I gave up in 2001 after a thirty year habit.I started again the week after Robs terminal diagnosis.Now i am as addicted as i was eight years ago.60 a day and wheezing like a bellows.I will give up but how and when i don't know,and NO ONE knows better than i do why i should.

Hi beautiful,

Now I am going to come with a comptlete frontal attack. You mean to say you gave up smokinmg and have actually restarted again. After all that you have seen around you - you have not understood what those sticks can do?
It is upto you to give up when you decide but as a friend and a really good one at that - I would say stop it right away. Though its not my birthday or anything I feel you could give me one gift of quitting smoking.
Lots of love,xxx and hugs,
Ananth

At the risk of sounding boring, try Alan Carr. I enjoyed smoking, don't know if the people round me felt the same as they were subjected to me puffing away like a train whilst I was mine hostess in my hotel. On the way to the Alan Carr session I left my Dunhill International in the car to smoke on the way back and took some B & H to throw in the sack as I understood was required at the end of the session. Guess what, even though I lent over several times to take one, I really didn't want it. If I can stop and there was no one more addicted than me, anyone can. It cost you what you would pay for your fags for a month. My reason for stopping was purely vanity, I had had dermabrassion round my mouth to erase the wrinkles caused by smoking and didn't want to repeat the process. So now you know!

Dear Angie,
I am in total agreement in you as I think I spent more money on the treatment rather then on the sticks. Its however one looks at the consequences - some feel the cancer cannot hurt them and carry on smoking (I am a example of the same and am not very or totally proud of it!). Its only when the things start going bad one decides on giving up and it is a absolute sudden give up and not tapered. If the cancer can give you such a scare - why smoke? and even if you do smoke why dont you just pick up that packet and bein them? Why must one wait to undestand the consequences?
Lots of love and hugs,
Ananth

been a little over 4 months since i completed my IMRT. i think my saliva glands are pretty much okay, but i am still hoarse and lose my voice at times. past week doc told me that the radiation makes vocal cords hard and eventually they will soften which will allow my voice to change to more normal "maybe" ....

and then another positive note is on the lower part of my neck where i had lost about 1.5 inches of hair it has started coming back.... not fuzz, but real hair.... doc originally looked at my chart and said hair should grow back but on another visit about 2 months later and no hair he said it wasn't going to come back.... so it has been a pleasant surprise....had someone comment once about how a barber really butchered me on my hair cut..... i just laughed and said yeah, and kept on trucking....

Pete,

Thanks so much for sharing your story. I start IMRT on Valentine's Day (ironic, no?) and had no problems with the simulation, mask fitting, scans, etc., although I nearly worried myself sick beforehand.

Not having to go through surgery and/or chemo will make it much easier and it sounds as if IMRT rads are also easier on the throat and surrounding area.

I was very impressed about how you were able to continue going to karate and to football games despite the fatigue. Were you able to drive yourself to rads?

My rad onc game me a FAQ sheet that suggests Tylenol for pain which is kind of a laugh as I'm already taking one hydrocodone per day for ear pain (prescribed by my ENT). I can't imagine the pain lessening as rads begin. Any suggestions?

You're an amazing guy - I wish you well.

Hi Mimi

First of all good luck on 14 Feb.

My R/T and chemo started on 14 Feb 2007.

First two week I was OK able to drive and eat, drink etc.
In the third week it really kicked in and I ended up in hospital.
My big mistake was to not take the pain killers.
The only thing I can say is take the pain killer as prescribed and if the pain is not under control, speak to your dr.
Quite a few of us (if not most) ended up taking oral morphine, for pain control it was the best.

A year on and I don't take any pain killers and I can eat normal, drink nearly back to my old self, (I am sure you will be too).

Good luck and take care.

Regards


Tony

Kathleen,

Thanks for your reply. When I saw your start date and realized it was exactly one year to the day earlier than mine, I thought you might be the perfect person to direct questions to. I hope you don't mind - we just might be twins separated at birth.

When you said you had to go to hospital after the second week, do you mind telling me what happened?

As I posted, I don't have to go through surgery or chemo, but may have Erbitux at some point; my doc said he'll wait until he sees how rads work for me.

