Well...Here's some facts.

I am in GREAT shape all things considering. However, I am also 60 + pounds overweight again. Looks like that ultimate diet plan I was on, the one with chemo & radiation, it (like all other fad diets), doesn't result in permanent weight loss

Next, I still have EXTREMELY BAD TINNITIS. 75% of the time I don't think about it nor actively "notice" it. Truth is, it is there 100% of the time and sometimes I can ignore it for 1 second, but ignoring it is like telling someone not to think about a blue elephant.

I have been getting (increasingly over the years), muscle spasms in the surgery/radiation areas. Some light twitches. Occasional cramp. But I am dealing with it.

I had ONE physical therapy appt and am told I am stupid for not continuing it. Stupid? Me.

What else, oh yeah, my thyroid was 100% toast!!! Don't forget boys and girls -- HAVE YOU DR CHECK YOUR THYROID.

Mine was virtually non-existent and we didn't find out for 8 months! I could have saved a fortune in triple-espressos.

Several of you on here told me to have it checked, but I think I kept forgetting, or was just too stubborn. Or stupid?

Update on saliva, food, tastes. Wow! I feel lucky. I have I would guesstimate, about 95% full salivary function. 90%+ food taste and all in all feel good.

What else? I can't open my mouth as much as I used to be able to. (Have somehow managed to cram LOTS of food in though)

I seem to have some short term memory issues, but that could even be diet, lifestyle related (did I mention I am turning 40 this March!!?? UUgh!)

I have pretty heavy duty heartburn but take meds for it. This, could also be related to obesity.

Here's a strange one. For over 7 months now. SEVEN MONTHS, I have had a persistent, Dry cough.

Of course I was out of my head crazy after week one. How do you think I felt after week 9???

Here's the deal. It ONLY ever (and always!) happens just as I am drifting off into twilight sleep, at that precipice where one drifts from consciousness into light sleep...

B-A-M !!!!!!

Cough. Cough!

Jerks me into full awaked-ness-ness in a religiously reliable spasm that Seth has grown particularly displeased about.

In general, it is EVERY single night. I have asked my local Onc about and the ENT specialists at UCSF. Their only answer was to get an X-ray to rule out lung cancer, I guess.

Had that about 3 months ago. Radiologist said ALL NORMAL.

Still worried though (do we ever get over the worry??). One of my employees went to the same radiologist for a sprained knee x-ray 6 weeks ago. Turns out he misread her knee film. It was fractured in 3 places! She missed the window of opportunity to get it treated and now will have a limp the rest of her life. Plus, the likely prospect of having metal pins installed in her knee. Yuk. (is it just me, or does anyone else smell the lawsuit?)

Well..I placed a whitty update on the survivor forum in case anyone is wondering how I could possibly have the nerve to post here and not even acknowledge the fact that I have been neglectful here on the boards.

I think that is about it for my list of complaints.

Overall, I feel good. Would I go through all the treatment again to save my life? YES. Would hate every minute of it. But it is worth it.

Congrats and thanks for sharing! Can't wait to share this with my mom, she has some of those same twitches/spasms.

I'll keep your mom in my thoughts. I wouldn't want to wait till December, that's for sure!

Donna

Michael,

Your only one year ahead of me and my diet is still working.

My thyroid crapped out 4 months post Tx and I have regular bloodwork done to track it. I still require a large Cafe con Leche in the morning to rev up my engine.

I also have memory lapses but I'm 20 years older than you so whose to say? I don't have any persistent cough.

I don't have any mouth related problems.

I also have pretty much back to normal taste although it's still not perfect like it was pre Tx.

I didn't require any surgery.

Hey but it's still better than the alternative and I have talked to and met some pretty amassing people on this site in the last 2 years.

You figured one PT treatment was enough? No wonder you have twitches and spasms. I have never had that problem. I even go back for a tuneup every couple of years if my neck starts feeling tight.

Hopefully you are doing religious dental care and see dentist every two months. You don't want your next diet to work because you are toothless.

Time to drop the weight again. Are they checking your TSH level? Your thyroid being out of whack can add pounds.

Glad to hear you are doing well.

Take care,
Eileen

Thanks for the support Eileen.

No, I figured I need need to be on PT for a while, but have been too stubborn (=lazy) to keep going.

I do go for dental cleanings every 2 or 3 months, and have been told I need a couple new filings (any major issue I should warm my cancer ignorant DDS about?)

Being a little nervous (=big chicken) I haven't scheduled the procedures yet.

I do get my TSH levels checked every 2 or 3 months, and have had to make adjustments to the meds as a result.

Has anyone ever heard of "natural" thyroid as a reliable alternative to the synthyroid? A Dr. guest suggested it and not sure if it's some homeopathic thing or what.

As far as the diet, I am very near electing for a surgical solution.

If you are taking meds for hyper-tension, one of them is notorious for producing persistent, dry cough.

My tastes are sparse, esp sweets, and esp since the removal of most of my toasted tongue, so the Cancer Diet is working for me.

Michael,

A word from the local dentist. You can't afford to postpone those fillings. Don't wait till you need a root canal.

