Hi, I am also new. Diagnosis confirmed last week of stage iv tongue cancer, which has spread to the lymph nodes on both sides of my neck. I meet with surgeon tomorrow to set a surgery date, and I'm in a panic that I won't ask the right questions. Any advice?

Welcome to OCF. I would suggest you read both the forum and main pages to educate yourself. We will help you thru whatever treatment plan your doctors come up with.

My advice is to eat all your favorite foods now and then have seconds. Dont worry about gaining weight you will likely lose some with whatever treatment you have done. Anyone who offers their assistance to you tell them when the time comes you will let them know what they can do to help. Even small things like running the vacuum or taking out the trash is a help when you are feeling lousy. You will want to line up several helpers to provide transportation, help with housework, etc. Always take an extra set of ears to your doctor appointments and take notes.

Best wishes!!!

Hopefully all goes well today. Sorry we didn't get to you with too much help before your appt.
In the event that your appt is later today...
Ask if they have tested for HPV.
Have blood work done to get a thyroid baseline.
What type of treatment are you getting? Are they going to do any induction chemo?
Diflucan for prevention of thrush.
Miralax for constipation from the pain meds.
Are you getting a port and a PEG?
Christine is right...EAT, EAT, EAT!! Once you begin tx things will never taste the same. At least in the near future, your sense of taste will eventually return. So eat your favorites and then eat them again while you can!!
Just some things right off hand.
Good luck today. We are here for you. You have a rough journey ahead, but we have been there and you can do it!! Do you have help in your home?
Keep us posted,
Kathy

Thanks. My appointment is still this afternoon.

While I would love to take your advice about eating (I loooove to eat), unfortunately, my tumor is big enough that it limits what I can chew, and swallow. I have lost 20 pounds in the last month.

What I know is that surgery will be in 4-6 weeks (I'll find out the date today). The neck dissection terrifies me, along with the possibility that they will need to dissect my jaw. Rad/chemo after that. PEG for a while, but who knows how long????

Everything I can find, research wise, is pretty general. I am a lawyer with my own firm (opened it one month before I was told to get a biopsy by a dentitst), and I'm afraid that will all fall apart. Will I be able to do some limited work from home? Are the good days, actually "good" or just not crappy?

My family is far away, but I have great friends. Also a bit terrified that at 39, my parents will decide to move in. I love them, but I don't think I can handle that too, and have no idea how to tell tham.

I'm babbling a bit, but it's all the things I haven't wanted to burden my frinds/family with.

Thanks for "listening".

Tina

Tina,

I know this is going to be hard to do but please try and calm down. Many of us were Staged a IV and had this Tx and are almost normal a couple of years out. Please read my Signature Line below. First off how were you diagnosed? Where is your Primary tumor located. Did they do a FNA on both sides of your neck? Did they do a biopsy on your Primary. What exactly have you been told and by whom? The more info we know, the better we can share our experience and knowledge.

I would NOT suggest you tell anyone "NO" when they offer their assistance. Now is NOT the time for having too much pride not to accept some help. Everyone needs a caregiver, especially if you are going to have a major surgery. Even if they just answer your telephone, get your mail and make sure you are getting enough calories and hydration. You may sail right thru everything, some do but others will struggle and end up hospitalized (that was me). Believe it or not you may be strong now but when the going gets tough you will not be yourself and need help and get this.... you will be soooo glad your parents are there. As I suggested in my previous post, dont tell anyone no, tell them all when the time comes you will let them know what they can do to help then write down their name and number.

I know you say your eating is compromised right now but you MUST get adequate intake or you will have a harder time of everything. Every single day you need to take in a minimum of 2500 calories and 48 oz of water. This is especially important during chemo and radiation. I know it sounds like way too much but its not, in fact if you can take in 3500 calories daily that would be even better. You wont gain weight either. This is because the cancer is burning up calories and your body is fighting very hard to ward it off so its burning them up too. Once treatment begins then your body is trying to heal which further burns the calories like crazy. Push yourself now to eat and drink. It will become more difficult down the road so get used to this. You will have a much harder time if you dont listen to this advice. Trust me, you do NOT want to end up hospitalized for malnutrition and dehydration. Even with having a feeding tube it can happen (that was me again). I didnt have a caregiver watching my intake so I would skimp and this is why its so important to have someone there for you every single day.

