lost voice : hi..I lost my voice... - Oesophageal & Gas...

Oesophageal & Gastric Cancer

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lost voice

telford-hiker profile image
65 Replies

hi..I lost my voice 2 weeks ago,I did manage to get a doctors appointment last week (shock 😳) and seemed to think it’s a viral infection,and to come back if it hasn’t returned..which it hasn’t ..only putting off has I have my last 6 month check up with the surgeon Tuesday..it’s just over 2 years post Ivor Lewis ..I have had a few chest pains but think this maybe anxiety,thinking the worst…just wondering if any else has had similar thing related to the condition…

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telford-hiker profile image
telford-hiker
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65 Replies
Brett77 profile image
Brett77

Could be laryngitis which could be viral or bacterial for which you might need antibiotics.

You should get an ENT to visualise the vocal cords and see if they’re moving ok. Could be a palsy for lots of different reasons.

My best wishes.

telford-hiker profile image
telford-hiker in reply toBrett77

I’ve had a call back this morning from doctors..when I said I’m seeing surgeon tomorrow..he said well it’s down to him ..typical reply these days

Deeedals profile image
Deeedals

Hi, just to let you know I’ll be thinking of you tomorrow. Let us know the outcome and try not to worry to much in the meantime. At least you’re seeing the surgeon who is the best person to allay your fears or fix the problem. Xx

telford-hiker profile image
telford-hiker in reply toDeeedals

Thank you 🙏🏻

telford-hiker profile image
telford-hiker in reply toDeeedals

CT scan booked for Tuesday 🤞🏻

Deeedals profile image
Deeedals in reply totelford-hiker

Great stuff, hopefully it’s nothing to worry about and it will put your mind at ease. I’ll be thinking of you xx

Cavalier3 profile image
Cavalier3

I’m sure it’s nothing to worry about but we all understand how you’re feeling. Strangely I’ve had tonsillitis twice in the last few months! Im 16 months post surgery. I haven’t had a sore throat for 30 years! I put it down to be run down more than normal. Every tiny ache and pain has us worried though. I hope that gets better in time. Thinking of you tomorrow. Your surgeon is the best person to talk to. Let us know how you go xxx Sue

telford-hiker profile image
telford-hiker in reply toCavalier3

Thanks for reply,I do feel well ..been out walking today been doin a lot of mileage in the hills so maybe bit worn out..hope my surgeon is re assuring tomorrow..thank you 🙏🏻

Cavalier3 profile image
Cavalier3

I walk a lot too but I do get tired more than I used too.. usually the day after I feel drained sometimes. You will feel much better after you speak to your surgeon. Xx

telford-hiker profile image
telford-hiker in reply toCavalier3

Yes your right ..and thank you

telford-hiker profile image
telford-hiker

CT scan booked in for Tuesday morning 🤞🏻

AArrggh - my main operation was in August 2017. About 15 months ago I also lost my voice. Turns out it was a reoccurrence of the oesophageal cancer somewhere in my right neck region which was compressing a nerve to my vocal chords.

In some ways it was a good early warning sign and after a year of chemotheraphy, a couple of weeks of daily radiotherapy it does appear to have been beaten for the second time.

Hope everything goes OK for you

telford-hiker profile image
telford-hiker in reply toredsquirrelmeister

Wow..a year of chemo must have been tough ..really hope you’re ok ..not too sure I could cope with that …awaiting results from CT tho 🤞🏻

telford-hiker profile image
telford-hiker in reply toredsquirrelmeister

hi mate,first chemo done yesterday down..no where as bad as FLOT I had originally but do feel bit nauseous..my main concern is the really sore arm as if there’s an electric charge goin through it ..and the cold tingles in hands and feet ..I’ve been told to moisturise twice a day too stop peeling skin ..but annoying as I’m a keen Walker..is this 24/7 from now or just after the cannula infusion..?..I sincerely hope your still doin well with no problems ..

redsquirrelmeister profile image
redsquirrelmeister in reply totelford-hiker

Never had the sore arm but then again I never had any chemo drugs infused via my arm. Mine all went into the port in my chest and then straight into a major vein the neck. I have had that removed now though as they can see no sign of the tumour in my neck any more. It was quite funny when the surgeon that removed it was preparing me for the op - he said going to use the port for one last time to give me the sedative - I am a wimp - much prefer to know nothing about what is going on :)

Oxaliplatin was the drug that caused the pins and needles in my fingers. It is still there but very mild, possibly due to the 3 Gabapentin capsules I take every day for nerve problems. Eventually I was stopped from having that chemo drug.

