancers are the same !!

one tipfor trying to get food down is pretend u are a chicken and throw you head forward like u are pecking not a pretty sight but can work !!!

night night hazel ps am also a branch of boots the chemist !

Radiotherapy for Throat Cancer

16 Nov 2018 21:54 in response to Anchor1707

Hello there.Just came across this site this week whilst trying to find out about squamous cell carcinoma of tonsil after being diagnosed with it in June this year.I intentionally avoided googling anything whatsoever to do with cancer and indeed was warned not to by oncology staff.Glad I did as it left my vision clearer and helped me focus on my recovery.Anyhow,today is the 12 week anniversary post treatment and after reading a thread started by gamma ray Gary (vatch) it struck me that  everyone has had chemotherapy.I opted for an alternative called Cetuximab,one of the so called targeted therapies.I just wondered if anyone else had been offered this course too.

 

John.

Radiotherapy for Throat Cancer

16 Nov 2018 21:58 in response to Johny7

Hi john I am also 12 week post radiotherapy todsy I gad cisplatin. How are u feeling are u eating yet ? I am just starting hsve read vatch v goofd I also have a blog l

 

www. Radioactiveraz.wordpress.com last blig is first do scroll down if u want to read from beginning  

hazel

Radiotherapy for Throat Cancer

16 Nov 2018 22:11 in response to RadioactiveRaz

Hi Hazel,yes I'm eating in a fashion.As you probably know,it's 2 steps forward and 1 back at this stage,slowly slowly catchee monkey! Some days you can eat with relative ease and the next it doesn't feel too good.I had the peg fitted before any treatment and I still have it thank good as I didn't eat for weeks.I was back at Weston Park hospital last week after 4 really good days followed by 2 worse and 1 much worse only to find the dreaded thrush is back (3rd time),so another fortnight of flucanazone.I put it down to loading up on all the sugary **** like biscuits and deserts I've had to try and gain weight back.

John.

Radiotherapy for Throat Cancer

17 Nov 2018 21:34 in response to Johny7

Hi 

western park Sheffield ? Ok was st james Leeds live half way between the 2 of them so 90 min journey when rush hour. 

Yes I am also on my 3 rd round if oral thrush if fact nystatin is in my repeat script !!

lol

yes suppose it’s the sugary stuff this week I discovered I can eat chocolate !!!!!!!!!! So 2 hero’s equals 98 calories! Nevertheless thought I would be counting calories to eat instead of diet. 

Do u have a scan date yet ? Mine hopefully between Xmas n news years  will find out on the 26 th 

keep trying to eat I am finding meat pies are edible as long a slice j dip the pastry in soup !!!! Weird but fresh meat is a big no no answer I miss fruit so much 

take care

hazel

Radiotherapy for Throat Cancer

17 Nov 2018 21:38 in response to RadioactiveRaz

No peg for me not given at Leeds ended up With feeding  tubes for 45 days lost 18lb in weight bulkedmup when diagnosed put nearly a half a stone  in was eating magnums morn8ng noon n night as u knew the weight would come off .

 

Radiotherapy for Throat Cancer

18 Nov 2018 09:33 in response to RadioactiveRaz

I lost 30lbs or 14kgs if you like.Have a hospital follow up on 20th December but they said scan will be before that.

Radiotherapy for Throat Cancer

18 Nov 2018 14:34 in response to Johny7

Hi Johnny

good luck for the 20th keep me posted. Strange how each hospital consultant does it differently guy who I went through treatment with has his scan next week but my consultant waits 4 months as long as results are what we all hope for fingers x. 30 lb ****** bet you’ve had to buy a new wardrobe of clothes !i am not too bad as am just under 10 stone n still get in my clothes MST have been a snug fit some if them prior to cancer visiting  me !,,,lol

 

kerp in touch just had half a pork pie warmed n dipped.  Soup strange how some things are easier to eat but last night chicken was a big no no even with gravy. 

Plus I am dunking biscuits in coffee which I have never ever done but needs must xx

 

take care

hazel 

Radiotherapy for Throat Cancer

18 Nov 2018 14:47 in response to RadioactiveRaz

Hi,Hazel I've found a nice small fish fillet done in foil to keep it moist and some tinned mushy peas goes down easy.Tried Smash and liver with onion gravy the other day and I managed half the liver but I braised it too long leaving it dry,still it went down which felt like an achievement! Seems to take forever to finish a tiny portion.Going to try some prawn pasta later.

 

Radiotherapy for Throat Cancer

18 Nov 2018 14:53 in response to RadioactiveRaz

Im try to keep the calories on as much as possible so it doesnt effect the mask having to get re made/ineruption of treatment etc and have found various things to do that without solids so far.

have home made soup that i blizt and puree and also blend a chicken breast though it as well to try and get some protein and  goodness in as well.
I have been given ensure drinks to take twice a day and also take full fat yoghurt and pots of fresh custard/ creamed rice/milkshakes.
tatstebuds not great but I manage the above ok.

I have my final week of radioatherapy starting tomorrow and wonder what that advice is regarding diet etc after the treatment stops?

Im just trying to get through this week re calories etc but does it matter so much after treatment as long as body has daily intake of something as well as plenty fluids

regards
ian

Radiotherapy for Throat Cancer

18 Nov 2018 15:53 in response to Anchor1707

Hi Ian 

you will be fine this week they use the mask won’t fit as an way of keeping you eating . My radiotherapy team said in last week I had lost 1 mum off my shoulder so I ssud what do U want me to do I could eat like a horse tonight no guarantee that it would go on my shoulder. ! They said fair comments we have to bully h to eat but they have ways of adjusting the masks if need be. 