Your work may be possible from home or you may not be up to it. That is secondary right now. Your health is most important and this needs to be taken care of ASAP. Cancer has a way of becoming top priority over everything.

Best wishes!!!!

Hi Tina,
It is nice to meet you. I am sorry you have had to come here, but these forums will be a lifeline for you over the next few days, months, even years! Regarding your parents, in my story, I had just moved in next door to my ageing parents 2 months prior to being diagnosed, to help them more and to hopefully make their life easier and to make it more convieniant for us to do the things they could no longer do or needed help with.

2 months later I was diagnosed with tongue cancer! So guess who was helping who. I really don't know what I would have done if not for my poor 72 year old mom. I remember her crawling in bed with me at the hospital, just holding me while I cried myself to sleep. This is not a treatmnet that you are going to just sail through unscathed. It can be absolutely dibilitaing. I could not even literally speak for myself for over 3 surgery's. I must have spent a total of 20-25 days in the hospital, my family wouldn't leave me alone for even 1 night in the hospital, becouse when someone like us presses the "help" button from our hospital bed, the nurse will ask you over the intercome "How can I help you" guess what, you will not be able to speak to answer her. Now am really not trying to frighten you, but we have people here who had help to get through and people who have been on their own. They will back us when we tell you allow people who love you to help as much as possible. My advice is to listen to Christine...You will need all the help you can find. I don't mean to sound pushy or anything, I just sincerly want you to have everything you may need to get you through this horrible disease/treatment.

OK, so here is my story:

I knew something was wrong in March. I had a persistent sore throat. Went to my family doc - she said it was nothing. Went back in May she ran some blood tests, all normal. Went back in July because I could feel something on my tongue. She said it was a canker sore and tried to burn it off with silver nitrate. The following week, I went to a dentist, who told me I needed a biopsy, and I was ultimately referred to an ENT.

Biopsy confirmed stage IV tongue cancer. Pet scan confirmed that it had spread to the lymph nodes on both sides.

Surgeon today said he will be doing a modified radical neck dissection, and removing the nodes in zones I to V, along with partial glossectomy. I will be under the knife in 4 weeks. Six weeks after surgery, I start chemo/rad combined for 6 weeks. I don't know which chemo drugs yet.

I am 39, and was a smoker (threw them out when I was diagnosed). I got a prescription today for oxy to help me eat. I'm hoping that works. I have been making my own protein shakes, but I have been pretty run down (tired) so I don't think I am getting enough. I'll be meeting with a nutritionist soon to help with that.

I have a wonderful group of friends here who have all offered whatever I need. I just don't know what that is right now. I'm just going from appointment to appointment to appointment, and taking notes and doing research.

My parents have various health issues (my mom had 3 heart attacks last summer), and I don't want to compromise her health. I know I will need help, I just don't want to over-burden them, and cause her to get sick. I can't imagine the guilt of that on top of everything else.

I have been calm to everyone else, except here. Not sure how long that can hold out. I have full faith in my surgeon. He is a pioneer in Canada, and he has said this is "fixable". I know I can do this, but I am an admitted Type A personality, and hate the fact that have no control over this. Struggling with that.

If you were in the US I would be telling you to go to what we call a Comprehensive Cancer Center and get a 2nd opinion. My only concern are the bilateral neck dissections, whether or not they are needed. I know our cancers are probably caused by different agents but Moffitt, a top rated CCC in Florida, was the 5th doctor group that I had seen and they told me they would not advise doing a ND on me as the chemo/rad would do the trick.

Tina,
Did they tell you it is a Base of Tongue primary?
Kathy

No, thank goodness, it is the front - it runs along the left side of the front.

I've had 3 opinions, all saying the same thing. We have a similar institution here (the Cross Cancer Institute), which is the best in Canada - I'm lucky in that regard.

I got some painkillers today to help with the eating, so fingers crossed. If it works (I've taken the first pill and hoping it kicks in), I am eating a steak, and a giant salad with crunchy veg!

