Another no taste question

Hi taste is subjective it varies for all of us. I personally took the food Is fuel thinking  I  knew I needed calories to aid recovery   I got  very little pleasure from food  I can syilll get metallic taste even 7 years on usually something acidic can start it for me  

. Yes there are a  few  who have had cancer return they usually say after year 2 it’s a slight chance but it’s not a reoccurrence it’s usually the cells left behind that are too teeny to be picked up by scans if that makes sense. But please don’t worry you’ll drive yourself mad thinking of that. hpv driven tumours have over a 90%  cure rate take heart from that. 

Hugs Hazel 

markmac said:

Now my husband has some taste but it lessens w every bite he has. ( first bite is tasty!!

Hi. This is really common. It happens to a lot of us. You take a bite of something, the saliva comes and you taste it …. Hooray! Then it goes. So frustrating. 
The metallic taste is due to the cisplatin ( which is a platinum based) and it does dissipate over time. 

markmac said:

Has anyone w head and neck had recurrence.  Since this is a curable dx. Esp those associated with hpv.

 A recurrence happens when some of the original tumour cells evade treatment and grow into another cancer. Thankfully HPV driven oropharyngeal cancer is very sensitive to RT and has a 90% cure rate. So those are pretty good odds; better than any other cancer. It’s a fear that we all carry but it recedes as time goes by. My “hugely sensitive” oncologist blithely told me I would have to live with it so I did. 

Wd a recurrence still be hpv related? 

Yes it would be eg if in lungs it would be hpv lung cancer. But it’s rare 90% cure rate is as good as yih can get. Don’t waste time thinking what if.please get in with living 

Hazel 

My consultant explained the taste/then no taste to me clinically.  The taste buds in someone who has not had treatment can be occasionally be overwhelmed.  Normally it is a sugar hit that does that.  It takes about 30 minutes to settle down and taste to return.  In out case the taste buds are even more sensitive to flavours and get overwhelmed more easily, more quickly and to a greater extent.  That is why our taste is there one minute and gone the next, only to return later in the day.  It does get better with time and experience of what foods we can eat easily.

I hope he perseveres with eating.  Little and often is a good maxim.  I am now a year out and since Christmas have made great strides with my diet exploring more and different foods, textures and tastes.  Time is the great healer.

Reoccurrence happens but it is rare as cure rates are very high.

markmac said:

Wd a recurrence still be hpv related? 

A recurrence is a resurgence of the same cancer either in the same place or metastatically so yes but it really isn’t worth stressing over. It’s rare and outside your control. 
It’s why we are monitored for five years. 

PFJTHS said:

  That is why our taste is there one minute and gone the next,

Thanks

I knew you had a scientific explanation. Fascinating 

There is a school of thought about taste bud regeneration... they renew every 2 weeks, Chemo/radio will have a massive impact on this theory I would think...20 months post treatment and my taste is still improving...I am challenging myself weekly to eat things that I don't tolerate well as a result of Chemoradio ...it sometimes works.

Peter 

Hi Mark. In relation to recurrences. I have had 3 occurrences of jaw cancer all in different places over time and each time successfully treated. My cancer is not HPV related it is due to lichen planus that I had from my mid 40's (not all incidents of lichen planus become cancerous, I was just one of the unfortunate ones) and HPV cancers have a much better cure rate.  Each time I have been successfully treated and am happily living my life. The 3 monthly checkups I have were what picked things up. I decided to let my consultant do the worrying and not waste my life needlessly worrying about something that may not occur. It is now 3 years since my last op and I am firing on all cylinders albeit with some changes and looking forward to many more adventures.

Lyn