tongue cancer (mother of two boys)

You poor thing! I can't imagine how difficult it must be to cope with tghis horrendous treatment while having to look after young children. I totally agree with Deb and others about getting a PEG fitted. My partner did not have one but he was very overweight when he started treatment and most of the treatment was directed to one side of his neck which means he may have had a relatively easy time of it ....'ha ha'. Even though he was able to swallow ready break and weetabix throughout, he felt so nauseous from chemo and radio that he didn't want to eat and was only taking in about 1300-1700 cals per day for about 4 weeks. He lost 2 stone during the 6.5 weeks of treatment. This made me incredibly anxious and I was constantly urging/nagging him to eat which caused quite a lot of friction although we still managed to laugh. It is terribly difficult seeing someone you love not able to eat and the fact that water made him puke meant he wasn't drinking as much as he should have been, although he found milk more manageable. A few patients seem to have had similar experiences with water.

As per energy levels and plans after treatment - He was definitely very tired for some time after and we did not really venture out and about for about 6 weeks after treatment ended. 12 weeks on, he seems very much back to normal and is eating just about everything except curries. Sleeping is a bit of a problem because of his dry mouth. Yesterday he was talking about how ill he felt at your stage in the treatment and how difficult it is to remember that now - just goes to show that although you have a way to go, you will recover and in a few months time this will probably seem like a bad dream.

I hope you can get someone to help with your children over the next few weeks or so and that you do get a PEG fitted.

Good luck we will all be thinking of you.
Cathy

Well all is good. 11 more radiation treatments to go. Still no PEG. I am eating the best I can. Had a virus last week so I had an entire day of not eating. But my dr is in aw of me. My neck is only red and most of the sores in my mouth are gone.

Hi mom and well done on still being able to eat. I had much the same experience as you through RT. Put on weight all the way through and dietician was impressed. Keep up the good work. Hagg.

Great news. Not long now and it will all be behind you. You're doing really well.
Onwards and upwards
Deborah

I actually have lost weight. About 16 pounds since Halloween. I was overweight to begin with. Not the best time to lose it but it needed off for me to be a healthier weight rather than over closer to the ideal weight now.

Radiation has been over for almost a week. I still have huge sores on my tongue. Dr says they should be gone soon. They are the only thing holding me back from eating normally. This darn mucus though is about gross. My tongue bleeds at night if I forget to keep my mouth shut. It ends up dry and sticks to the roof of my mouth they when I pull it away it is awful. I am a mouth breather my nature. I try to use moistening things but they have a nasty taste and make me want to get sick.

Hi!

I had the same mouth breathing problem (allergies last spring that clogged my nose and sinuses) and I was able to sleep using the Breathe-Right strips. Get the large ones even if you have a small nose - the larger ones wrap around better. They're such hokey looking things and I have no idea how or why they work, but they sure worked for me. Can't hurt to try them.

The healing process after rads is soooo sloooow but if you have a good prognosis it'll happen. Although I didn't experience a bleeding tongue (yikes!) I do remember peeling my tongue off the roof of my mouth in the early days after treatment and before the Strips.

We think that because treatment is over that we should be back to normal in a week or two but it doesn't work that way. I'm sixteen days away from my one year anniversary and I still can't eat thick bread crusts and I have to swallow them with water or some other beverage to get down. I feel so incredibly lucky to have gone through this relatively unscathed that these are very minor inconveniences.

This is a hideous disease that we all hope that, like Haag, we can someday say "Eleven years and still kicking it." That's been my mantra with the appropriate weeks/months substituted for years. In sixteen more days I can change it to "One year and still kicking it." I can't wait to celebrate!

Hang in there Mom; it'll all happen. Your new normal is yet to be realized.

Mimi

good Morning Mimi,
I, too, use the breath right strips and find them very effective but very costly. I have to pay $10
for a box of 10,at approaching $400 per year it becomes quite an item. Particularly annoying when the manufacturing cost for a box of 10 will be measured in cents.
I reuse the strips with the aid of good quality double sided sticky tape.
I would be interested to know what you have to pay for a box of 10 on your side of the pond
Keep Smiling
John

Hi John,

I checked a large drugstore chain's website (Walgreen's) for standard prices. They charge $14.00 (13.99) for a package of thirty for the type I use.