I would go ahead and get the ND. I was treated to the primary tumor with radiation only. My recurrence was in a lymph node in my neck even though they hit those with radiation also. The only way you can be sure you will not get a recurrence in your lymph nodes is to remove them. This is a very well-known procedure and is well tolerated so I see no reason not to get that done.

Thanks for all the advice and support. Sadly, I did not get my surgery date...still waiting, which I think is the hardest part. I'm not the most patient person on the planet. I think when this is all over I will have learned that trait, lol.

I am gratefult to have found this site.

Tina, I'm in a similar situation, impatiently awaiting a surgery date. However, my tumor is small so I'm eating like crazy and have gained some weight. I was already overweight but I've learned when it comes to cancer, extra is a good. I hope the pain meds worked and you were able to enjoy steak and crunchy veg! Best of luck to you!

Hi there... her surgery sounds a lot like it's oral tongue not base of tongue, especially based on treatment. If so it's likely not HPV related though one never knows - stranger things have happened.

Treatment sucks BIG TIME, more so than the surgery. The surgery is nothing - really I was on a beach two and a half weeks post op. I looked like I'd been hit by a truck but there was little pain. The problem with a neck dissection (bilateral) is that you will have some weakness in your shoulders and arms and numbness and tightness in your neck, jaw and ear - for a bit. It never truly goes away but it does improve - I had physio and did the exercises while I was walking my dog. You should recover fairly quickly from the surgery - then radiation slaps you back down ;o(

You will get there though... stay strong.

No steak for me, but I managed half a sandwich and some soup, which is a huge step up from smoothies and ensure (whoever created that stuff must never have drank it, and should be shot on sight).

I have a few extra pounds (less now than a month ago, but still a few to spare), so that's good, and I'm trying to keep it there. If someone had ever told me I'd be trying to gain weight, I'd have told them they were nuts! Oh, the irony.

Thank you for the post-op info Cheryl. I was hoping the period between would be decent - I'm not much for laying in bed, and am generally irritated that I am supposed to be in hospital for 2 weeks. Afraid my brain will rot...

I donated a kidney to my dad about 10 years ago, and they told me I'd be off work for 6 weeks. I was back in 6 days, so I am hoping for similar surgery recovery.

My sign is Taurus, born in the year of the ox, and my mother is scottish, so I am the most stubborn woman on the planet. This is a bump in the road, and damn sure won't get the better of me!

I'm a taurus too (libra rising I'm told) what province are you in? I hear you on the recovery I was itching to get out they told me ten days to two weeks. I was out in 10 and eating normally by week 3. If you are getting a Trache that's the worst part. See if they'll give you a fenestrated trache if they can because the other one sucks! Good luck!

I'm in Alberta (Edmonton). Yep, getting the trache - they said probably about 5 days. I'll look into the details about what kind. There is so much info to absorb...I should have paid more attention in anatomy class.

Still waiting on the surgery date, arghhhh.

Glad to hear about the eating and release. They'll regret getting me to talk, as I will be bugging them to let me out!

I'm heading to TO this weekend for the Jays/Yankees series - any recommended good restaurants? I don't care how much it hurts!

Welcome to the forum. Hopefully you will get your surgery date soon, but in the meantime you are doing the right things - keeping busy. In the couple of weeks between dx and surgery, I went to Florida!

Hope the Jays beat those "damn Yankees".

Donna
(Winnipeg, Manitoba)

Thanks Donna - I'm a transplanted 'Pegger living Alberta (my family is still there), but Winnipeg will always be home. Too bad the Blue and Gold are so bad this year, but I love 'em anyway!

I see you have gone through this twice - how did you find the process?

Hi Tina,

Saw your post on our introduction and I wanted to give you some insight into what we are going through.

Wife had a Stage IV cancer with one side of her lymph nodes affected and recently went through surgery.

The only difference was that 1 week prior to surgery, she gave birth to a boy which was a huge mission in itself!

Despite our concerns about how she would recover from two major events in the space of a week, she is currently watching tele right next to me having a laugh while enjoying a chocolate thickshake - this is just 2 weeks after the glossectomy which removed 3/4 of her oral tongue + a radical neck dissection as well!