Next thing was the Herceptin. One of the side effects is it can affect the heart. I was also taken off that after my last echo cardiogram as whatever they look at had fallen below an acceptable level. Oddly enough I have an appointment tomorrow morning with a cadiologist to review the findings etc. I then have my monthly 3 month CT scan and review with the Oncologist in December.

telford-hiker profile image
telford-hiker in reply toredsquirrelmeister

hi ..I’m on 800mg of capon morning and nights..it’s making me feel quite dizzy and nauseous still after infusion Monday ..was this normal for you..couldn’t really do much at mo other than lie around all day ..surely shouldn’t feel this bad

telford-hiker profile image
telford-hiker in reply totelford-hiker

capox

redsquirrelmeister profile image
redsquirrelmeister in reply totelford-hiker

I just looked up Capox guessing that you weren't taking a capon, a form of a cockerell 😀. Then I saw what it was - capecitabine & oxaliplatin. My first attempt with chemo this time round was cisplatin & capecitabine. I lasted a week. The capecitabine tablets were an absolute nightmare for me. I was basically asleep for the whole week I was taking them. In the end they moved me to a different combination of oxaliplatin, flourouracil, folinic acid and herceptin.

I eventually had to give up on oxaplatin as it was cuasing numbness and pins and needles in my fingers. Finally had to give up the Herceptin as it was weakening my heart, a known side effect.

But I managed it for the best part of 15 months and it did its work !!

telford-hiker profile image
telford-hiker in reply toredsquirrelmeister

soz asleep again ..must have been the capon 🙄😂..jokes I was goin under ..thanks for reply..I tried to ring hospital earlier..I felt worse than on FLOT…I’ll give it till Monday and if it’s the same,try and get it changed..😊

telford-hiker profile image
telford-hiker

At least it’s positive..that you beat it again 👏🏻 How long before loosing your voice and starting treatment.are you in the UK

redsquirrelmeister profile image
redsquirrelmeister in reply totelford-hiker

I am in the UK and in my case it was very quick. Saw the GP, waved the "I have private medical insurance" flag at him, saw the Upper GI surgeon who did my original operation within a few days, CT scan & PET scan, onto the oncologist very shortly after, again the same one as I saw 4 years previously.

Unoperable due to the location, apparently according to the oncologist the surgeons call it tiger country, they just don't go there.

I had one round of treatment, again very quickly, but it really didn't suit me at all. I had to take 3 tablets a day for 3 weeks, then a week off, three weeks on etc. Combined with Herceptin and Cisplatin by infusion. The tablets really threw me - spent the first week almost totally asleep and said I couldn't keep them up.

Moved to another regime, Herceptin every 3 weeks, folinic acid, flourouracil & oxaliplatin every 2 weeks. Eventually oncologist decided I had reached my limit of tolerating oxaliplatin so dropped that and moved to taking the other three on a 3 week cycle.

Throw in two weeks of daily radiotherapy sessions just before last Christmas.

Have a CT scan and echo cardiogram every 3 months and three months ago I was told they can see no sign of any remaining cancer. Had the echo cardiogram again last week but they found something not quite right so the Herceptin was dropped from my chemo session yesterday as it is the one that can damage the heart. I have my next CT scan next week and am pencilled in for another 3 months worth of chemo.

One day they might decide to stop it all if they continue to find nothing amiss

I do computer security work from home and have been able to keep that going with just the one day off every three weeks for the chemo sessions.

telford-hiker profile image
telford-hiker in reply toredsquirrelmeister

Wow ..that’s a lot of treatment and fast ..any chest pains ,as that seems to have started..I’ve booked 7 days on 17 September in Scotland to fo Ben Nevis for our 40th anniversary,as I had to cancel after I got diagnosed..but I’m not private so may have to wait ..I had FLOT chemo originally which knocked me about ..how do the tablets make you feel..you must have been goin thro it a while now ..can’t imagine how tough it must be ..any other symptoms

redsquirrelmeister profile image
redsquirrelmeister in reply totelford-hiker

When you mentioned FLOT I had never heard of it so looked it up - it has three of the drugs I am taking flourouracil, leucovorin (folinic acid) and oxaliplatin.

I was originally on one called HRX - macmillan.org.uk/cancer-inf...