I found the first few weeks after treatment was when my mouth was at its worst and didn’t get any solid food down at all . Although we look forward to treatment finishing its scsrybti loose the daily contact that we’ve had for weeks just keep going what you are doing experiment every day. Today plain mineral water has come back to me after 9 weeks if it bring like chalk! And only drinking soda water n occasionally peppermint tea. 

Good luck for next week remember make sure you have a decent supply of tablets as u found my drs pretty useless and left me 6 days without painkillers luckily I had a secret stash ! But they didn’t care I’ve unfortunately got a complaint in against the drs as they also ignored a request from hospital for  56 bottles of endure ie 2 a day fir s month changed it to 12 random ones doh!!!! Stress levels went through the roof.

sntest I’ve got good Macmillan nurse n dietician 

once sgsin good luck

hszel

Radiotherapy for Throat Cancer

18 Nov 2018 16:00 in response to Johny7

Hi Johnny 

mushy pea s I reslky can’t eat finding fish seems to stick although trying salmon tonight. Today plain mineral water has become drinkable who knows whether tomorrow will be the same! 

Akthough pork pie at lunch time was delightful cheesecin tiastbgir breakfast as well   Darent hsve orawns had some while having chemotherapy n made me do I’ll darrntvtry them not having much luck with pasta finding it sticks n anything with tomatoes is a no no too acidic . Keep in touch with tips we will get there in the end just didn’t think recovery would last this  long. 

Are u working I retired at 53 luckily n hubby worked underground and finished at 58 so we have personal pensions n he has his pit pension so we get by. I drive fir first time yesterday since treatment started frktvdo goof

take care

jsxrl 

Radiotherapy for Throat Cancer

18 Nov 2018 17:42 in response to RadioactiveRaz

thanks Hazel,

tbh I was concerned as well re medication after treatment stops end this week but to be fait my GP really good.

I phoned hime Friday re this and he re assured me I wont be left without and not to worry about quantitles etc and would make sure ok. He admitted communication between hospital good be better and they are not really updated timeously all the time, but he took a note of all my meds so not a surprise when I put through as repeat prescrption.

I'll post end week how I get on but thank you for words of encouragement.

kind regards

Ian
 

 

Radiotherapy for Throat Cancer

19 Nov 2018 12:52 in response to RadioactiveRaz

Hi Hazel,still in employment but not worked since treatment started on 2 July.Will be working til 67 I'm afraid due to naff pensions.Also have expensive hobby so not working is not an option,besides I like my job and I'd get bored,I  need the routine.Dont expect to be back at work til after Xmas really.Company have been good to me though so not had the worries that some folks have.Tried gluten free brown bread yesterday with some soup and it went down well.

John.

Radiotherapy for Throat Cancer

19 Nov 2018 14:43 in response to Johny7

Hi Johnny 

i will be 66 when u get them oittance if state pension so in meantime spending daughters inheritence !!!!LOL Onkyngot the one daughter and she will certainly spend anything we’ve left. 

I worked in travel for 35 years so travel was our big expensive now we have a long term rental on an apartment in Murcia 5 mins dorm sea and try n spend about 16 weeks a year there other than that live quite cheaply although after this experience it’s a case if unwant simething ****** ut buy it it was certainly a wake up call.

your hobby motorbikes by any chance !!!

we cycle that’s been our main hobby niw just returne dfor 19 days At apartment but  oncologist gave me permission to go and I actually managed to bike 100 km it was so brilliantly just having the freedom .

strangely bread as long as toasted I can eat spread with lurpack but will look for gluten free n give it a try 

The salmon fillet was perfect 3 mins a side in frying pan then popped in hot  oven for 3 more and I ate it all how was pasta and prawns.

hope the weather isn’t getting u down I was just pleased treatment was  in the summer .

pleased your work has been understanding like yiu say nit all of them are 

keep in touch 

hazel

 

 

Radiotherapy for Throat Cancer

19 Nov 2018 15:00 in response to Johny7

Hi John 

My hubby definitely found gluten free was the way to go to be able to manage bread, biscuits etc - bit of an acquired taste but he soon got used to it. 2 1/2 years later he can manage most things now even a crusty baguette! with loads of Evian water( his water of choice ) to help !! 

He worked from home all through his treatment- 5 cycles of chemo- 30 fractions if VMAT radiotherapy and a neck dissection as he has his own business that is computer based so he could  even work whilst hospitalised with sepsis and extreme vomiting - though I wouldn’t recommend it ! 

Keep up with the eating - trial and error we found as everthing tasted different from before.

good luck

Emma 

 

 

Radiotherapy for Throat Cancer

19 Nov 2018 15:39 in response to RadioactiveRaz

Hi,Hazel,yes I'm motorbike mad,have been since 17 and I'm 60 soon.Not been on the road bikes since about week 4 of radiotherapy and not been track riding at all this year with this thing.And yes I found toast and lurpak an easier option than dry bread,with copious amounts of tea!!!  Funilly enough I've not tried gluten bread toasted although I might soon as I miss beans on toast an awful lot. I do have about 8 different pensions but they won't pay anything like my current earnings so I'll stick at it so I can enjoy life to the full.Hope you get to enjoy lots more time out in Spain.We're Greece fanatics and usually go twice a year but only once this year thanks to this thing!!!