I say this because I know we were daunted by the uncertainty around the surgery but were pleasantly surprised that things were a lot better than the doom and gloom scenario / script we were writing up in our heads.

Worrying and fearing about something that is beyond your control will only make the situation worse so stay positive and keep your chin up!

We will make sure that our prayers are with you during this uncertain phase and wish you all the best with your upcoming surgery.

Hey Tina - try terronis - Italian - awesome food reasonable price. It's on Adelaide in the heart of TO... I'm a veg head so I like fresh (there are several) where are you staying?

Thanks all, got the surgery date - October 11 (a bit quicker than the 4 weeks they were telling me), so it's coming up quick.

Had a hot dog at the ball park which was awesome, and watched my Jays take 2 of 4 from the Yankees!

Back to work in a few hours, to rearrange my schedule, sigh...it's going to be a long day.

Tina,

My first surgery is the same day as yours - October 11 and second is October 24. Soon!

Good luck on the 11th that's my sons bday! You'll scare yourself in the mirror for a week or so - eventually you'll feel like you! hugs! Seeing the jays tomorrow night! :

Karen, that sucks that you have 2 dates, they are doing mine all together - 14 hours. I should call Tim Burton to put me in one of his movies! Good luck to you and me both!

Thanks Cheryl, I'm oddly looking forward to it, to get it done. I'm bored with waiting. Hoping they make sure there are no little hairs on my forearm, it would drive me crazy to feel like I have a hair on my tongue the rest of my life...

We seem to be connected. I *love* Tim Burton movies. I've been telling everyone I'm going to be Frankenstein for Halloween this year. A couple of years ago with the mds, it was Dracula.

I'm not unhappy about the two dates. I'll possibly be in the hospital only overnight each time. My surgeon says I will not have a trach either, just a breathing tube during the actual surgery. It will be hell to go for the second when I'm barely feeling a little better from the first though.

October's always been my favorite month. Our 28th wedding anniversary is Oct 11 and Oct 24 is two days before my 59th birthday. My husband, Michael, gives me a small gift (often silly or macabre) every day from our anniversary to my birthday since I love Halloween, too.

I am with you all the way - I was looking at Bride of Frankenstein costumes just yesterday. Really, all I will need is the dress and the bolts!

So glad to hear your husband joins you in the same sense of humour. My parents are having a hard time with it, so I have to be careful not to make jokes with them. They are flying in this week, and staying for a month, thankfully, they head back home on the 30th - Just in time for Halloween!

Your husband sounds like a gem - congrats on keeping it together for so long, it is a real accomplishment. As a divorce lawyer it's hard not to get a bit jaded about marriage - thus I have remained single!

Any ideas on how to calm my parents down? I just found out that they called my best friend to see if I was "faking good" to them.

I have tried to reassure them that while I am stubborn and independant, I'm not stupid, and will ask for help. While awaiting surgery there is not much that anyone else can do for me at the moment.

I'm just not sure how to help them through this.

Just let them do anything they try to do. Buy stuff, clean stuff, organize stuff...just go with it. They will need to keep busy. Make/Let them feel needed. Start a honey do list today. There has to be a few things your dad can work on while he's there? The hardest thing for the caregiver is to feel helpless. I kept busy taking care of our 3 kids and my 87 year old mom, could NOT imagine not having that distraction.
Go for walks with them. Go out to dinner while you can. Let them treat you to your favorites. Live it up!! ;o)
Seriously though, keep them busy. When they see you in person they will see how positive you are and it will ease their minds.
Kathy

What does "faking good" translate to in US?

Thanks Kathy, well that saves me a trip to the grocery store tonight! Job jar it is...I'm totally blaming you if he complains!

My mother is 91 and the rest of the family said, "Oh, don't tell her anything until later." I disagreed. Besides the obvious problem that she is a technophile and reads my public blog, I've found that lack of accurate information tends to make imaginations run wild. So I told her that I will not withhold medical information from her, and I haven't. As soon as I have new information from tests or doctors, I pass it along in a "matter of fact" tone. I don't let her see how worried I am, and I don't tell her all the in-depth details I find through my own research. She appreciates being "the first to know." This seems to work well for us but I realize everyone is different. The others have given you good advice to let them be involved and helpful. Those who care about you need to feel useful instead of powerless. Mom isn't in a position to help me physically but I do let her buy me lunch :-).

