enquiry

Hi Ichi and welcome to the group. 

I was diagnosed with SCC HPV+ cancer over 4 years ago (see my profile for a convoluted story!).  In the end my primary was at the base of my tongue.  I underwent chemo and radiotherapy starting 8th January this year for a total of 6 weeks radio and 5 session of chemo.  There has to be a good reason for them to do both - normally it is because some of the cancer has spread to the neck lymph node.  This is not dangerous n itself as the lymph nodes are doing their job of catching the cancer cells before they get to the rest of the body.

Everyone reacts differently to the treatment, but in my case I was one of the luckier ones in terms of coping with the treatment.  Make no bones about it the treatment is brutal and you have to prepare yourself for a rough ride.  The winning bonus is that over  90% of people who take that ride are cured of their cancer.

Each hospital will be different in their approach.  I had daily radiotherapy, Monday to Friday for the 6 weeks and every Thursday had chemo.  Some hospitals may only give the same amount of chemo in only 2 or three doses.  Until the last week of radio I found the chem was the most challenging bit.  That last week of radio was very much an uphill struggle.

One thing I would advise you to consider is the option of having a PEG or an NG tube fitted.  I went for the PEG and still use it.  Eating will almost certainly become a very painful challenge at some stage during and post treatment.  Being prepared for that is sensible.

Recovery is long and arduous.  I slept most of the 3 weeks following the end of my treatment and now some 8 weeks after finishing I am only just starting to find the energy to do things like walking the dog etc.  I am glad I don't have to work as it would be a few more months before I could face that.  Getting back to normal with eating and drinking will be a challenge and it may never return the way you had it before treatment.

All of that sounds challenging. It is.  However, there are a lot on here that go on to have a very good quality of life, different to what you had before, but still a good one.

Stay with us and ask any questions.  None are to silly to ask! 

Hi ichi 

Whether you have chemotherapy or not depends on your stage. As Peter has said that usually means advanced local disease or spread to lymph nodes. On the days you have chemotherapy they will fit your RT in either at the end or even while you are still attached to the infusion. The saline you get to protect your kidneys fills your tissues with fluid and might make your mask tight. Some people get their RT in the morning and go on to have chemo afterwards which avoids this problem. 
The chemotherapy acts as a radiosensitiser to make the radiation more effective. Some people are unable to have the whole course especially if they are getting cisplatin but it adds only 6% to chance of cure so missing some isn’t crucial. 
Radiotherapy is pretty dire. Take Peter’s advice and insist on PEG or RIG. 

Hi I had chemo snd radiotherapy more in my blog below. My trust did the chemo every z3 rd week I was due 3 but onky had 2.  On chemo days radiotherapy was slotted inbetween the saline snd the chemo either before or afterwards depending when a machine was free.best advise take the anti sickness meds ans steroids as directed.
Hazel  

Hello Ichi, I had 6 weeks radiotherapy (RT) plus weekly chemo Sept-Nov 2022 for advanced HPV+ cancer in base of tongue and two lymph nodes in neck. First thing to say is that I'm fine and all clear now (touch wood)! The effects of the treatment are really tough, it causes a really sore mouth so most people end up with a PEG, RIG or NG tube for a while, as swallowing gets too painful, and you feel quite ill and exhausted for a few weeks. The day you get chemo is a long one, the RT is quicker only 15 minutes or so. The effects slowly start to lift 2-4 weeks after treatment ends but recovery takes a while.

I found this forum absolutely amazing for information and support so please stick with us and ask anything you like,  or just have a moan - we've all been there!

Catriona

Hi Ichi 

Welcome to this wonderful group where you will find amazing people at different stages of diagnosis,treatment, recovery or like Hazel and Dani cancer free living their best lives!

The first thing I would say is always stay hopeful , this can be a very tough treatment so don't compare yourself with anyone else as your cancer, your treatment plan, and the way your body copes with it all is as unique and individual as we all are.

I had a very tough time as my Oncologist needed to really blast my T4 tonsil cancer( spread to base of tongue left tonsil and several lymph nodes in neck) I had 7 weeks of Radiotherapy( daily mon-fri my lovely Mum drove me to all appointments as I couldn't drive )and 2 of the 3 planned overnight chemos(10hr each but took 14)Sadly I was very ill after my body didn't have time to recover from having several teeth removed followed by having a lifesaving PIG( feeding tube fitted)then day later started chemo and radiotherapy so spent nearly 5 out of the 7 weeks in hospital.

After treatment ends its a relief but, its still tough, for many its 4-8 weeks before you feel your way to recovery.

Im now 18 weeks since treatment ended, I am loving being able to drivie, no longer on any medication.  ( from being on lots) I can walk a little, eat a bit of soup and a trifle each day . I still rely on my feeding tube to get extra water and 2000 calorie liquid feed ,I also have lymphedema ( swelling from radiotherapy,not everyone gets this) and struggle with fatigue but wow life is sweet ️and I am thankful for lots of things I previously took for granted.

Listen to your body , rest  when you need to, stay away from google,ask your team( radiotherapist CNS Oncologist anyquestions ) or this group who will support you through this.

You can do it, I wish you all the best for your treatment x

Debbie 

I had chemo + radio for HPV+ve tonsil cancer last summer. Radio 5x per week, carboplatin 1x per week. The chemo caused me almost no problems while I was having it, but did have neutropenia and a couple of days in hospital at the end because of a fever. The radio was not nice. Morphine from week 4 and then until 4-6 weeks post treatment. Eating became close to impossible but could always swallow so didn't use the RIG tube (but was v glad it was there in case). Worst time is for 2 weeks after finishing the treatment. Fatigue, complete loss of taste, loss of saliva, pain were my major symptoms, continuing (but lessening) for 5-6 months after treatment. 

Now, 7 months post treatment, doing well. Back to work, no pain, no fatigue. Major residual issue is diet: mouth is dry (and will remain that way) so a lot of food is difficult / impossible .Bread, pasta, chips, all dry food is out. A small price to pay though!

Good luck with your treatment. It's tough, but you get over it.

thank you for your story and what you went through, it is all so daunting, especially as i am doing it on my own as i live on my own, now i know what to expect, i have a picture in mind, probably not prepared mentally too much as it all still seems so overwhelming, i am hoping to speak to a dietician as i am  concerned about the shakes they give you for the sugar levels as i am diet controlled diabetic, i am glad you got through it and are now cancer free, i know it is probably a slow recovery for you, but you are alive and hopefully in recovery for a long long time, i wish you well

Mike Rq said:

Major residual issue is diet: mouth is dry (and will remain that way) so a lot of food is difficult / impossible .Bread, pasta, chips, all dry food is out. A small price to pay though!

It may well not be. In time a lot of dry mouth can be improved. What worked for me was chewing gum to stimulate remaining salivary function, acupuncture and time. Your submandibular and hopefully just the one parotid gland are shot forever but hopefully your RT spared one parotid. The tiny salivary glands dotted about your mouth and throat and the one at the back of your nose do seem to recover. By three years I could eat anything dry without having to sip water to help me chew. Adding moisture to bread and chips is key. Salad and tomato to bread and mayo or ketchup to chips. Don’t despair. 

fingers crossed

I am sure your dietitians will be able to sort out appropriate food for you. 

At this stage try to find out alternatives for getting to treatment - friends, relatives, community hospital transport etc.  I was happy to drive the 110 mile round trip for a few weeks and probably would have done it the whole way through except when they put me on opioid painkillers I said that was the end of my driving as I may become dangerous.  Almost certainly you will need something like morphine towards the middle/end of treatment.