No suggestions for any warnings for your dentist.

Jerry

except maybe nothing that disturbs the bone...

Thanks Jerry, that's a good point since I've been warned to avoid oral surgery, and a root canal sounds like something sorta surgical.

He has told me I'm his only patient with cancer, so I am little worried about him not knowing about the circulation, radiation issues.

PS: Pete, not taking ANYTHING except some antacids & synthyroid.

Root canals, (endodonics) are OK.... it's extractions that are the real bad guys. Any dental procedures of that type should be proceeded and followed by 02 dives to ensure good healing of radiated bone.

You may want to switch to a dentist that has more experience with OC patients. Check with your oncologist for a reference to one. That's what I did.

Good luck.

Hi Susan!

Great advice.

I had my pre-treatment wisdom tooth extractions done by a specialist at UCSF.

I may go back to him for the fillings, but frankly seems like overkill.

My "local" dentist is 30 minutes away. UCSF is 3 hours. :-) Not too many in between.

Michaelii

Three years. WOW. You may want to ask your UCSF specialist if he/she knows of any prothodontists with cancer expertise closer to you. As usual, Brian is correct that root canals are usually okay. (I've had 3 post TX and did not need any HBO, etc), but I was cautioned against any extractions. As for fillings, I stayed with the specialist as he is more aware of the need for extra care in dealing with my max nuked jaw.

Michaelii,

You asked about the "natural" thyroid meds and I have been on those in the past. I understand the thyroxin comes from pigs. Some people process it better but consistancy of dosage can be an issue or so my doc said. It isn't homeopathic just another source. Ultimately we didn't see the results I needed and we went back to synthroid.

Michael, I needed a root canal earlier this year -- My fairly young dentist and I both checked around and since a root canal only deals with the tooth and tissue (Ream it, clean it, pack it and back-fill), we found it to be OK.

Pulling the tooth would be a different story, I'm sure.

I'm still mostly doing liquids (in part because I still have six cases of Nutren 2.0, 500 cal/can and I'm waaay too frugal to get rid of them except down the gullet [and recycle the cans]) and also because I'm not yet adept at moving solids around my mouth to chew them. Also, I lost a lot of those taste buds that partially came back when they removed my tongue front. So that means I am getting all my vitamins without taking supplements.

Hey, be sure not to take the antacids less than a half-hour after or an hour or so before the synthroid (aka Levoxyl) because the calcium will destroy it.

Ideally synthroid should be taken first thing in the AM at least 30 minutes before consuming anything other than water. Hypo thyroid can lead to lack of energy, and if you are too tired to do things that burn calories that can impact weight. However since I know you own a place that has killer food..... your underactive thyroid might be being assisted by an overactive fork.

Oh my...I never had a lot of energy to begin with!! My GF is really going to be upset if I loose more get-up-and-go...Oh boy. I hope my thyroid is spared...it was hit...I know that much. I'll finish my txs 11-4-08. Every time I feel tired I'm going to blame the txs...If I can't sleep (like now) I'll also blame the txs...I'll have a lifetime of excuses to use..LOL.

What are the chances the thyroid will have problems? Does it usually become over or under active?

Hmmm, pig horomones eh Suess57...kinda poetic :-)

Sounds interesting and I'll ask about it.

Brian, I do take the synthyroid first thing BUT, with coffee (with cream :-P) so can never be sure if I am doing the right thing, but seem to have fairly stable readings.

The irony is, I would be at a healthier weight if I DID eat here, in our 5 star restaurant, but the 120 hour work weeks result instead in mostly processed and junk type foods which are bad for me for every reason, cancer and obesity just two of them.

I've been reading about the impact of excess weight on cancer as well.

Pete, what I did, was donated the Osmolean (?) to a local cancer resource charity...they put it to good use (the chemicals and corn starch CAN'T have been good to continue on), I got a tax write off and moved a mountain of flats out of my room. Something to think about when you are really ready to drop them.

I had a lot of trouble, and kinda still do, moving food around and my tongue was not cut up nearly as much as yours.

Still hurts when I try to articulate my tongue around to certain positions in my mouth. In fact, when I am tired my original "site" hurts a LOT, sometimes I need to pop a Tylenol for it.

I can also tell you Pete not to rush the solids, once I was ready I had NO TROUBLE (and still don't) eating despite the discomfort and pain.

Which, brings me to another question Brian...any ideas on the gastric bypass option and how it might impact any future treatments I might need in case of recurrence, increase in chances due to the surgery, etc etc.

By way Brian -- In case I never said so THANK YOU!

Hi there I am not Brian but have had a Gastric bypass done many yeard prior to the oc surgery the biggest problem I had with the surgery due to the gastric by pass was the nose feeding tube. But that is a personal issue with me and gaging...It may not bother you at all...Once they got the issue straighted out the feeding tube was fine...not sure exactly what the problem was but in recovery firecting it with the bypass and the stomach being smaller...
Brian will probably have more informed answer for you dear...but it was workable...

Dianne

I was told to take it first thing in the am with water and to not eat or drink anything for 1/2 hour. No limitations after that.

