Base of Tongue with spread to Lymph Nodes in Neck

Thanks Dani! I'll give it my best efforts. One day at a time.

Hi Dan - So nice to hear you are getting through those weeks and so far so good! 

My start date was delayed 1 week so I'm starting day 1 on Monday (4 July). In the meantime I've been to the dentist for a scale and polish, also had my bloods done yesterday for the start of chemo. I'll be in all day on Monday - starting with cisplatin then off to RT later in the afternoon. I'll have my 2nd cisplatin, all being well, in wk 4. Although I was disappointed to have a delay, it couldn't be helped as my oncologist had been on holiday and the RT team wanted more days planning with him - can't blame them for their diligence, as I want a platinum plan for my treatment after all!

I hope my appetite and eating go as well as yours. I've been eating a lot of calories the last 2 weeks. I lost a bit of weight after my tonsillectomy, for obvious reasons; then a little more after the initial diagnosis due to stressing out! But it came back with a vengeance and I'm eating loads now 

Keep us posted and I'll let you know how I'm getting on by the end of my wk1.

Helen x

Hi Helen, I'm glad to hear you have your appetite back. You should now be ready for the main show.

They switched me over to platinum  from Carbo. The iv is 3.25-hrs versus 1.0-hr for Carbo. The difference is they hydrate you for two hours before the platinum.

Anyhow, all the best!

Dan

Hello to All,

I've started week five and all is going as well as can be expected. 

I've lost my taste buds so food doesn't taste good at all. I'm down about 5-kilo in weight. I could easily handle that and more.

I'm having a sensation of razor blades in my throat when I swallow anything, including water. They gave me a morphine (Apo-Hydromorphone) to numb the throat that allows me to swallow.

I'm mostly on soups, smoothies, oatmeal with berries and lots of milk . Poached eggs still work as well.

I hope everything is going well with your treatment Helen.

All the best,

Dan

Hi Dan. You are doing really well swallowing anything at all at this stage.Well done

Hi Dan well done on week 5 snd still eating. Keep it up. 
Hazel x

Hi Dan - 

Glad you're still eating in wk 5 - that's my aim! Keep up the great work!  How's wk 6?

I'm coming to the end of wk 4 and still swallowing! But I've been knocked back by my chemo (I had my 2nd of 2 cisplatin this Monday) and nausea has returned but getting juice/ smoothie drinks down, eating very little. I just tried spaghetti and 3 tiny bites of fillet steak - no problem swalowing, but made be feel nauseous so I'll leave it for a few days I think!

I had a RIG tube fitted last week which was extremely painful and knocked me back a few days, but the pain has subsided and stopped taking painkillers about 5 days afterwards.

I'm hoping week 5 &6 go quickly so I can get into recovery, with less hospital journeys...

Helen x

Hello all,

I just have two make up days to complete (today and tomorrow) for radiation.

I had trouble in week  six. The pain killers just weren't cutting it. They put me on an i.v. dehydration a couple of times but I still can't eat or swallow.

They never offered a RIG tube as an option.

I'm not sure how to get back to eating or even an effective hydration program. 

Any idea on when I'll get my taste buds back? Noting tastes edible. I just get a involuntary vomit reflex or gag reflex.

Helen, I'm glad you had the RIG tube option. I can only imagine the pain but I'll guarantee it was the best option.  

Hi Dan how are you taking your pain meds then ! Poor you. Will they fit a n g tube ? Worth asking. Sorry you’ve had a rough time. As fir taste it will slowly return but in the meantime food is fuel was my mantra. It was a case of eat to live not live to eat. 
have you the high calorie food drinks to try to sip. Surely they can’t expect y ou not to eat or drink  please ask tomorrow about n g tube. 
Hazel x

Hi Dan, 

• I survived on the high calorie skandishakes given out by dietician and then prescribed by doctor for quite some time. I counted the calories and tried to make it up with anything I could but they were definitely the staple.
  I began to taste a few things a month after treatment  but most things I tried tasted disgusting. My taste is coming back now around week 13 post treatment and I’m just beginning to enjoy meals (toast covered in runny egg, fish with lots of sauce, vegetables with gravy) I can’t taste everything fully but I notice improvements all the time. I even had nachos covered with cheese and guacamole at the weekend. 
  hope that is encouraging. 
  Clare.