It was the capecitabine tablets that threw me - just had to stop it - extreme tiredness. Of all I have been through in the last 15 months or sothe tablets were by far the worst of all the treatments. Moved onto one called FOLFOX - flourouracil, leucovorin (folinic acid) and oxaliplatin and they threw in Herceptin (trastuzumab) from the original HRX.

oxaliplatin was eventually stopped as it was causing pins and needles in my fingers (nerve damage) and herceptin was stopped yesterday due to something they saw on the echo cardiogram.

So far I have had 21 cycles of chemo. The hospital I go to give you a treatment record book produced by Cancer Researck UK - I am now on the 4th book !!

The only side effect I have had from the chemo sessions is tiredness. No chest pains so far but it is one of the things they ask me about every time I go for blood tests and assessment on the Tuesday before the chemo on a Thursday. One other thing is I bruise very easily. My son's dog, a small cockerpoo, put her paws on my arm the other day and it looks like I have been mauled by a lion :-) I did have an extremely sore throat though following the radiotherapy.

The one slightly annoying thing about the fluorouracil is it is over 46 hours so a small vacuum pump thing in a small bottle gets attached last thing on the session on a Thursday. I carry the bottle around in a bum bag until the Saturday when a home care service comes out to disconnect it.

I have what is called a port in my chest which feeds directly into a major vein in my neck. I have to say it has been a godsend - no needles in my arms for blood etc - all comes via the port, and as I know exactly where it is I put some local anaesthetic cream on it about an hour before and I don't feel a thing :-)

telford-hiker profile image
telford-hiker in reply toredsquirrelmeister

Good luck 💚

telford-hiker profile image
telford-hiker

I had the pump in a bum bag ..but had to drive to Shrewsbury on a Friday to have it removed after Thursday chemo session..my beard fell out and I just felt like dyin for 2 or 3 days …..you sound so on top of it .. respect mate 🙌🏼

Deeedals profile image
Deeedals

Any further forward yet ?

telford-hiker profile image
telford-hiker in reply toDeeedals

Hi ..nah ..still waiting for results of CT scan ..I may ring up the surgeons nurse today as I’m on edge a bit lol…thanks for asking 🙏🏻

Cavalier3 profile image
Cavalier3 in reply totelford-hiker

I’ve been thinking about you too… let us know when you hear anything. I’m sure you’re going to be fine xxxx

telford-hiker profile image
telford-hiker in reply toCavalier3

Most kind 🙏🏻

Deeedals profile image
Deeedals

My fingers are crossed 🤞. Let me know xx

telford-hiker profile image
telford-hiker

🙏🏻🙏🏻🙏🏻

telford-hiker profile image
telford-hiker

so had the results of my scan,and not very good..cancer has returned in my esophagous and lymph nodes pressing down on my vocal chords..it is un operable..but possibly chemo and radiotherapy..may shrink it..They sent off for ‘markers’ from my original operation to be sent to Birmingham for analysis..to see what chemo will suit me best ..it’s all goobledegook to me ..but we had already arranged to go to Scotland for a week and climb Ben Nevis..amongst others ..so goin away for a week and face it all when I return,I didn’t see this coming and it’s put my head in the shed…just thought I’d update..thanks for kind words ,will post again after meeting with oncology in few weeks

Mauser1905 profile image
Mauser1905 in reply totelford-hiker

for the spirit to enjoy your 40th anniversary. Hope you both enjoy the time away together.

telford-hiker profile image
telford-hiker in reply toMauser1905

🙏🏻

Deeedals profile image
Deeedals in reply totelford-hiker

I’m so sorry to hear your news. I can imagine your heads in the shed ! Go and enjoy your holiday the best you can then come back and fight this demon again.

Thinking of you xx

telford-hiker profile image
telford-hiker in reply toDeeedals

🙏🏻🙏🏻🙏🏻

Cavalier3 profile image
Cavalier3 in reply totelford-hiker

so sorry I’ve only just seen this.. well I hope you had a fantastic time in Scotland and the weather was kind for Ben Nevis. Absolutely gutted to hear you have to fight this again but you will. Thinking of you

telford-hiker profile image
telford-hiker in reply toCavalier3

it was Misty up top but good views on way up and down tbf..brutal on the legs ,but needed to be ✅ ticked off..just completed 52 of 52 times up the Wrekin our local hill yesterday now to face this again 💪🏻 Thank you 🙏🏻

Cavalier3 profile image
Cavalier3 in reply totelford-hiker

it was like pea soup up there both times I’ve been.. o found it tough my first time 14 years ago! A lot younger then too! You’ve done amazing. You will look it in the face and beat it again. 🙏🏻 we’re all with you x

telford-hiker profile image
telford-hiker in reply toCavalier3

🙏🏻🙏🏻🙏🏻

Helenmick profile image
Helenmick

sorry to hear this, i see you are in birmingham my hubby was under Heartlands, Raj Nijjar. Will be thinking of you in the coming weeks and months while you try and kick this again. Sending much love xx

telford-hiker profile image
telford-hiker in reply toHelenmick

🙏🏻Good luck to your husband too

Notknowmuch profile image
Notknowmuch

Have a lovely Anniversary. Sending you prayers for quick access to treatment and successful outcome from treatments.

