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Had results today from biopsy on tonsil and now know its cancer, its all been really quick what with scans and hospital visits so not really had time to think about it now it's just starting to sink in but I'm pretty positive, I'm told its spread to a lymph node has anyone else had this 

HiAli

I am sorry to hear your diagnosis, but the first thing I would say is there is always hope. Al my friend here has the same and is currently undergoing all the treatment. He is having a six week course of radiotherapy and chemotherapy over most of the week meaning daily trips. The first thing they have to do is make sure you have no teeth that will get corroded by treatment so need removing first,. They then measure you for the mask this apparently is quite comfortable. They then arrrange the neginnings of the treatment. It will not be easy so you will need a good support system around you - family, macmillans, friends especially when you have down days. Some people loose taste buds during treatment some can find swallowing hard but if you look back on our talks there are mouth exeercises to do. 

Find all the exciting food things you love that are highly flacoured and stock up you will need to keep your weight up and need things that are exciting to make you smile. 

good luck i am here is you want to talk. 

stay strong x

That's fantastic news, really pleased for you

hubby has lymphodema too in his neck, we're waiting for an appt with the lymph nurse.  He found a swelling just below his ear the other day which is tender and concerned him but it's gone down a bit now so hopefully it's nothing serious.  We did contact our CNS and she was going to speak to the consultant to see if he wants to bring his MRI forward so that he has the results for his appt on 27th but we've not heard back from her!  We only have this week then we go away for a week so I doubt we'll get the scan any earlier nowHe's eating and drinking fine but still having 3 ensures a day for the calories.  

Hi Judy

It's no fun all the waiting I had my mri earlier than expected as I only finished treatment 16th June, good news that your husband is eating normally and the ensures are great they are full of vitamins, I think recovery takes a bit longer when you get older I'm 53 and I was doing really well but I'm having problems now I noticed it was painful below my ears and jaw now I have swelling under my chin which is worse early hours and in morning and makes it difficult to swallow I'm going to the Maggie centre in clatterbrige on Tuesday so hopefully will get some advice about it I've also lost hearing in my right ear, I sound like I'm falling apart I'm supposed to be reassuring you lol I really do feel good in myself, try not to worry and have a lovely holiday

Take care 

Allison x

Snap! He has also got hearing loss in his right ear (the same side as the cancer) I've just made an appt for a hearing check with the audiologist, he says it's like they feel blocked.  He finished his treatment on 18th May but from what I gather from other peoples experience he's had more chemo, (2 cycles consisting of 6 hours of 2 drugs then 4 more days of continuous infusion via pump at home, 2 weeks off then same again. After that he had 2 more cycles on day 1 and 21 of radiotherapy.  He's loads better now and actually starting to get back to 'normal' but obviously we can't completely relax until we've had a positive scan. X

Hi Judy

That is a lot of chemo no wonder its took a longer time to get back to normal, I was supposed to have 2 rounds of carbaplatin but only had one on the first week because it made me so ill I was in the hospital for 5 days to get a flare of my ulcerative colitis under control the consultant thought it would just make me ill again so I just had the 1 and 30 rounds of radiation, I think in most cases the hearing loss is permanent so they will probably give him a hearing aid I've just had mine and its been a godsend I was driving the kids mad lol

Take care 

Allison x

Hi Judy

Hope it was good news when you went for appointment, how are you doing

Allison x

Hi Alli

we feel a lot more at ease after the appt, he had a couple of worrying issues, one was a lump/swelling on the same side as the cancer under the jawline and the other was a couple of small lesions at the back of his mouth but the consultant thinks the lump is a blocked saliva gland damaged by the radiotherapy and he wasn't concerned with lesions at all.  He had a good look down his throat with the camera and is happy, he says there's slight radiotherapy changes still there but even to me it looked healthy.  The deafness again is probably the chemo, he has an appt with audiologist next week.  He had his MRI yesterday too and we are going back for the results in 3 weeks, it would have been sooner but we are going to Malta in 10 days and I don't think they'll phone with results as we have always had face to face consultations with everyone from the start.  Thank you for asking, hopefully we will get the news we want xx

Hi Judy

That sounds promising and hopefully the swelling will go down soon, I'm the same I now have swelling below left ear which is painful on the same side as the cancer was I originally had it on the right but that went down and i still have a patch of what I think is Mucositis on left side of throat but doctor wasn't worried, I hope you have a lovely holiday try not to worry 

Take care

Allison x

hi everyone 

sorry to hear people are still having problems or effects from the treatment and I really hope you get sorted. it is such a long road for you guys for recovery. Judy enjoy your malta trip. 

take care 

x

Hi Alli

hope you are doing ok just wanted to let you know hubby had his results today, they said he had a really good response to treatment, the MRI was clear and there is no sign of any cancer.  We are absolutely delighted.  The swelling I told you about below his ear has gone, they think it was a blocked saliva gland which is common due the radiotherapy damage.

