Hey!

Yup, radio today, day off tomorrow.

Just took the Christmas tree down because I felt like doing it now and maybe I wouldn't have wanted to later.  So, something done today. You say you are back at work? What do you do? 

My nurse this morning wasn't sure of my numbers. I have a practical appointment on Wednesday and will ask then. I will be getting a row because I haven't been using the Caphosol properly. It makes me gag. I have been rinsing with bicarbonate of soda as recommended by the American Cancer Association. 

However, I still have the rest of Christmas to put away and New Year stuff to do. Staying in, probably going right to bed after the bells. Hope you have a lovely peaceful time and a better year in 2019.

Allie

Hi Allie

i am superstitions sontree down in 12 th night not before. 

I retired in 2009 my hubby had to work away so I went with him up to Whitby prior to then I managed a business travel unit. So was a travel agent for iver 35 years started at 16. 

Now 61 and we have a long term apartment in Spain in rental that we try and use a few times a year but since diagnosis only managed 18 days in October. 

Hope you get some rest we are watching Harry Potter films our grandson james 8 is staying tonight. 

My hidpital didn’t gibe anything for gargling apart from a saline solution  bu carb I found dried my throat. So now use warm salt water t  

Keep in touch

hazel 

Hi Maria,

Going in tomorrow for my second chemo. Not looking forward to it at all. But it isn't much compared to other people's treatment so not going to moan about it (much).

Glad to hear you had a good holiday. I am planning my summer but don't have my partner's holiday dates yet and we change our minds about where to go every five minutes. 

I haven't got a feeding tube at all. In fact I had a fish supper tonight as I am going into hospital tomorrow. I am finding it hard to drink enough as everything I drink tastes horrible .Don't know why when I can get on the outside of fish and chips. No worries there. Also, not missing alcohol at all and I am a bit surprised at that. 

What a relief to hear you don't have an ovarian cyst to worry about. I had one of those out years ago and it was a right nuisance.

Anyway, better go and make sure I have ironed my pyjamas...

Allie

Hi all. My dad was just the other week diagnosed on his left tonsil, which has since been removed a few days ago. Just wondering what to expect when it comes to him going through radiotherapy? Any advice would be greatly appreciated. 

Thanks in advance. 

Ever 1 is different.I finished treatment 2 weeks ago had surgery twice removed tonsils and biopsy found cancer in right tonsil.then had tonsil bed and some soft pallet removed and neck dissection removed 37 lymph nodes removed.all came back clear apart from 1 lymph node which we knew :) .

As for radiation I had 6 weeks of it.after 2 week's lost my taste bubs and slavia which caused me eating proplem's but got to the end of the 6 weeks and on my last 1 end up in hospital for a feeding tube which really took the stress of me eating and still have it.as for pain I was 1 of the lucky 1s I did not need any pain relief at all and still not taken a tablet :) gut follow what the doctors and nurses say and u be fine.as for radiation burns again I use my own stuff as I do research and I tried my own stuff and again no burns just very red and after 10 days finishing it almost healed :) 

The 1 thing I think that made a massive difference and help me sleep as we need it to heal was a humidifier and xylimelts for night never woke up with a dry mouth.

But like I said ever 1 is different and people how been through this are all here to help and advice u what worked for them 

Thxs

Hi Rylan

like Jamie l says everyone is different I had radiation burns on neck and tongue due to targeting for margins to remove the cells needed. But I never lost taste or swallow did have feedingbtube as difficult to get enough nutrition in .

i have written a week by week blig

www.radioactiveraz.wordpress.com another good one is

www.gammaraygary.wordpress.com

good luck to your dad it’s harsh treatment but cure rate is good. I’ve had my final pet ct scan results next week..Hazel 

Hi all.

Thanks to everyone that has contributed to this thread. Your experience and advice here and on linked blogs has been invaluable.

My story.

Following referral last September by my GP for a 'suspicious' painless lump in my neck I was seen and reviewed by the ENT team at Addenbookes hospital.

 I had had this lump for quite some time.. maybe 9 months or so.

As an aside and maybe of interest in terms of possible cause I intuitively think that this has all developed from a particularly low point in my health in July 2017.  Maybe I am wrong but interested in the aetiology of disease.

