Hi

Welcome to the site and sorry you have cause to find us here.

I do not know anything much about throat cancer but I can tell you a few things.

Back in early January I was diagnosed with Stage 4 High Grade Lymphoma.  I felt fine and it was only becuase the lymph nodes in my neck swelled up hugely that I went to the doctor got referred tot he hopsital and diagnosed.  One node was removed for biopsy but all the others were huge.  Consultant told me after a number of chemo sessions that I had looked like an alien!

After 4 cycles of chemotherapy no trace of the disease was found.  My neck had reduced bak to normal between sessions 2 and 3.  The consultant was concerned enough at the beginning to put me on steriods to try and reduce the swelling before chemo began but this did not work and chemo started early because the disease was so agressive.

To date I have had 6 full cyles of chemo and the first of two partial sessions which I am told are more immunotherap than chemo.  I have not had radiotherapy but both my sister and cousin have had both and found the radiotherapy a doddle compared to the chemo.

I was warned that my treatment was quite harsh as the disease was so agressive but I have to say I found it was not as bad as I had expected.  After the first treatment I was almost on eggshells expecting to feel really awful at any moment but whilst I did have a few off days on the whole it was nowhere near as bad as I had expected.  The chemo tends to make you feel worse than the disease itself.  The chemo can have a cumulative effect which means that you can feel worse after sessions 5 and 6 than you did before.  That said the worst I had was loss of appetite, change of taste (there were a lot of things I could no longer eat) and a few days of tiredness.  That said I felt more tired after the first partial which was only one drug as opposed to the six drugs I had been getting on the full chemo.  I did lose my hair before session 2 but it did not bother me and whilst I have a wig I only wear it when I go out. 

I have no doubt others will be along to reply to you who have experience of your disease but though I would give you an insight in to what might happen.

Very best whishes and do let us know how you get on.

Gill

Gill

Thanks for your quick response

You obviously have it a lot worse then myself, but thanks for the infor

At the moment I am in the dark and as you rightfully state its the treatment that hits you as opposed to the cancer itself

I know i am in the infancy of this and within a couple of weeks I will get my treatment plan ... I am just trying to be ahead of things so that i can work round things for the company that i run

As for the side effect ... well its just something i have to go throughtto get better ... so i will just have to get on with ... its just knowing or anticipating what might happens and how crap i am going to feel in the next 6 weeks of treatment and afterwards

Can you tell me actuall after you had your chemo cycles how long was it before you felt yourself again

Hi Vatch,

Wecome to the club, mate!

You are in excatly the same position that I was in 12 months ago. Swollen lymph node, unknown primary, lots of biopsies with tubes up the nose and down the throat and stuff. All in all it was a really difficult time. Eventually diagnosed as tongue base cancer. There then followed 6 weeks of chemno and radiotherapy. Chemo was Cisplatin. The lymph node swelling went down around 2-3 weeks into the treatment and never returned. It was a rough ride, but hey, I'm cured. I've had 6 or 7 clear check-ups and life is slowly retruning to some form of normality.

Remember - this thing is definitely curable. Most people survive throat cancer nowadays. Do not research the outcome prognosis on the internet. Most information there is out of date and includes data concerning people who are not like you - elderly, people with other illnesses, data from non-UK countries etc. etc. Get any information about the likely prognosis from your oncologist - he or she will know your precise situation and likely outcome. I'd be really surprised if they said anything less than an 80% chance of a positive outcome at 5 years - probably better.

I won't go into the ins and outs of my treatment on this thread because they are recorded elsewhere on this site. Check out the following two threads threads (sorry, can't paste links for some reason)......

  Newbie - Tongue base cancer. That's my thread.

  Tongue Cancer - Diagnosed two days ago. That's Nicola's thread. This one is really comprehensive and, although Nicola's cancer is not exactly the same as yours, you'll find that her experiences will not be too wide of the mark. There are lots of experiences from other people on that one as well.

Everyone on the above threads share one thing (other than having had cancer) - they are all lovely people and can offer a lot in terms of advice and support.

Good luck, mate. You WILL beat this (as we have all done) and in twelve months time you'll be typing a message to someone else, roughly the same as the message I've just typed to you.......

Simon.

hi Simon and thanks for the warm welcome "to the club" lol

Yep had loads of camera and tubes and about to go for final diagnostic op for all the biopsies ... thinking is that it may be tonsil remnant tissue even though i had them out when i was 8, but they are not dicounting the back of the tongue ... all thats being done on monday

As you say its cureable so I am in a much more positive fram of mind than on the day when they told me i had a secindary cancer site an nothing else ... it does make me feel a bit of a whimp now concidering some of the experiences on here.

