hi Christine,

my doctor actually told me before surgery that i likely wouldn't speak or easy for up to a year. so i was pretty pleasantly surprised when i was able to talk after the surgery. like cheek said, my Drs. were the best in this field, at least in Canada. that's one of the reasons. doctors always tell you the worst case scenario. seeing what kate was able to do even shortly after treatment, i feel very positive!

Hi Cheryl ,

Dr Bayley is my radiation specialist. he is very personable. just saw him 2 days ago. He Actually said he was dumbfounded that i was able to have a conversation with him.

Kate is certainly an inspiration and with her I'm even more hopeful that i will regain my speech, eating and taste!

Joseph

Hi,

I guess you are lucky not to need chemo or radiation. Perhaps because your tumor was not as serious.

Me oh yes I had to chemo and radiation - I was a stage 2 - with perineural involvement - and a node that popped up between dx and surgery. I had 40 nodes removed. One had a bit of cancer outside it that reinforced the radiation decision ( dr. Irish said in his opinion I was cured. This was a safety measure... Just in case. ) did 33 ads and 2 chemo... Theyll keep you in overnight for chemo. good luck you'll do fine... If you need anything let me know. Hugs - you'll get through it,

hi Cheryl ,

What type of chemo did you receive? They are planning the same Tx for me: 33 rad and 2 chemo. I will have to to stay overnight for the chemo.

Thank You so much for your support.

It's cisplatin, it's very hard on the kidneys that's why they keep you in overnight, this way they pump you full of fluids, and keep you jogging off to the bathroom all night. They'll test your hearing and send you to the dental oncologist at PMH... Have you met your medical oncologist yet?

Chemo for me wasn't too bad... Some people have a brutal time of it.

Good luck.

Hi Cheryl,

Thanks for the info. I'm diabetic so my kidneys are not at their best. I hope the Cisplatin is not going to kill them. So how do they administer it, through iv?

Yes, they have booked the hearing, mask, swallowing CT, chemo oncologist, and dental pathology appointments for me week. Will be seeing the oncology surgeon June 8. He is the point person for my case . I guess radiation starts after I see him.

Joseph,

You are already my hero!

Hi there.. They will give you a room (I had one on the 18th floor it was private and had a great view - they'll run an IV of fluids and an anti emetic and then the chemo. Then they run fluids all night - I think a lot of chemos are hard on the kidneys... This one in particular has a reputation that's why they keep you in - its protocol. Plus chemos of course can cause severe nausea and vomiting - so the forced hydration lessens the possibiliilty of you going home throwing up a lot and ending up in the hospital longer because of dehydration.

Not many hospitals have this protocol.

Next day they'll squeeze your rads in before kicking you out with a fist full of prescriptions.

After your treatment dr Irish and bayley will tag team you... You'll do a check up with bayley - go home to recover - then at three month intervals you'll see Irish and bayley... Once your on the mend. And at the three month mark post treatment you'll have a ct. unless of course you have a problem and need to be monitored more closely.

They'll give you pamphlets read them and do what's in them.. Have they set up your appointment for a peg yet?

I had one but didn't use it. I just drank my nutrition for about 4 weeks (the worst weeks)... What they don't tell you is radiation is cumulative - the two weeks after treatment are the worst!!! Gene Simmons and I know each other well as they had a marathon on during my recovery and between that and some forensic shows I lived in a reality show haze between naps.. Though I did walk my dog...

It's not an easy treatment and by the standard norm I was Blessed as for me as horrible as it was - I wasn't that bad! If you are diabetic - diet is very important as is hydration. They dietician kind of let me do my own thing as long as I didn't lose too much weight - (I'm a veg head so my protein came from a scoop or two of vegan protein powder - which is actualy a good option for you as it utilizes stevia (no glycemic impact) not the standard sugar found in most powders - I would add a scoop to my boost or ensure (they have a diabetic brand) and hit my required protein intake plus a little more daily)

Good luck with all your appointments - push to start it quickly - I know that sounds unwise but I was out of surgery and into rads at the 5 - 6 week mark. and ask about the ct results when you see your rads dr. My faith was a tad shaken when he said "if there was something to note then I would have" the look on my face told him I didn't buy it (sorry I expect that when you come not see me you know exactly what's up... Spend a minute and read the damn report) after some cuffuffle where he sent a student to read it came back and freaked me out - about a chest ct which I later found out was normal - he went on to tell me that my head ct was just a baseline scan to determine where to place the radiation.

That evening I called my nurse (still upset about the chest ct) and she said he wanted to see me the next day - at this appointment (I thought he was going to reassure me about the chest ct) - he proceeded to tell me I had a 3 mm node highlight on the other side of my neck and he was rewriting my treatment to include that side - just in case. It could very well have been an infection, or inflammation as I'd come back from Mexico 3 days prior to the ct.. But I was okay with the extra treatment. My concern in all this is that had I not asked he might not have changed my treatment and on the off chance it was cancer I could very well have been facing a recurrence.

Re the chest ct I talked to my family dr. And he actually read me the report saying it was identical to my first one and everything was clear... This was 8 mos after the incident!

Anyway, my point in all this is. It's a fantastic hospital with amazing drs - but you still need to advocate for yourself. Take care... And good luck...

Hey Cheryl,

Sorry you had to go through all of that. At least you caught it now.

The hospital is very good and the docs are great, the nurses are fantastic. All the nurses have a very positive attitude, except for one, I was very happy with them.

One thing actually got missed, they forgot about the stitches on my 3 ft incision on my left thigh. When I asked Dr. Bayley when I saw him last Thursday, he said he will get someone to take care of it, but no one has yet. The only contact I have is Dr Irish's secretary so my daughter has been emailing her asking about this. She has been a great supporter and advocate for me, asking lots of questions, doing the research on site like this one, and asking her doctor friends.

I hope I make it through the chemo and radiation alright. I read with horror with the type of reactions people have in the other forums and frankly, I am a little shaken up. I can only pray for extra mercy from God!

I read that it is better to have many lighter doses than few strong ones. I don't know if it is the case for me. I will ask the chemo oncologist when I see him.

I've had a G-tube put in while I was at the hospital recovering from the surgery. I need to use it because of my complete glossectomy. I cannot swallow at this point in time. I have been feeding through it entirely ever since. Yhey've given me Isosource 1.5 for food, but the dietitian for some reason only prescribe 5 cans a day, which only provides 1800 kcal, which is not enough. So after talking to the home care dietitian, I increased it to 8 cans daily, which provides a more reasonable 3000 kcal. I'vs lost 25lbs and want to regain some of it back.