I don't know nor have I seen any statistics about how many OC radiation patients end up on thyroid meds and certainly it depends on where the rad is aimed but I will say a lot of people on this site over the last 2 years have required the meds. All that I know of have had their thyroid production limited or stopped which is called Hypothyroidism leading to the symptoms Brian mentioned and more. Post Tx I was weak and always tired which I attributed to my ordeal. Then I became very cold all the time and this was late summer, early fall in Florida so that's when I started asking questions.

Hi Dianne...Thanks for the info. I hadn't thought about it, but I guess it makes sense that they can't use a PEG tube for feeding if you've had the bypass.

I know it seems trivial, even to me, to be thinking about such a selfish and vain surgery in the face of all the challenges we've all had. I just feel so helpless about the weight issue and know it by itself has long term negative effects on my health.

Are you happy you did the bypass surgery overall Dianne?

Michael,
How much coffee do you drink a day? I dropped 10 excess lbs in college by drinking my coffee black, no sugar. Haven't drunk it any other way since.

As to synthroid, I was told by druggest to take it two hours before or 6 hours after anything with calcium or iron, so don't tkae with that multi-vitamin. Also told best to take first thing in am.

Take care,
Eileen

Goggled "thyroid issues after radiation" and this came up--I wasn't in the mood to do futher reading


Thyroid cancer (see Thyroid Cancer brochure)
Thyroid cancer may be found anywhere from 5 � 20 years after radiation treatment was given, although about 10 years after the treatment is the most common time.


http://www.thyroid.org/patients/patient_brochures/childhood.html


It usually happens to children (younger then 20 years old) exposed to radiation txs

Ray,

Now that's something I hadn't heard. I guess it's time to do some research and ask some questions. I guess I can be happy to be so "old". Brian? Any words of wisdom for us here?

Lani

Here's info on thyroid right from the OCF site:

http://www.oralcancerfoundation.org/facts/hypothyroidism.htm

"Using statistical models, researchers were able to project that 48% of the patients would experience hypothyroidism five years after treatment, with that number jumping to 67% eight years after treatment. The average time to development of hypothyroidism was 1.4 years, but ranged from .3 to 7.2 years. Importantly, there was no difference in risk for developing hypothyroidism between patients treated with radiation alone or those treated with radiation and chemotherapy. The only factor that could predict whether or not an individual would develop hypothyroidism was race: none of the African-American patients developed hypothyroidism."

I just today dropped off two cases of Osmolite 1.2 and five cases of Novartis 1.2 with the nurses where I had my radiation. They will get them to someone who isn't covered by Medicare or insurance.

I have found that if I mix two tbs of Nestles NesQuik in with the Nutren 2.0 (500 cal/can) it tastes OK, so the six cases I have won't go to waste.

I am not having trouble swallowing solid food so much as I am having trouble moving the food around in my mouth to chew and swallow it -- My free flap new tongue is anchored to the floor of my mouth all the way around the bottom, so it only sort of ripples...

Can't write them off because I don't think I actually paid anything for them (except shipping, come to think of it on the Osmo; it was free from another reformed 'user'), but I will take the mileage as charity expense.

Michaelii
I would try behavior modification before I underwent a major surgical procedure. You got through cancer treatments and that took some mental strength. After that I believe you can do anything that you set your mind to, including eating in a healthy and appropriate manner.

Thyroid cancers from radiation prominently occur in childhood radiation patients, not adults. Also if you are in the IMRT group, they do a pretty good job of missing it with the beam these days.

Radiation destroys the thyroid function, that means that you will go hypo thyroid not hyper thyroid.

Yo u

darnit! I wasn't even that worried about radiation induced cancer -- guess I had forgotten for a while about the correlation.

So, what are the "odds" since the 'roid is fried, that cancer will be knocking on the door again as a result of the burn?

Also, if the thyroid is toast, does the cancer incidence increase or decrease?

OK, now I need to have a drink of wine and watch some Dexter on DVD.

Some of you might recall my friend Tim from SF and Alaska. He had a "recurrence" after 14 years. I often presumed it could have been a byproduct of the radiation he had.

Radiation induced cancers in IMRT patients isn't a big risk. and it won't be in your thyroid. Even if it did occur there you can live without it with no real change in your life. The removal is a minor surgery if it went south. Cancer transformation is a matter of genetic mutation. Functioning or non functioning thyroid is a non issue. It is a cellular change and not related to function of the organ the cells are in.

There are many reasons for recurrence. Radiation is not one of them. That would cause a unique and second primary like osteosarcoma of the mandible.

Live your life, worry about recurrence less. You are not going to prevent it if it is in your future, so unnecessary worrying only lowers your immunity and screws up the rest of your life that could be spent thinking about positive things.

Thank you Brian. My spirits have been pretty upbeat - especially since my cancer-scare last month turned out to be nothing - and I just didn't need something new to start worrying about now. The mention of radiation-caused thyroid cancer was a new one to me and I'm so glad to hear that it's not really anything I need to think about.

Peace of mind is a wonderful thing.

Lani