I just discovered your forum and having read some accounts here, I guess I'm pretty lucky. I'm a 60 yr old man and live in Chico Ca., about 100 miles north of Sacramento. I'm a public transit driver and, for 19 years, have been married to a wonderful woman, Linda. Back in nov, 07, just before a planned 2 week trip to Puerto Vallarta, I discovered a lump on the right side of my neck. Well, I really wanted to go to Mexico so I didn't say anything to my wife, who is an RN. I should have known better as, shortly into our vacation, she noticed it and realized right away it was probably cancer, so it was a dark cloud hanging over our dream vacation. When we I got I immediately made an appointment with my doc, who sent me to an ENT doc who did a needle biopsy. Yes, it was a malignancy in my lymph gland. It took several my tests, including biopsys of sveral areas of the throat, to pinpoint the source on my right tonsil. The reason I say I'm one of the lucky ones is that I didn't have to have surgery. 7 weeks of daily radiation treatments (just loved that mesh mask they fitted me with) and weekly chemo treatments and just a week ago I got the results of the latest tests and I am cancer free.
Now, I am told that my taste will come back at some time (so far only my sweet toothe has returned, I can eat ice cream, jello, stuff like that but most food still tastes terrible) but my salivary glands may never be right. It's a real shame because I love food, especially in Mexico, and I would like to think that someday I will be able to enjoy eating somewhat normally. I've been using Biotene gel and toothepaste, which helps somewhat except that as soon as I eat or drink something it washes it away. How have others coped with this? Can you really enjoy a decent meal? After how much time. I know that may sound like a petty concern given that I am alive and cancer free (I just can't say that enough, lol) but it is a quality of life issue to me and I just would like to hear how you are all coping. Thanks, and I look forward to future visits to this forum.
DavidR.

This message has been edited. Last edited by: DavidR,

Hi David
Welcome, welcome! And congratulations on your cancer-free (did I get that right ~ CANCER-FREE!) status. What a great feeling it must be for you and yours.
I can't speak from personal experience however even with all of my husband, Trevors' woes, the lack of taste and saliva is his biggest distress. Everyone's experience is different and you hear lots of different stories (once they all wake up, that is ~ time difference is a bit of an issue!)from others on the forum ranging from full-on taste, to little. I hope you get a good result.
Good luck and keep in touch with the many friends you will find on the MCF.
Love from Down Under
Deborah

Hi! David,
OH! how fantastic "CANCER FREE" and you are worried about a couple of side effects, This site is a great place to ask for advice and for comfort.
I finished my R/T & Chemo Treatment on the 13th of September last year, at the time of my treatment the clinical staff told me that the taste buds would return to work in a few weeks, however the Saliva was lost for good (Bummer Dude), anyway I put up with my food going into a PEG and after 31/2 months I started eating normally and was disgruntlled over the fact that I couldn't taste what I was eating and only the memory of the taste of Garlic Prawns on the first night kept me happy BUT after seeing my R/T Specialist, he informed me that it would be 2 or more years before the buds would resume their job of taste(Double Bummer), however I did find that my taste for sweet things has partially returned and not being a sweet tooth I now have sugar on my cereal and a couple of sweet biscuits under my weetbix to get some taste, quadrupple shot coffee's are an improvement and a Smokey BBQ Sauce helps but the rest NADA. Saliva the thing we take for granted was sooo distressing at the first BUT now I have accepted the loss and get by with plenty to drink and my meals consisting of moist ingredients and the BBQ sauce or Sweet Soy, at night was the worst until I came across "AQUAE Mouth Spray" (www.hamiltonlabs.com.au) and now when I get a dry mouth or throat I give it a couple of sprays and she's apples. Some nights are worst than others but I have learnt to live with it, I don't use fancy toothpastes or gels as the regular ones are doing the same thing.
I hope that this bit of advice is a help and if you read my posts then you will see that we have a bit in common(I don't mean that we are "Common"), so take care and best of luck.
Keep in touch
TREV

Hi David, well done on being cancer free. It's a good feeling isnt it. My sense of taste and dry mouth aren't too bad. The taste isn't brilliant but there isn't much I cant eat or drink. The only thing that really plays my mouth up is junk food like crisps and stuff. That's a downer but such is.
I use loads of normal chewing gum to stimulate saliva a bit, and drink a lot of water. At weekends I drink vodka, wine or Guiness, even though it doesn't taste of much .

Hi David and welcome,

It's great to hear those words - CANCER FREE! I heard them on my last appoinment too.

Very similar to you - lump on neck - tumor in left tonsil BUT mine was only found after the op to remove lymph nodes and tonsil. 7 weeks of rt and weekly chemo. All finished 22 May 2008.

My taste isn't too bad - I am eating tomato soup and bread as I type! I can now do bread but only soaked in soup. Sweet things are ood but sometimes I loose the taste of them - I still eat it though. I'm hoping to get rid of my peg really soon though its useful for taking my horrible medicne (I can definatly taste them!). I discovered chinese noodles this week so went out for dinner thursday and got takeaway yesterday! I eat really small portions though.

Hope this is of some help David.

When did your treatmernt stop?

Love Chloex

Hi David,
I thought it over a lot of times before I decided to send you this post as one of my last trips ( rather my last trip ) was to Mexico and was diagnosd with cancer in a few days on my return. You are really lucky to have got away - but a lot of us have not been as lucky. Most have had it so severe that its doubtful if their taste buds will ever be totally back or not - beside the other problems that come with it.
May I request you to read my story - on the main page under survivors click on 'Ananth's Story" and you will realise why I was very hesitant on posting this as what I am going through is not the most pleasent of things.
Take care, amigo.
Ananth

Welcome to the club no one wants to join. Cancer free is great news. I didn't have a severe bout of tongue cancer, but I'm almost absolutely certain that the tastebuds on the left side of my tongue will never be back--they were surgically removed (sorry, Ananth, I couldn't resist).