I did start to read tongue cancer thread but it appeared a bit far off the mark that i stopeed reading

as for the internet I have not bothered and trusted my multiple health professionals to guide me through ... and they have been brialliant so far ... i only got on to this as i wanted to talk to real people who hadgone through what i am now about to face and i know that everyone deals with it differently but if i can view the spectrum then I have a vague idea

I will go look at the threads again, but thanks for the positive reminders it is a great help and i hope that once i am through this i can help other too

Simon

Just read your post and most informative ... Im nearly 52 and sporty ... don't smoke amd a social drinker so like you the cancer is nota lifestyle thing ... it just happened

Thanks

Vatch Im week 6 treatment. Initially they couldn't find a primary but after taking lump out found ne in my tonsil. There is a thread called branchial cyst here by a guy called access which has a huge amount of info. IM in for 33 Rt and 3 chemo which ends next week. Let me know if I can answer any questions. If you post on the other thread also there are a lot of people who have been through it like Simon here.Good luck and let me know if you need anything, G.

Hi Vatch

I thought Simon would be one of those to reply to your post because I knew he had been through pretty much the same as you.

You did mention about nausea and constipation.  With regard to nausea they give you tablets that you can take if you need to.  With me they said for the first two treatments just take them and from then on only take them if you need them.  With regard to constipation if this is a problem they will give you additional tablets to deal with this.   For me it was not a problem but it can for many people but a lot depends on the actual chemo you are given and that fact that everyone is different.

After each chemo session I was tired the next day but felt ok within a couple of days apart from the lack of appetite and taste.  Taste is not completely back to normal even now and I have read posts from people who have said they are over a year on from chemo and still have one or two things they can't eat.  Funnily enough no-one seems to have a problem with the taste of alcohol!

Hope all goes well with the further tests etc.

You will find once you get your treatment plan that the time will go much more quickly.  The waiting is the worst part and seems to last forever but it seemed life a lifetime when I was toldin early January about my treatment and here I am almost at the end of it and due back at work on Monday!  Was told by consultant that I could not work (open plan office with about 45 employees) becuase the risk of infection was too great.  That said i know one guy who was treated for Prostate Cancer and he worked right up until his final chemo session and only had a week off.  He worked for a very small company so there was far less risk of infection.

Best wishes and let us know how you get on.

Gill

catch. I am pegless. Still eating. Jogged 3 miles yesterday (slowly) and have excercised/maintained weight throughout but slowed things down. Constipation is a side effect of painkillers if you get sore throat which I  I have but they give you laxatives to counter. The treatment is tough but doable. They will give you worst case side effects. There is a good blog called Theo the radioactive man on word press. Access is also very knowledgable as are people like Simon. Let me know if I can help.

hi Guzzle

Thanks for your post

As far as i know I have been told that initially no op needed as the chemo will get rid of the secondary lump in my neck ... so for now its just 6 weeks of Radio and Chemo Therapy

My main concern is keeping my company going whilst i am going through this and trying to pre-empt what time i am going to be away and what state i will be in whilst going through it ... i know everyone is different

I am assuming the following if all goes to plan ... which i am not expecting it to

Weeks 1-2 - this will hit me from the start, sickness i can hopefully get under control, but will take time, but although on a reduced bases I am still hoping to make days into work ... but for how??? how long is a piece of string

Weeks 3-4 - Im expecting not to be able to drive and reduced hours at work (working from home) ... i am also assuming to be dealing with, more sickness, feeding issues, mucus, pain management, heavy fatigue and communication issues

Weeks 5-6 - practically a write off but i will do what i can, peg feed in situ, mucus, sickness, fatigue, constipation, pain management, communication issues

Weeks 7-8 - getting over bit but still write offs, peg feeding, mucus, pain management, fatigue constipation sicknessand the rest

Weeks 9-10 - Phased return back to work ... a mixture of working from home and sporadic trips into the office

months after 1-3 generally getting better but much of the above symptoms still remaining and not much movement on appitite and therefore weight gain

Months 4-6 - on the mend and getting there

Months 7-9 - dealing with

Now i know the best laid plans go to waste and the above is one of many scenarios that could happen ...  i could be worse ....  i could be better ... in a range of things

I know you are only part way through your treatment so will only be able to advise up to a certain point

Oh you might have guess but i am a project manager hences me trying to box this all initially, with the acceptance of all plans going out of the window

Any advice would be appreciated

Vatch

Gill thanks for your post

I think I am trying to do the impossible here in trying to plan the impact as i run a small company and need to keep it running whilst i am going through the treatment

So in someway I am trying to plan for the inevitable but i am totally aware that everyone goes through this differently ... but boxing this up in to chunks ( I am a project manager) helps me deal with this in my own perverse way ... be my analagies or perceptions be right or wrong

however that said I am also aware that my health and wellbeing comes first, so what will be will be, but talking to you all has given me a great insight into what i am about to go through and as you say once i get my treatment plan things will get clearer

Thanks for the advice and hope things are well with you

Vatch