Its fantastic that we've all had such positive results isn't it.

Take care

Judy x

Hi Judy

That's amazing news I'm so pleased, I had a pet scan last week so waiting for results I'm hoping its just precautionary did your husband have a pet scan as well as the mri

Allison x

Hi Judy

That's amazing news I'm so pleased, I had a pet scan last week so waiting for results I'm hoping its just precautionary did your husband have a pet scan as well as the mri

Allison x

No, just the MRI but he had a PET scan 2 weeks before he started chemo because the CT scan showed 'highlighted' chest nodes! It scared us to death at the time but they were sure they were just reactive nodes and the PET scan confirmed this.
 I asked the consultant today if he would be having anymore scans and he said only if they had cause for concern.

im sure everything will be fine, it seems every hospital trust does things a little differently.  I'll keep everything crossed for you, let me know how it goes.

Good luck x

Hi Judy

Hope you and hubby are well, the Macmillan nurse chased up my pet scan results and its flagged something in my throat she said it may be nothing but appt brought forward for another scope and possibly cameras down under anaesthetic, trying to be positive but my throats been so sore I can't help but worry

Allison x

Hi Alli

im sorry to hear you're still having problems, when is your next appt?  Your MRI was only 8 weeks ago and it was clear so although we all know only to well it's really hard, try not to worry too much.  
As I said previously my husbands PET scan showed suspicious activity and he had to have an EBUS which is basically a scope which goes down the throat to the lungs and takes a biopsy, fortunately these were found to just be reactive nodes but it was a very worrying time.  
I'll keep everything crossed for you, please keep in touch.

thinking of you, take care x

Judy

Hi Judy

I know its never ending my appt has been brought forward the 10th November with oncologist and i have appt with ent to so hopefully it's good news and I can stop worrying all the time

Take care 

Allison xx

Hi Alli

Hubby has had a letter this morning from Oncology stating that because he has recently had chemo/radiotherapy for cancer he needs to have an extra third covid vaccination followed by his booster! 
He's already had his booster jab so we are a bit confused Lol, I'm going to ring them on Monday for clarification but just wondered if you had been given this information? 
 

Thanks

Hi Judy

No have not heard anything I had my second jab 21st of June so thought I would call gp tomorrow about booster, will let you know what they say  sounds hope its just the one lol

Have a good weekend

Allison xx

Hi Judy

Spoke to gp surgery and they asked if I'd had a letter about having third jab and booster so they are doing that to vulnerable people, I havnt had one so just booked booster, spoke to Macmillan nurse and they discussed me at mdt meeting and they don't know whether I still have residual disease going on Monday to see doctor I asked my options if it is and she said immunotherapy which is not a cure just prolongs so a bit scared now , trying not to over think it and stay positive

Take care

Allison xx

Oh Alli, I'm so sorry to read thisI I really hope they're wrong, did they say how they were going to clarify this?  It seems strange given that your MRI was clear.  Could it possibly still be radiotherapy changes?  
you'll probably get a letter eventually, I spoke to my husbands GP and because he's already had his booster they say he will be called for the 4th dose in 6 months time.

I will be thinking about you on Monday, everything will be crossed, good luck
 

love Judy x

Hi Alli

I really hope your k and the residual is just lymphadenopathy left over not actual cancer. keep positive we are routing for you. sending positive vibes and virtual hug xx

This week has not been easy so far but am coping am hurting a bit today otheriwse ok thanks prednisolone makes me a little emotional sometimes but have halved dose now so should settle down. still taking all anti sickness etc 25 tabs each morning lol. 

I wasnt aware there is 4 vaccinations? i had the booster and so did the other half as we are vulnerable too and immunosuppressed but had not heard about four vaccines will have to look that up. arms were a little stiff and sore to touch otherwise no side effects hubby was more of a baby!! hehe. 

take care 

hope your ok JUdy x

Hi Elona

I am good, thank you, very relieved that hubbys treatment has been successful but if I'm totally honest there's just a tiny worry that sits in the back of my mind and prods me every now and again asking if the cancer will return! but I imagine everyone who has been through this has the same fears!

25 tablets a day, WOW, that's a lot of meds to keep on top of, how are you feeling? Those steroids really are a *** for messing you up aren't they, did you manage to return to work in the end?

What's happening in the world of the mini mafia, are they still around?

Judy xx