I don't think he'll complain!! Especially being a man. They would rather do physical stuff then have to face emotional stuff. Good luck. Please let us know how THAT goes too!! And you can blame me. I'm not afraid!! ;o)
Kathy

David, I think "faking good" means pretending to be ok with things when she's really not!
Silly guy!

Yes, David, "faking good" is exactly how Kathy described - trust the caregiver to know the term, LOL.

I have told them the medical info, although I have not described the surgery, as damn, the thought of the details freaks me out.

I had an "education session" today, which is required here to outline the specifics of the procedure, and all of the tubes, monitors, drains, etc., I will be attached to. My best friend came with me, and she looked like she needed a drink afterward, so I definitely need to figure out how to fill my parents in without causing a panic attack.

I hope everyone elsewhere is provided the same kind of access to this type of service, as it was very helpful, albeit hard to hear, to prepare me. It also gave basic info like parking, and who to call for updates on the surgery so they don't have to be at the hospital for 14 hours. Kudoos to my team at the hospital for being so great.

Tina,

I was hoping for an education session like yours but did not get it. The more technical details, the better. It's great that you did!

K

It is overwhelming to hear it all at first, but once the wheels get rolling it all falls into place and makes more sense as you remember what you were told. Hoping one of you took notes though?
Your parents will freak. That's all there is to it. They will freak and then, hopefully, they will settle in and be ready to battle with you for the month that they are there. Course your dad will be busy fixing things!! ;o)
Good night!!
Kathy

Tina,

You are getting prepared and we will be with you 24/7 for as long as you want.

Hi Tina,

I just had my surgery done on Sep 14. Removed 3/4 of my tongue and left neck dis. No node were +, but pet show 2 big one.

Any way, my suggestion is eat what you love from now，take vit. C and iron everyday from now, and get you teeth check up ASAP!

Surgery is not scary, and what I found from this forum that Rad, and Chmo is not scary either! Just think +, and all the good thing in your life! Be strong!

We will make it!!!

Michael

Will, my father is 92! And I still have not told him about it, and I already had my surgery done on 9-14-2012.

My brothers also help me hide the news from him. A week after surgery I have told my olderest brother that it should be time to let dad know, and he told me no hurry, since my dad is still on a trip.

I think they don't want to worry him also, and want to have him see me health and strong to let him know the news...

What I try to said is talk to your brother and sisters before you do anything, then you are not alone!

Love Michael

Thanks all, had the pre-op meeting today. Good heavens can any appointment be less than 4 hours??????

Is it macabre to say I'm looking forward to the surgery?

My meds are working, and I ate pasta today...woo hoo, guilt free carbs! I am making turkey and fixings for the parents for Thanksgivin g (it's this weekend in Canada). I am planning on a turkey coma....

Michael, glad to hear you are doing well. We'll keep swapping notes!

Shopping for slippers tomorrow

Good luck with your surgery! You will be fine! Keep us posted how it goes! I have mine in a week..

Happy Thanksgiving, Tina (and other Canadian mates)! I had pre-op physical today, too, and like you am ready to get this done. I kept thinking of you today, wondering if you were going through similar paces. Wishing you all the best on Thursday and looking forward to comparing notes after it's all finished.

Karen

I am a newbie and I wish you all the best for your surgery. I pray for the best and God bless you!! Keep us posted

So, the big day is tomorrow. I'd be lying if I said I'm not pretty stressed at the moment.

I'm getting my ipad all connected up today, so I hope I can use it in hospital.

I'm at work right now and having a hard time concentrating even though I have about a million things that need to be done today. Yes, I know I should be focusing elsewhere, but it is just not possible with my work, and being the Type A personality, and self-admitted control freak...sigh, why couldn't I have just been born a slacker, lol.

Hope all is well with you Karen, and you're in my thoughts as well.

Max, if you see this, I'll be rooting for you on the 15th!