May your good fortune continue.

Julia

Thank you, new friends. Yes, Deborah, you got that right, CANCER FREE, there, I said it again. Trev, I don't know if Aquae is available here in Calif. but I'll be on the look out for. I tried the Biotene spray and it's good for short term relief. PK, My treatment ended Mrch 20, 2008. I had a pet scan in june that showed the lymph tumor had shrunk from 4.5cm to 11mm, which the chemo and radiation doc both were very optimistic. Then I had a pet scan at the beginning of this month. Good news/ bad news. The neck was clear but something showed up in the right lung that looked bad. It could be nothing to worry about or it could be a new lung cancer, which would require surgical remove, or it could be squamous cells from the neck cancer which would also require surgery PLUS chemo. So soon after having cancer, I fully expected it to be the latter and was braced for it. Had a needle biopsy done and after 3 days sweating it out got the word that it was benign. About 16 tons lifted off my shoulders and my wife and I cried all over each other.
Ananth, I did read your story and admire you very much. Thank you for sharing. And thank you all for your kind words of welcome and advice.

David, after i finished my radiation and several check-ups later, the doc said the tumor is gone. i don't see any cancer. my response was "does that mean I am good to go", response, no you still have a statistical survival rate of 80% for 5 years. if you don't get cancer again within the 5 years we consider you cured.

i think on this U.K. board the survival rate is projected at 50%.

Pete, yes, I am aware of the statistics and yet, oddly enough, I choose to celebrate the fact that 'today' I am cancer free. Thank you.

Great news David. Keep vigilent however. Don't want to bring you down, but want you to remain on guard for recurrence. (Just had my third surgery in Aug).

"Today" you are cancer free and I celebrate with you!!!

God Bless,

Bob (pembo)

David,

I had another two-month checkup last Friday and I too was pronounced cancer-free by my radiation oncologist. He did only a cursory check though: that nasty thing through the nose and a visual check of my mouth. I have my first ENT appt at the end of this month with the doc that diagnosed me back in January, 2008. I'm eager to see him again as he's the one that made it all happen quickly and the one I feel I owe my life to although I've seen him only once. I hope he sends me through all the scans and tests so that I can feel I'm truly cancer-free. It's nice to hear it from the rad onc but I'd like a little more info, ya' know? I wonder if they wait until the 6 or 12 month point before they schedule those tests. Will have to ask him.

A story: some years ago I was moving from one California city to another. I asked my ob/gyn doc to refer me to an ob/gyn in my new city. He consulted a directory of some sort and immediately said, "Oh! Here's your guy! Dan Nnnn - he was number one in our med school graduating class." Now I wonder - who sees the bottom doc in the graduating class? How do we have access to this info?

BTW, I'm in Sacramento. My treatment was at the Sutter Cancer Center this time around and Mercy General for breast cancer in 2005-6. Both places were wonderful but seeing the children with cancer at Sutter was heartbreaking.

I'm a lucky one. Cancer caught early, good insurance, good docs, etc. I feel great and have very few side effects. I still have some fatigue from rads although the last treatment was on April 4, 2008. My daughter says I'm just getting old. Sigh.

Jimboy's Tacos has a special burrito bowl on sale now and I ordered one the other day. It was laced with jalapeños. Yikes! You can't just separate them from the rest of the ingredients as they permeate everything they touch. I wasn't good with jalapeños even before this.

Yes, I'm vigilant about recurrence and now know how to work the system a little better. We'll die of something some day...might even be this. It's life. I've told my daughter that most likely I'll die of cancer (it's rampant on my Dad's side of the family) but not this time around, that's for damn sure!

Take care,

Mimi

Mimi, great attitude. That's just what it takes to get through this. We're practically next door neighbors in this global community. My wife, Linda, who is an RN, used to work at Sutter Home Health in Marysville.
My experience with the post treatment tests has been that 3 months after, I had a pet scan which showed the tumor shrinking significantly and then, 3 months after that the pet scan that showed it GONE. Now I am scheduled for another pet scan in 3 months and after that it's every 6 months.
Hope good news keeps on coming your way.
David.

Hi David,

Really good news. I am so glad you posted your message.

I was diagnosed with throat cancer on the 1st April 2008. Had radiotherapy treatment during June and July 2008 in St Luke's hospital, Dublin, Ireland. Had first check up on the 1st September 2008 which was very short but included the worm camera up my nose. The consultant then told me that the treatment had worked and the cancer had gone.

I am very happy, still in shock and also still have a part of me which questions the situation. After reading this discussion it really confirms to me that yes I am very lucky for today but the journey is not over yet. Next appointment is in two months time and it will be five years before I can get the real all clear.

I am determined to get on with my life and compared to others that I have met I know I am a very lucky man. I am currently trying to get back to work. I should be having an interview next week which will be followed up with a medical with the new company GP. Does anyone have any experience of this? What do I say about my cancer and treatment?

regards

Ken

PS. Wanted to thank everyone on site for sharing experience and information

Hello Ken
Congratulations! What great news for you. I felt very happy when I read your post.
I wish you well and best of luck with your new job and continued good health
Onwards and upwards.
Cheers
Deborah