Breathe Right Nasal Strips

I see that they're being sold on eBay at terrific prices and can be mailed internationally. The sellers have good feedback but I'm always a little skeptical about buying health-related items, even over-the-counter items, on the internet from an individual rather than a store or pharmacy. That's just me though.

eBay Example

Here's to good breathing!

Mimi

Mimi,

Thank you for all your thoughts and info. I have began to eat normal slowly. I am eating scrambled eggs again, ate half a hamburger for lunch and some vegetable soup. I have found I do have to drink a lot. I did have to put alot of tarter sauce on my sandwich due to the bun being so dry. I have lost a total of 30 pounds according to the doc. But it was a bonus to get it off I would never have been able to do it alone. So now I am not concedered overweight like I was I actually look healthy for all I have been through. I go back to work the 14th of April taking a week of vacation after the dr approval date.

Congratulations! It sounds as if you are doing well attempting a burger. I hope you manage to get a vacation in before you go back to work and that you enjoy the bonus of being lighter as much as my partner is.

Cathy

Has anyone had this problem. I ate a BLT on friday and since my mouth has been killing me! my entire mouth is sore, my tongue feels raw but dr says it looks good. She thinks I need to stick with bland food.

hi mom
i would think the tomato in the blt has caused this soreness in your mouth,your dr is right bland food for now.i am 2 years out and there are still some foods i cannot tolerate without getting a very sore mouth.well done for being able to eat as it can take some of us a good 18 months to be able to do so.good luck.love shirl xxx

Hi Mom

Did you have it on toasted bread? That can be like chewing on a scouring pad. After 4 years I still have trouble with really soft bread--it sticks to the roof of my mouth, my flap isn't very effective at moving it, so I have to leave the table and push the bread loose with with my finger.

Hope you're having a good day!

Julia

Hi Mom.I had RT in Nov 2007,so getting on for 16 months ago and there is still alot of food I cannot eat. I would agree it was probably the tomato that made your mounth sore as that still affects my tongue even now. I can eat tinned tomatoes no problem as long as I have sweetener on them,which seems to kill the acidity. I still can't eat fruit,anything hot or spicy is completely out of bounds,pizzas which I loved,again its the tomato,curries are a thing of the past. I went for a chinese meal with work,went for a simple chicken and pineapple disk but no,couldn't eat it. I would give anything to be able to go out for a meal,macdonalds,curry without having a major panic attack wondering what I can order.I realise now that I can't do this anymore.It wears me down sometimes but its something I'm going to have to live with.....plus plenty of water just to get it down with.Its hard isn't it?

This is so hard. I was a very wide variety eater. We ate alot of spicy food before. I would love to get some fruit in. Fruit is my favorite thing as it gets warm weather. Since my mouth is sore again I am losing more weight. I go back to work two weeks from today and I am wondering what in the world I will be packing for lunch? I used to back a sandwich and chips and some fruit. That will not be the case. This does stink I am so inconvienced by this awful monster. That is probably why I was overweight before because I ate everything. Now I eat almost nothing. My oldest wants popcorn so bad but I can't eat it and no sense in making him an entire bag! I am moving next week I am about insane I think but the house is across the street from my babysitter and that will relieve some of my stress I had before I was taken off work.

Hi! All,
EATING? Yes! one of the most important enjoyments of my life OH to be able to chew into a BBQ Steak or Lamb Chop BUT that just doesn'y seem to be a thing that is on my agender. Last night Deb cooked up a "Pork Medallion" with vegies (Oh Yum), things were going fine until about 1300hrs when I started to feel a touch Sickly, so of to the loo and there I made love to the pan and brought most if not all of the meal up. It seems that the only meat that I can swallow is Chicken & Fish as the fibres don't break down in my system. Tomatoes Deb peels for me as this seems to help, Pineapple is a no - no and same with most other fruit, However I will try everything stuck in front of me and I will eat it will gusto, so just eat everthing that you see and what stays down is good what comes up means you can save money for those foods from your shopping list.
Keep on a eating gals & guys.
Love Trev

Trev,

I don't post very often but I do follow you and Debs posts with great admiration.

You make me laugh Trev with your honesty and straight talking.

Keep going

Ken

Back to work tomorrow, wish me luck!

Good luck at work. I am sure it will soon feel like you've never been away!

Take Care
Mum
x

Good luck motb!

Let us know how it goes if you have enough energy after your first day back.