Tina

Tina, keeping busy and working helps to keep your mind active and hopefully from going into panic mode. Best wishes with everything tomorrow!!! Please post an update when you are able to. You will be in my thoughts.

Best wishes sister!! Will be thinking of you and waiting for your return updates when your up and running!
Best wishes,
Kathy

Hi Tina,

Yes I have seen your post. You will be in my thoughts tomorrow. Good luck Keep us posted as soon as you can

Good luck and keep us posted.

Sending lots of good thoughts your way, Tina! You, too, Max on the 15th! -Karen

Thanks Karen!

Tina, I hope you are doing well

Just got released from hospital. Surgery went perfect, but post-op issues - turns out the ng tube caused nausea, so had to be removed, then so much swelling they couldn't get an iv, but all is worked out, and am recuperating at home with my family.

Best wishes with your speedy recovery!

Tina, wonderful news that you're home already with your family! I'm glad the surgery went well. Best wishes for a speedy recovery.

Karen

Great to hear your surgery went well and we wish you the best of recoveries!

That great rest up... enjoy time with family.

so glad to hear your surgery went well! i wish you a speedy recovery!
my family has just left - they have been looking after me for a week.

tomorrow going to remove my neck clips - hopefully it will rotate better:)

Hey lady,
How's dad doing with his list?!!
Glad to hear you are home and still have your wonderful positive attitude. You truly rock!
Feel better soon and keep in touch!!
Kathy

Thanks all! Yep the doc said I was way ahead of the curve in terms of recovery. I sound like Brando in the godfather at the moment, and cannot wait for the swelling to go down to eat something more solid.

I am totally bride of Frankenstein and made a kid cry at the store today. I've never seen a more mortified mother in my life!

I have a pretty consistent cough, which is causing some havoc with the trach stitches and wow am I drooling, and alternating with super dry mouth. Any suggestions on those would be great.

Dad finished most of the list, although grumbled about it. I blamed you Kathy!

Hi Tina,

Jen said the best experience EVER was getting the Trachy out and that was the real turning point in her recovery.

As with the drooling & dry mouth, get the nurses to get you some cotton swabs (large headed ones) - soak it in water and use it as kind of a toothbrush to clean in and around the inside of the teeth, gums and tongue.

With the eating - it will take a while for you to gain function back but I can assure you that it will come back over time.

Great to hear that the recovery is going well and the positive attitude will indeed go a long way!

p.s. Have they talked to you about further treatment at all?

Hi there eating post op for me wasn't too bad I just chewed and swallowed on the good side and stuck to maneuverable food (not mushy crap as that's a nightmare) - for me soft chewable veggies,vOmelettes , pasta etc... We're more manageable than say - mashed potatoes and pur�ed food. Hugs and hoping for a speedy recovery for you..

Hi guys, thanks Cheryl, they told me to stick with pur�ed food, and it was not working well. I tried pasta today and that was better.

Jay, I am waiting on pathology, but most likely will still need a 6 week course of chemo/radiation to make sure.

I have been trying to research chemo drugs, as some are harder on kidneys than others. I donated a kidney to my dad 10 years ago, so I would like to find the least harmful. Anyone know a good source for this info?

Cisplatin will be offered its hard on the kidneys so much so that they hook patients up to a 24 hr iv on chemo day and keep you overnight here in Toronto. Other hospitals don't do that but this I their poocol, but it's a good drug, so mayb ask to have the IV or enquire if carbo is easier. Cisplatin is the standard. best of luck - glad the pasta worked..

Well Tina, You are getting some very good advice here and I certainly can't add to it. Stay positive through it all. I had arterial chemo for BOT. I had to be hospitalized every week (4 weeks) for 3 days to get the chemo. First day to start the IV's, second day the treatment, third day continue the IV's flushing my system. This was along with 30 radiation treatments. Before every treatment I spoke these words "Thank you Lord for the healing I'm about to receive".