I had undertaken a 6 month self supported solo cycle ride from Laos to Thailand and across the Nepal/Indian Himlayas. In Nepal, West of Pokhara I developed a really nasty tummy complaint resulting in a lot of intestinal mucus. I was little but skin and bones by the time I reached North India. I picked up a course of antibiotics on the border but then developed a terrible chest and throat infection as I cycled toward Ladakh. Those sleepless nights in the tent were really painful and considered abandoning my trip. However I thought it was just a virus infection and would be kicking myself if I headed home and was better a week or so later. I continued and was fine within a few days. I ate like a horse in Leh, Ladakh.
 Once back home and after a holiday with my family I contracted yet another throat infection. Nothing unusual with the autumn school term generating the latest virus to be shared by all. But then in December got another! That lasted several weeks and many appeared to be worried about a potential new global flu pandemic. Me.. I had a new (jugulodigastric) lump on my neck. I thought maybe it was a collection of pus.. maybe a quinsy and tried to ignore it hoping it would resolve. One thing tho; it didnt get any bigger and suffered no ill effects.

During last Summer as I was walking down the garden my wife at the kitchen door called out and said "I can see that lump from here".  I had left it for ages as it hadn't bothered me and finally decided that I should get it checked out. Also I had booked a late Autumn walking holiday in Nepal with my eldest son and wanted to get it sorted before we left. The GP did wonder, like I had, it if was something 'exotic' from my big trip the previous year. But remarked it could be something sinister and made a quick referral to Addenbrookes.
 
The speed and quality of the service including the excellent care provided by all staff in the following few weeks was truly amazing. I myself worked for much of my life in the NHS (in critical care) and always hoped that the care and standards of excellence was as good as any provided anywhere in the world. My own experience now as a patient has, so far, proved this to be very much the case. I cannot help feel for those all over the world that are unable to receive such top treatment free at the point of delivery.
 
I was initally diagnosed following ultrasound and biopsy with T1 N1 M0 with my left tonsil as the primary site and a single unilateral involved lymph node. I was asked if I would participate in the PATHOS study to help determine the appropriate treatment protocol for HPV+ (16) driven squamous cell carcinoma. I thought this a good opportunity to both receive a de-escalated treatment and help others facing the same situation. I gather it will be some years before the results of this and similar trials will produce sufficent evidence -  to create a 'gold standard' of treatment that will provide the best outcome in terms of both overall survival and quality of life. I had several radiologically observed swallow tests and filled out a few questionaires. I was given a date for surgery.

I had a bilateral laser tonsillectomy and three level (left) selective neck dissection. That involved day surgery with overnight stay. I managed to eat a little before discharge but once home found I was unable to eat or drink. Within a few days I passed out from dehydration. I picked myself up and did my utter best to force fluids in.  Let no-one think an adult tonsilletomy is easy. It took me about two weeks to feel better and a month to recover fully.
 
I felt relief and great joy that my primary and affected lymph node had been removed. I suprised my surgeon and gave her a big hug the evening I was discharged and cycled home. It felt like I was past it. 

The ENT follow up appointment and pathology of my specimens revealed that I had, and somewhat 'rare', a small amount of cancer to my right tonsil too. That placed me outside of the remit of the PATHOS trial. The good news was I had no extracapsular involvement for that one affected lymph node.  I was handed over to the oncologists for the standard head and neck chemo/radiotherapy treatment plan. That involved 6 weeks of weekly cisplatin and daily radiotherapy (30 treatments to a total of 65G)

I discussed carefully the potential implications of the full treatment given that I had marginally been slipped from a reduced radiotherapy (55G) and no chemo to the fully monty on the back of a few rogue cells found on my right tonsil. In particular I questioned the value of the chemo given that the jury is out on the appropriate level of treatment for HPV+ driven SCC. It is controversial. I heard the phrase ' a hammer to crack a nut' several times from health workers. The oncologist agreed that he too, if in my shoes, would be thinking carefully about de-escalation. He suggested that as my disease was at the lower end of risk chemotherapy would, in his opinion, confer between 5 and 10% benefit over and above that  provided with just radiotherapy. Statistics eh?  I was aged 57 and a typical mean age for patients facing this disease. I had picked up on the scientific papers and current trends. It probably doesn't help to overthink these things but felt encouraged by the good prognosis associated with HPV+ SCC. 

