Base of Tongue Cancer

Hi Paul

I had a friend request from you last night, thanks for that, but there was a problem when I pressed on the link to accept it and it disappeared.  So I have now sent a request to you.

Hi Younpa,
It appears you are having the same cancer/treatment as I had. I was diagnosed Oct'16 at 64yo with a T4N2M0 base of tongue cancer (70% success rate). Minor swallowing symptoms same as you. Likewise HPV16 positive and just a few partners. I haven't had any teeth removed so I can be thankful for that.

Treatment was 2 all day sessions of chemo plus a pressurised pump that pushed chemo into me via a PICC line for 6days x 24 hrs which I had with me at home. The chemo was doable although it caused hair loss and lots of sickness. I had a few issues: I had the PICC line for approx 8 weeks, each week it needs a flush. Unfortunately one time I was very dehydrated and passed out at a nursing centre (that had the staff to do PICC's). I was blue-lighted to A&E. (moral: keep the fluids up). Another time the PICC caused a DVT and became blocked. This resulted in several months of daily injecting "Fragmin" into my stomach to prevent further clots. The PICC line was moved to the other arm. The chemo also made it *very* painful to pass solids. The term "trying to sh** broken glass" comes to mind.
For several weeks around chemo, if you need to visit A&E (I was told to) insist on being contained in a separate room. Your immune system is severely compromised around this time.

My RT began in November. Although I didn't have speech problems around Xmas'16 I couldn't swallow anything and I had to use my PEG.
I found it difficult to maintain the number of daily meals so my weight fell by a couple of st. Care and cleaning of the PEG is essential. A couple of times it became infected and required antibotics.
Unfortunately losing weight meant my RT mask became loose and this meant RT setup took longer.

After 5 of 7 weeks of RT my neck became very burnt and my throat felt terrible, I was on 2 types of strong pain killers. The burnt neck carried on for several weeks after RT.
Morphine caused me a lot of depression and "dark-thoughts". I suggest keeping in mind this is a process to endur and focus on getting through each day.
Side effects of the RT caused my taste buds to die and saliva to dry up. When I restarted eating soft foods it took trial and error to learn what to eat. Tomatoes were horrific so was white/red wine, although beer was fine (go figure).
Around June'17 I had a scan with radioactive tracer to check my whole body and was given the all clear a few weeks later. Wahoo.
Currently, some 13 months after treatment, I still suffer from a dry throat however (I think) this has improved. I was told it can take upto 2 years and may never be 100%.
I would recommend keeping in touch with this forum and if you have problems during the dead of night or just want to shoutout. Come to this group to chat.
Best of luck with your treatment, I hope you have an easier time, but possibly you may have other issues.

All the best and keep an eye on getting through each day.
Chris

Thanks for your words to Younpa, you can see I also replied with an experience similar to yours. As you say "bread balls up", for me I miss croissants. As you I also have a dry throat and wake several times each night. Until very recently my throat seem to build up with phlegm to an extent where each night I would have to get out of bed to sit up for an hour or so. Gradually this has improved and I'm sleeping better now.

I was told recovery can continue for 2 years but may not completely recover. As your treatment was approx 5 years ago, it sounds like your saliva may be as good as it gets.

Good luck for the future.

Chris

 As someone whose partner has only recently finished treatment for exactly the same diagnosis as you, I thought I would share our experiences. The first thing I would say is everything is temporary. It would have helped us immensely to know this at the outset. Like you, we were consumed with anxiety and fear about the treatment and possible side effects. We used the mantra of one day at a time, sometimes even one hour at a time, and marked off the days of treatment. Before we knew it, we were out the other side and are now on the road to recovery. We kept a daily diary and charting the progress, although slow,has been such an inspiration. My partner had all the common side effects, but they are manageable and temporary. We are now nearly 5 months post treatment and although he still has a dry mouth, chewing gum helps relieve this. Taste changes were the biggest problem, but we can now eat out in restaurants and there's always something he can manage and enjoy, on the menu. We also had the help of a cancer specialist counsellor for a couple of sessions immediately after treatment which was very useful, giving us practical tips to cope with the days when he had low mood, which I believe is quite common. I wish you well as you start on this journey, but by the summer, the worst will be behind you, and for all the problems along the way, this site and the wonderful people on here, will help you along. 

With very best wishes

Carol

Hi everyone

I have also been diagnosed with this throat cancer from HPV virus a couple of weeks ago. I am a 47 yr old woman never smoked or drunk much either!

Complete shock, mine was noticed when my lymph became swollen and I was experiencing swallowing difficulties.