I also had a PEG tube. Funny story, I was sitting there one evening feeling about as bad as one can get. I thought, wait a minute, if I can pour Ensure down that tube, why can't I have me a little mixed drink and try to feel better. so I mixed one and poured it down. Pretty good, so why not another, hey this was pretty good. About that time the alcohol gave me indegestion and that acid started coming back up on that raw throat!! I was looking for a fire extinguisher fast. I poured everything I could down that tube to get it stopped!! Don't try that, please.

Anyway,if I can ever help, advise, etc. don't hesitate. You're going to be fine, just get in touch.

Thank you and best of luck.
Mac C.
Tennessee

I'll keep vodka off the list of approved nutrients!

I'm hoping to avoid the Peg, as is my doc, but we'll see how it goes.

It seems everyone gets cisplatin and that one seems to be the worst for the kidneys. Has anyone had other chemo drugs? I'm not sure how to research this without other names. Being a control freak I'd like to go in with some other options I'm at least aware of in advance.

Tina

Ask about carboplatin. It is every bit as effective as cisplatin since it's platinum based with far fewer side effects. DavidCPA here has often posted that every MO he has ever asked always says, oh yeah, carboplatin would work as well.
That has been my experience also, they just go with cisplatin as a matter of habit.

If you do get the peg, hard liquor and beer are out, but wine is fine.
Charm

Carboplatin is commonly substituted for Cisplatin. Its very similar and doesnt affect hearing like Cisplatin can.

Dont forget to get a hearing test and a full blood count including thyroid.

I was scheduled for Cisplatin until I told my doctor that I had some hearing loss from an old ear infection. He imediatly changed my chemo to Corboplatin. He saw very little difference.

Thanks. I'll look into that and discuss with doc.

Hi Tina,

Please note that the chemotherapy is NOT the primary treatment - it is the surgery & radiotherapy.

The chemo in Jen's case is used in low doses which amplifies the effect of the radiotherapy treatment, as well as get rid of any cancerous cells that may have escaped the lymph nodes to other parts of the body.

Hope that helps
Jay

Yes, I gathered, given that I have 30 rad and only 3 chemo, but I was worried about kidney damage.

By way of update, I am eating solid food, which is pretty damn exciting. Having perogies with bacon for dinner tonight! I have lost a bit more weight, but nothing substantial, and I'm still 145 lbs so I think I'm doing ok (that's only 4 lbs less than the day I went in for surgery).

Feeling pretty good, went into my office a couple of times, just for short periods, and it picked up my spirits to be doing something constructive. Everyone is shocked at how well I am talking (although I think I sound like the Godfather).

Waiting impatiently for the rest of the swelling to go down on the tongue, and less impatiently on the neck.

I am working hard to recuperate and my range of motion is coming along well on the shoulders and neck. The numbness on my ears is very irritating though.

All told I am doing very well. Best wishes to everyone else on their battles. I'm sure I will need your encouragement when phase 2 starts.

And we will be here!!
So glad to get your update. I think of you often. You are one fiesty lady so you will do well!!
Kathy

Hi Tina,

Ask the MO about your chemo treatment and see how they would feel if they put you on 7 x smaller doses than the '3 big bag' method which seems to be the plan in your case.

We had to make this decision and the 7 smaller doses were supposed to be more tolerable and it seems to be the case with Jen

Hi Tina

Glad that you are recovering well!

I am also doing well, today I tried to chew on the left side where the surgery took place - good progress)

Will have another surgery in a couple of weeks though but much simpler then the first one.

I also lost some weight - 4 kilo less than before surgery. I am actually glad that I have lost it as I had a bit more than I should have) now it's almost back to normal:) docs say if I lose more then they want to give me something to do with calories but I don't mind losing 2 more kilo:)

I agree that numbness is annoying I am feeling like the terminator - part of my face differs from the rest:) My ear is almost back to normal though... It's lower left part of my face and left side neck that are numb..

I wish you all the best and good luck with your phase 2 which I hope will go very well!

Max

Thanks guys (and girls). I'm keeping a notebook of things to ask the surgeon. I meet with him in 2 weeks so he can assess my recovery before scheduling the rad/chemo, so I will bring up all the issues raised.

Found some good info on carboplatin vs. cisplatin so that will be addressed too.

I saw something in various posts about a honey and some "magic" mouth rinse, but I'm not sure what people are talking about. Can anyone shed some light?