Stay positive and fit.

Deeedals profile image
Deeedals

Thinking of you and hope you managed to enjoy your Ben Nevis trip. Xxxxx

telford-hiker profile image
telford-hiker

hi yes thank you..Ben Nevis was brutal 4 half hrs up and 4 down..hardest mountain we have ever done ✅ ticked off..now to face the music,or oncology I mean ..hope your well

Ben Nevis summit
Cavalier3 profile image
Cavalier3

I’ve been up there a couple of times. You have another mountain to climb now but you will kick it’s arse too!

telford-hiker profile image
telford-hiker in reply toCavalier3

🙏🏻 Thank you 😊

Deeedals profile image
Deeedals

thinking of you ❤️

telford-hiker profile image
telford-hiker in reply toDeeedals

🙏🏻 Chemo starts 7th November 🙏🏻

Deeedals profile image
Deeedals in reply totelford-hiker

Good luck for tomorrow. I’ll be in theatre as I have complications of a total blockage from stomach onwards following my emergency surgery last week when my bowel ruptured up through my diaphragm into my chest. I’m with you in spirit though xxxx

telford-hiker profile image
telford-hiker in reply toDeeedals

thank you ..sounds like you need it too ..hope it all goes well ..keep us posted ❤️

Deeedals profile image
Deeedals

you’re in my thoughts, here’s to good tolerance and positive outcome . Keep in touch when you can xx

Cavalier3 profile image
Cavalier3

Good luck for Monday! Loving your walks on Instagram.. thinking of you 🙏🏻👊🏻 You’ve got this

telford-hiker profile image
telford-hiker in reply toCavalier3

🙏🏻 Thank you ..am I following you. 😊

Cavalier3 profile image
Cavalier3

Following you too!!!

telford-hiker profile image
telford-hiker in reply toCavalier3

I lost my old Instagram account telford_hiker is it still live ,my new one is telford.hiker ..what’s your Instagram name ..I have looked but can’t see cavalier6..

Cavalier3 profile image
Cavalier3 in reply totelford-hiker

I’m following your new one. I’m theratpackcavaliers

telford-hiker profile image
telford-hiker in reply toCavalier3

awww great ..nice to be freinds with people who understand each other 🙏🏻

Cavalier3 profile image
Cavalier3 in reply totelford-hiker

it really is… my husband, family and friends are amazing but it’s hard for them to fully understand. I do put a brave face on too as I’m sure we all do!

telford-hiker profile image
telford-hiker in reply toCavalier3

exactly that…never ends for us ..ecspcially dumping or worrying..I do hope your doin well

telford-hiker profile image
telford-hiker in reply toCavalier3

lyndsey_stomach_cancer has also been on the same journey..our timings have been very similar..she’s amazing too ..you should add her ..always nice to have back up

Cavalier3 profile image
Cavalier3 in reply totelford-hiker

you’re right she is amazing! I find it hard to be so open about it all. I wish I could.

telford-hiker profile image
telford-hiker in reply toCavalier3

I put it out there on fb ..just so it may help and I got loads of positive response like Lyndey..a guy called Les pickersgil who had been my mentor too came down from Yorkshire to stay at a local hotel and have his picture taken by the ‘Wrekin wall’ ,which is a group some mates set up for me to give me support while covid was on ..it’s a picture on a wall by our local hill ..it’s on Instagram too ,I’ll add you to group ..all in all I’ve met some great people..and helped others too ..are you on fb..I added my post about returning cancer and had a massive positive response..it all gives you a boost ..😊

Cavalier3 profile image
Cavalier3 in reply totelford-hiker

Hello.. yes I’m on Facebook.. I will have a look for you now. I had my parents and niece over yesterday for my birthday so I’ve only just read your message. Awake at silly o’clock as normal!!!! You’ve got some good friends. I have too and a best friend that has been through cancer so that helps as she understands.

telford-hiker profile image
telford-hiker in reply toCavalier3

happy belated birthday 🥳

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