I had a biopsy and CT scan last week and it's stage 3, started behind the tonsil and on left side and in lymph. They want me to have 6 back teeth removed too which has really upset me.

6 weeks radiotherapy and 5 session of chemo to start after those teeth removed.

I too have looked at Michael Douglas case which brings me hope.

My doctor has said this can be cured and it's not spread so that great news but I'm am so very nervous of the side effects like you.

I can't believe this is happening to be honest.

Josie has given me hope too that perhaps the side effects are manageable.

Not sure if I should have the tummy tube or not.

Scared is in understatement of how I am feeling right now.

Hi there,

First, a big hug for you!  I was 45 when I was diagnosed with tonsil cancer that had spread to neck lymph node, and I didn't have any of the normal risk factors, so it also came as a huge shock and felt very surreal.  I had a few days of being convinced that I was going to die, and then common sense kicked in and I realised that while it was pretty tough whichever way I looked at it, the overwhelming majority of people who have HPV positive cancers come out the other side and are absolutely fine.  As far as I know, the fact that it is HPV positive is about the best news that you can get in the world of cancer treatment, because it responds so well to the radio and chemotherapy.

As for the side effects, that is the subject of one of the two books that I am writing, with some of the other forum members.  They are all manageable, and over the years people have posted all kinds of wonderful ways of coping with them, so I am trying to bring all this together to save future patients from having to continually reinvent the wheel.  I am going as fast as I can on it all, but in the meantime if you have questions then please post, and you will receive lots of answers.

As for the stomach tube, there was a thread on this a few months ago.  In summary, there are two perspectives; those who don't want one because they think it will help them to keep swallowing; and those who want it as a safety net.

I fell into the 'safety net' group, and I am very glad that I chose the way I did because for various reasons I found eating virtually impossible for almost the whole six weeks of treatment.  I kept eating as much as I could throughout, which helped me to keep my swallowing working properly, but I also had the possibility of adding to my calorie intake in a way that didn't cause me pain or make me nauseous.  In the end it was literally a lifesaver, because despite my best efforts I could only eat about 300 calories a day by mouth, which is nothing like enough even when you are well, never mind when you need extra to help you cope with the effects of the treatment too.

Finally, it's not just Michael Douglas who has got through this - there are loads of us on the forum, and we are all here to support you from here onwards.

Best wishes,

Josie

Thankyou Josie it's great to have you reply to me so quick  

Hearing your story is helping me so much so thankyou.

I'll keep in touch and your book sounds an amazing idea.

I'm coming to terms with it all, it is a massive shock to deal with but I know I can get through it, just get emotional a lot at the moment!

I'm sad about my 6 teeth but realise it's a preventive thing.

Thanks again for the virtual hug  

S

I had a base of tongue cancer T4. 2 chemo sessions 35 RT. I had a PEG fitted "as a safety net" but was keen not to use it. I was persuaded since having it fitted before treatment was going to be much-much easier than fitting it well into the treatment. After approx 5 weeks of RT, I couldn't swallow a thing so I had to use the PEG for several weeks. Although it was essential, its a very boring replacement from having actual food. Once your back to eating normally i

t gives you a whole new viewpoint on eating at home or away.

My pleasure! 

I do understand about how emotional it was - I spent two days bursting into tears at the drop of a hat, which is really not me, and I even got as far as checking the life insurance policies and writing down all my usernames and passwords for my many online accounts. It sounds ridiculous when I say it now, but it seemed perfectly sensible at the time.

Good luck with the teeth, and keep us posted on how it's going.

Best wishes,

Josie

Hi Josie, my husband was diagnosed with HPB base of tongue/tonsil in July 17. He under went 6 weeks of Chemo/radiotherapy. Finished in Oct & the ‘pet scan ‘ came back clear last Thursday. He’s a young 61 & back at work. He had a RIG fitted & did need to use it,but made him self eat normally since Dec & now they have removed it. He suffered no pain or mouth ulcers during treatment or sicknesses but the mucus & dry mouth was bad & obviously still is. The doctors/surgeon admitted they damaged a nerve in tongue when doing biopsy befor3 treatment started.Thus is irreparable. Butif his other symptoms improve,its a small price to pay. Never would 8 have thought this horrible disease would touch us,he’s fit,non smoker. I keep on at our 28 year old daughter to have her 3 yearly smear done. Even though she had the HPV vaccination  done whilst at school,she should still go. Hopefully one day they’ll make a. Vaccination for men. My husbands taste buds haven’t returned yet.