Tina - Magic Mouthwash is a prescription made up of several ingredients. My son used it and it was very helpful for numbing the inside of his mouth so he could eat. After using it for a while, and found that it didn't work as well, he used something that the pharmacist recommended over the counter and that worked. Later he went back to the Magic Mouthwash and was helpful again. You might ask your doctor about this. About the honey, that is Manuka Honey which some feel is very helpful in healing inside the mouth. You can get it at health foods stores and at 16+ strength. Anything you think about using should ALWAYS be checked out first with your doctor since even some vitamins may not be recommended or could be harmful. Everyone is different in their recovery. The Oral Cancer News has a couple of articles on Manuka Honey here:
http://oralcancernews.org/wp/?s=Manuka+Honey&x=0&y=0

So, I have all my follow up appointments this week. Gotta say I am feeling a bit nervous, as I will get the pathology results, speech assessment etc., all within the span of a couple of days, along with a more definite time frame for the start of chemo/rad.

I definitely need some goods news now, as I know problems will arise during phase 2.

I am eating normally, which is awesome, and back to work about 90%. I feel good, but went from sounding like the godfather, to Elmer Fudd (having trouble with C, G, R, S and T's), although everyone says they are shocked at how good I sound. I don't agree as I dictate stuff to my assistant, and abhor the sound of my own voice, but I am holding strong in the belief that it will get better. Preferably sooner rather than later....

Max, I expect your 2nd surgery is coming up soon - wishing you the best.

If I figure out how to post a picture, I will, I have a cool one that I think everyone will like. I'm a luddite, so not so bright on techno stuff. I have an IT guy at work for a reason...

We are the hardest on ourselves. Trust me probably do sound terrific. I orice my flaws as well, but others say they don't. Hugs! good luck, hopefully you'll get the post surgery all clear.

Ok, so met with the surgeon today.

Margins are 100% clear.

Pathology on the nodes revealed NO cancer. The PET may have been a false positive.

My surgeon has told me to meet with the radiation oncologist to determine whether I should have radiation or not (he is leaning toward not).

Meet with oncologist on Tuesday.

Not sure whether I can get excited or not...but regardless of whether I need further treatment, the news is awesome.

That's soo great!!!!

That is great news, TIna!

Hi Tina,

glad your recuperation is progressing

my excisional biopsy went well on monday, was at home the same day... a bit on a diet this week again as the tongue is sore but getting better.
having an appointment wednesday - hopefully they will please me with good results

GREAT NEWS!!!!!

Tina: Thrilled to hear that your margins were 100% clear and that there was no spread to the nodes!! Awesome news. Stay vigilent but be happy! Let us know what they say about radiation. (at one point in your posts I thought you had already had 30 - got confuddled!!)

Donna

Yeehaw Tina!!! Such awesome news!
Kathy

Amazing news Tina!

Great to hear positive margins and more importantly NO METASTASIS TO NODES!

I know, I have had a stupid grin on my face since Thursday.

Got a 2nd opinion from another ENT (who is not a surgeon), who said don't do rads with those results, for 2 reasons --- the fact that it will kick the sh*t out of me, and that it will lose efficiency if required in the future since I am higher risk for recurrence.

Last opinion will be the oncologist. Not sure how I can wait until Tuesday. This will be the longest 3 days of my life I think.

Max, good news for you too. Glad to hear you are doing well.

Thanks to everyone for your support. I'll keep you posted.

Tina, so glad you are clear. If the totally decide against it that's great! But please be diligent in watching neck nodes and get to know what normal for your mouth. So you can spot any immediate changes. hugs ! Good luck Tuesday!

Tina,

I'm doing the happy dance for/with you!!! I know how it goes with the s.e.g. :-) Congratulations on the great report.

Karen

Karen, we are shucking and jiving, at least for the next day and a half!

I'll keep you posted if the song ends, or goes on repeat...

Woo hoo....

Great news. I do not need radiation at this point. They will monitor me closely for any recurrance, but I am clear!!!!!!!

Such great news Tina. Keep the faith! Good Luck!

That's awesome!!
Kathy

Woot! Dance on!!!!