Mimi

Great that you feel well enough to go back to work! Hope it all goes well. I remember my first day back after 6 months off - felt quite nervous but it was really good to see everyone. Didn't manage a whole day to start with, though!

Best of luck
Love
Gwyn

First day back went pretty well! I was tired by the end of the day though!

Got a question for you all I really don't have much mucus anymore but my mouth tastes awful like cardboard. And I keep gagging. I also keep getting light headed. My family says I need to get my blood sugar checked.

Hi Mom

Considering that you've had rt and all that fun stuff, you might also have a thyroid check.

Went to doc today she said bp is low pulse is fast. She believes I am dehydrated. If still feel this bad in few days then we will do blood work.

Hi motb, well done on the results of your tests. I'm really chuffed for you. Start counting and enjoy the glory of being a serious ass kicker . Hagg.

Fantastic news! Congratulations!

quote:

I was just diagnosed on November 14th (2008). I am 30yr old mother of two boys. I have never smoked or used tobacco.My cancer is on the left side of my tongue and one lymph node. I am awaiting my pet scan and results to see if surgery is completely necessary or if I will just be doing radiation. I am really scared especially because of my job. I talk on the phone so surgery may have me looking for a new career. I have been with my company for 11 1/2 years. Any advise is welcome.

Hello motb

You have come a long way! Congrats.
Hope the speech is okay.

Best wishes
Vinod

Hi MOTB,
I am really very happy for you. You have fought well ( against me as well!!!).You have the right spirit and you deserve to be the winner that you have become over this period of time.
Take care,
Ananth

Hi there

What great news - so pleased for you. Good luck with the eating!

Best wishes

Gwyn

I have sent a message to the new mom with thyroid cancer I believe.

I thank you all for your well wishes!

My heart goes out to Paul and Bell !
I am also thinking of Trev and Deb! I tell my husband of the success stories I read and the sad stories I read and he just looks at me. He is a very quite man his family didn't express their feelings alot. But I do plan on paying it forward. There is not a lot of oral cancer events or anything in my area. Everyone I hear who talks of bumps or lumps in their mouth I immediately tell them go to the dr or dentist. I also tell anyone who is concerned with moles or marks to go to dr or dermatologist which my husband has issues with a red nose year round and I am on him everday. I tell people don't ever say it won't happen to me. I was the least likely in my family to ever think of cancer also the only child of three who doesn't smoke. Which my brother and sister both thought they would get oral cancer before I would since they smoke so heavily. But I tell people you just never know so always pay attention to your body. The only event I know of here in my area is the Relay for Life which is a marathon and I am not a runner or walker in long strides yet. I have to get my strength up still.

As far as my speech goes it is about the same as before. I so sound a tad different but S's are the weak point. But no one at my work is complaining yet. I have been back now for 4 weeks and it is going pretty smooth.

Thanks to you all and I will keep posting on the site.

Pam

Well I now know why I am light headed. I am anemic my blood is so low that I am getting a transfusion tomorrow!

Thank goodness it was recognized and controllable! Good luck with the transfusion - let it know if it works.

Mimi

hemotologist decided no transfusion am now taking iron supplement 325 mg 3 times a day.

have been following your posts.... glad that you need not go for transfusion........

me too ..you have been through quite enough

Thought I would give a quick update since everyone but me is asleep in my house!

Doing pretty good, blood count is higher had to have a D & C part of my low blood situation. That all came back fine. Been working full time, no time for much else other than work and home spend time with family. Having my every 2 month visits to ENT and Oncologist. Ent very happy with everything, See oncologist in 2 weeks. We will see what she has to say about my weight again. Total weight loss at last check was 47 pounds. People say I look good but I think I look to thin but I weigh what I should for my height. We shall see.

Oh forgot to mention this I have a girlfriend of mine I have none since elementary school she is 30 and just diagnosed with breast cancer. She is going for her second Chemotherapy next week. I feel for her she shaved her head so she didn't have to watch it fall out! I just let the back of mine fall out, from the radio exit point but it is starting to grow back finally! I have offered my friend anything I can do for her but she is not requesting anything at all, I keep giving her info and advise as she asks questions.

MOTB,

I had breast cancer a few years ago and am in remission. I found this website/message board a lifesaver. Please recommend it to your friend if she hasn't been led to it yet.

Breast Cancer Website

Best of luck to both of you.

Mimi