 My wife told me to take everything I can. But I worry about both short and long term quality of life issues. That is the dilemma. Clinicians are presented with younger patients with HPV+ driven cancer and quality of life is a huge factor in decision making.
I told the oncology team that I would have a low threshold for stopping chemo but very happy to follow clinical advice. I hoped to at least get through 4 rounds of systemic chemo treatment (into the new year) and give myself a better chance against a distal recurrence.  I appreciated many people are unable to tolerate treatment and so it might not be a matter of personal choice. 

I ate and ate before my treatment started on the 3rd of December and enjoyed some of my favourite foods. I managed to put on a bit of weight and got a bit chubby.  Chistmas was a bit rubbish but still managed to eat a little of the lunch.. even if it didn't taste like much.  

The first chemo was a breeze. It seemed to hit me a bit by the weekend. By the second chemo session I was feeling quite unwell. Not nauseous as such but felt a bit 'poisoned'. I had ringing in my ears and my hearing was knocked off a bit so that I had to ask people to repeat themselves. That said my hearing isn't great anyhow and suffer from slight deafness in one ear. By the time my third week's review came up I was at a low and had gone into a shell. My fluid and food intake had dived. The oncology senior registrar said she was taking me off the chemo. That was that. It was a clinical decision and I had no say. However the team knew that I was not keen on the heavy metal stuff..

Last friday was my last radiotherapy. Hurray! The moment that shell came off was a good one.

As I have been treated at the same centre as Vatch above I guess my story is mirrored well on his excellent blog. That includes the use of a feeding tube (PEG). I too recommend it if offered. It isn't nice and hate it too but it is a lifesaver and currently dependent on it. Pleased to say that I have had not had too much pain.

Thanks Vatch for giving me a heads up on what to expect.

I am now in my first week 'post treatment' and looking forward to recovery over the next few months.

Wishing you all a good year ahead.

Paul

 

HH Paul,

Welcome to our exclusive little club that no one wants to join .

imwas diagnosed in June after first visiting go 14th May 2018 put in cancerv14 days pathway and like younsay the NHS At it’s best ,well ok 2 slight misdiagnosis from an over exxited consultant who shouldn’t have 2nd guesssd !!

But after biopsy diagnosed T2N2NM0 a week later h p v 16 + confirmed .

i am niw 20 weeks post radiotherapy and received. ALl CLEAR on Monday after my pet ct scan.

We have another thing in common notice do the lump while in Spain we cycle so 1100 km ,I like you put it down to uh it’s nothing ! With a little niggle somewhere down in the back of my brain what is it. We even nicknames him Larry the lump later changed to Larry the Lymph.

I have been in touch with quite a few if us tonsil h p v 16+  cancer people and fitness is a common thread ,alsomquite a few of us in the previous year or 2 have putbweightbin unexpected and unable Tom shift itbthriugh dietnir exercise ,is it our bodies pre paring for the onslaught it’s goingbto have ? I have mentioned this to myMacmillan nurse ans now going to do then me with my excellent oncologist.

i has 35 radiotherapy sessions 70 gy in 35 fractions with a possibkec3 chemo but reduced to 2 after 2 nd one it was mutually decided that Larry has disappeared and I had successfully managed 2 sessions Dr Sen didn’t want to put me through the 3+rd .

I also found Vatch  blog invaluable and have written mine from diagnosis to results blog and will continue to help as many as I can.

I came across and excelent paper bybDr Peter Harvey Leeds teaching hospitals.

After the treatment finishes - What next.woikdnt reccomend googke normally but he is a recognised Dr 

my blog is  www.radioactiveraz.wordpress.com if you haven’t read it.

good luck with slow road to recovery .we fly to Spain in the morning for a little lightbexercise but 10 km a day will  be my starting point.

best wishes Haze

Hi Allie just to let yiu know I got the ALL CLEAR on Monday whoopee has justbsee oncologist in a year and local ENT consultant everyb3 monthes 

hope you are ok

Hazel