I vacillate between 'this is doable and it will be tough but all will be OK,' and 'Holy Crap! I'll never be able to speak, taste, get out of bed or pet kittens again.' I guess it's all an individual crapshooot and I'll just have to wait to see what happens.

I had an appt with my primary doc today just to get a few things taken care of before I go over to the dark side: a shingles vaccination (recommended for those who've had chicken pox and have impaired immune systems [which I'll have soon] and a blood pressure check [seems to be elevated since this diagnosis]}. He's a sweetheart but totally unknowledgeable about oral cancer. I educated him with my sparse knowledge and I think I saw him cringe.

Made an appt with my dentist to monitor some mouth sores, nothing that are cancerous but that I've had off and on since the chemo for breast cancer. This guy will take care of me well. He's one of those medical geeks that isn't totally likeable, but terrifically knowledgeable.

For the last few weeks and until next Wednesday, everyone I've ever known wants to take me out for lunch or dinner or shopping. I have this feeling that they all think they're saying Goodbye to me, but I'm not going anywhere! The social events all stop on the 14th....

It's odd to reassure people that I'll be OK when I really don't know whether I will be or not. Why do I feel that I have to make them feel good about what might happen to me? Why do I say, "Ah, it's nothing, I'll be just fine?" Liar, liar, pants on fire!

Ah, the human condition.

Deep down though, I feel I'll make it through this OK, with a bunch of problems along the way, but in due time, as with Kathleen, I'll be OK. OK is...just Okay, but better than the alternative.

Hello Mimi

Better explain that I am a He not a She, my wonderful wife Kathleen started the posting when I was under going the “treatment” we just kept her name (for good luck reasons)when posting on forum.

You asked how I ended up in hospital; well I was pigged headed and did not want to take any pain killers, a really stupid thing to do. I was fine for the first two nearly three weeks and then the treatment just basically pole axed me, it happened so fast I became dehydrated.

The R/T kind of creeps up on you one day you are fine and the next day you are not, if I had done as I was told I might have not ended up in hospital.

So pain killer are important, so is eating, eat as much as you like, ice cream, avocados, mash potato, try keep the weight on during the R/T drink fluids, water, green tea. Kathy has just yelled out don’t forget the mouth wash, (bicarb & salt solution in water) the formula is on the site (can’t remember still suffering from chemo brain!!).

Biotene make a fantastic tooth paste, gel and mouth wash really worth checking into helps when you start getting a dry mouth.

Your prognosis sound good, no lymph nodes, no surgery which is great news.
You are doing all the right things seeing the dentist and a good dr to back you up.

What else can I say oh yes, I have just ate a really hot chill: so there you go and it tasted
wonderful would never thought that would be possible a year ago.

The good news is you will get thru the treatment and sound like you have a great group of people supporting you listen to your body and accept help and don’t be like me (stupid).

Both Kathy and I will be thinking about you next week on Valentines Day.

Keep posting, all of us on this forum are only a mouse click away

Regards

Tony and Kathy

A great post Tony that has made me feel a bit weepy. Weepy for your great progress and weepy because no-one should have to go through this bitch of a thing called cancer. Congratulations to both you and Kathy.
Mimi
I/we will also be thinking of you. This lead up bit can be just as bad as the actual r/t effects. The unknown tends to have your brain skipping and skimming all over the shop. Take each day as it comes. As Tony says, one day you will be fine and the next r/t greets you with a bit of a wallop. As you say, you WILL get through it but there may be some rough patches in the road ahead.
Keep smiling and soak up the best wishes of us all, over the miles.
Onwards and upwards .........
Love from Down Under
Deborah
xx

Yes Mimi thanks for your kind comments..... i was kind of an exceptional case. I did drive myself, but was lucky and was only about 15 minutes away. Football games were another story though. UT games were about 130 miles RT (round trip) but my saturday karate monthly all day workouts were 350 miles RT (only had 2) and locally i would go 2 to 3 nights a week.

Just make sure that you let your doc be aware of any problems or side effects. If you read my earlier posts, you learned i had an allergic reaction to some shot which was to save my salivary glands. that was no fun and was the worst part of my treatment.

I think your body will tell you what you can do.....and what you can't do..... and like everyone else talks about.... eat as much as you can, to maintain your weight..... and get as much rest as you can....

Guess one of the worst things about the treatments was the fact that i was "tied down" and couldn't plan on anything that would make me unavailable for a treatment which were priortiy #1.

Hope you do well in your treatments and you come through with flying colors......

And like others have stated, if you have a question or a problem comes up, throw it to this thread.... lots of experience in this club we belong to and suggestions are abound.... you get more info here that you can quiz your doc on.....

I am sure you will come through your treatment with flying colours but as seems to have happened to so many people, just when you think you are doing so well it just whacks you off your feet and suddenly you can't eat or swallow and the big shock of all that phlegm. Without this site we would not have been forewarned and it would have come as a tremendous shock making everything seem insurmountable. From the experience of everyone here you know you will get through and things will get better. As has been said many times before on this site, sometimes the treatment seems worse that the illness but it has to be worth it in the end.

Good luck on 14th.

Mimi,
I think Tony sums it up nicely...
I was also a stubborn moo and it did me no good at all.
Don't tell fibs to your nutritionist as i did - and don't be afraid to ask for help - as i did. The team around are there to help you.

Yep - it's not fun, it's hard going and you come out of it with lots to remind you of what went on... BUT... Life goes on afterwards and you CAN have a happy contented life afterwards. It's a new kind of normal you'll have to get used to. Not long to go now!

Okay folks, it has now been a little over 5 months since i finished IMRT and had my visit with my DOC today (radiologist). everything looked good. after the doc just about pulled my tongue out of my mouth and wants me to say eh, i asked him if during his medical training if the students practiced on each other.... he laughed and said no, only on patients. i told him that i am on a chat site in which we discuss that the only people who know what we go through are the ones who have gone through it themselves. sure the doc knows what is going on, but he doesn't know what it is like to be laying on that table with that machine just whirling away and we lay there hoping that the machine is getting it right... and what happens if it is not. or have someone pulling on his tongue....

today i asked the doc how much radiation i actually got. he responded 70 gray and 35 fractions. doesn't mean anything to me & i didn't want to take up more of his time. however, he did say that i do not need to worry about any diagnostic x-rays which i might need sometime in the future.

also told me to avoid any dental work if i could, especially around my lower jaw. also told me to have my dentist call him and he could tell him exactly how much radiation any particular tooth in my head received.....

i told him my story about a nurses aide i had talked with who lost her front teeth and the rest of her teeth have been shattered (cracked) from the radiation she had because her health plan would not pay for one of those mouth protectors. he stopped dead in his tracks and told me that is one thing that is really rough about being a doc when you know the consequences to the patient when someone decides they are going to save some money..... he was quite compassionate at this point.... where usually he is more matter of fact type guy.....

i also asked him about my voice when tends to run out at times or crackles.... he said yes, the radiation is still work and told me it could go on for years.... and don't plan to make any long presentations.....

i asked him again about neck exercises and he told me at least 4 or 5 times a day explaining that the radiation is still causing scar tissue to build up on my neck and if i don't do exercise i could end of with a stiff-like neck.

i think i have presented a decent translation of my visit and discussion with my doc, but as always.... check with your own doc.... i just like to put some of my experiences out for others who might wonder what is coming down the road.....

good luck to everyone.....

just googled & figure the 35 fractions are the 35 treatments i received & in prostate cancer the 70 gy is most common dose given in external beam radiotherapy. gy is the abbreviation for Gray given after British radiation physicist Louis Harold Gray

later, pete

Glad everything went ok. Never thought to ask about radiation levels, guess it is just putting a label on everything, which isn't really necessary I suppose. Bill only had 20 sessions but every time we see which ever consultant, they look at his notes and make noises as if he he had very high doses which always puzzles me when so many on here with a lesser dx seem to have had more sessions. I might ask next time we go. Another think I would like to find out about, there seems to be a very high incidence of H & N cancer in the area we live in, I wonder why?