Hi. I am 47 yrs old and I was diagnosed with SCC on 12/15/09 after having a lump removed from the right side of my neck on 12/10/09. PET scan showed occult primary. Subsequent surgery on 12/29 revealed primary in right tonsil - tonsils were removed. I am now healing from the tonsilectomy and scheduled for PEG surgery 1/29/10. I have a dental exam on Monday and if I get the all-clear, will probably start treatment early February.

I have read many blogs, performed hundreds of google searches, and have an idea of what to expect, although I realize experiences are different for each cancer patient. I am very scared, dazed and feel like I'm waiting for 'the other shoe to drop.' However, as a recovering alcholic, sober 17 years, I am prepared to do whatever is necessary to battle this thing! My husband of 25 years and my parents and close friends are rallying to my support so, despite the cancer, I still feel as though I am very blessed. Any advice on concurrent cisplatin/radiation is most welcome. As I stated earlier, as a recovering alcholic and member of AA, I know how powerful communication from those who traveled the same road is. Thanks for any help, advice, or encouragement you can provide. I am going to need you all so much in the coming months!

Chris..

Welcome to OCF. You have really provided yourself a great place of comfort and information here.

My biggest advise is to continue to read and glean all the information available here, both on these forums and thru the main website pages.

Also make sure to have your hubby onboard with the information that he needs to be a good caregiver. You will probably reach a point during treatment that will require him to track all of your care...you will most likely not feel like or be able to control your nutrition, hydration (hugely important,)pain meds, all of the information coming from you physicians, etc.

Again, welcome aboard this not so wonderful train and good luck in the coming weeks.

Deb

Chris,

FYI U Penn is one of the best facilities in the country for oral cancer treatment. I got my second opinion from them and I'm in Michigan. If you have a chance check in with them.

Also. Eat Eat Eat. you are going to be facing radiation treatment and it will be hard eating later. Take this chance to get as much additional weight on you as possible.

Kelly

Thanks, Kelly and Deb, for your replies. I am still recovering from the tonsilectomy/biopsy but am trying to eat as much as possible! I'm 5'6" and weight 130 lbs, so I know weight management is going to be an issue with me since I can't afford to loose too much weight.

Hubby is on board as are both my parents; my Mom and Dad are both retired and live only 11 miles from my house, so while hubby is at work, they should be able to care for me when I get to that point. They have come to all of my appointments so far, I hate putting them through this, but they want to help and I know I am going to need them BIG TIME. I guess you never outgrow needing your Mommy, eh?! Thanks again, I'll let you know how I'm doing.

Chris

Chris,

Where are you being treated? I treated at Fox Chase Cancer Center in Philly. Where do you live in PA.?

Good luck with your treatment.

Hi Chris
Welcome to OCF. You will find lots of support here. We will help you thru this battle. It can be difficult at times but it is something that can be done.

Right now, try your best to focus on the present. Enjoy the time you have before all the treatments start. Eat like crazy. At your size, you really should try to gain a few pounds. Im the same size so know you arent very big. I lost a total of 70 pounds over 3 years and 3 OC battles. Try not to spend your days worrying about what will come in the future.

If you dont mind, where in PA are you? Im in the Allentown area. There are several OC survivors who live in PA and Im lucky enough to have met several wonderful people from the forum. There are 2 who are local and we all even have the same doctors.

If you have questions, please feel free to ask. Best of luck with everything.

Chris,

Let me commend you on your attitude and outlook, keep a hold of that as you move forward. Fear of the unknown is natural, know that those of us that have traveled this road are here to support and as guides, use us as you need.

I really can't add to any of the wonderful advice given above except to reinforce the eating and Debs point of getting your husband up to speed on his caregiving role. Make no mistake that that role is not only vital, but harder then hell. Encourage him to get on this site as well and be informed and talk with other caregivers...he'll need support too.

Go Get Em

Eric

[quote=chris monkhouse]Hubby is on board as are both my parents; my Mom and Dad are both retired and live only 11 miles from my house, so while hubby is at work, they should be able to care for me when I get to that point. They have come to all of my appointments so far, I hate putting them through this, but they want to help and I know I am going to need them BIG TIME. I guess you never outgrow needing your Mommy, eh?! Thanks again, I'll let you know how I'm doing.[/quote]

Chris,
To have your parents close by is a godsend especially if your hubby has work requirements, etc. Yes, you will need your Mom and I am so happy that she (and your Dad) are there. There is nothing like a Mom's touch when you are sick.

It sounds as though you have done a lot of reading and research and best of all YOU PUT YOUR SIGNATURE IN YOUR POST WITHOUT ANY OF US ASKING YOU TO (a usual newbie thing)! By reading, you will see that most of us (you will note that even as a caregiver I use the royal we) started with the more challenging symptoms of treatment around week three. Until then...get proper rest and nutrition and things in order that, when you feel lousy, won't get done.

Again, good luck..some of your anxiety will leave once you start treatment because you will feel like you are "slaying the beast."

Chris, I agree with Eric and the rest, Attutude is a big part of thie battle and you seem to have it. Welcome to our home and visit us often and fill us in on what goes. Listen to Christine about eating and eric too. Between the 3 of us we have lost about 210 lbs. Ilost 70 in about 7 months and still am a pee wee. LOL Eat anything anf every thing. And drink plenty of water.

Jerry & Christine - Thanks! I live in Hanover PA (it's between York & Gettysburg). I LOVE Philly ! I went to 2 yrs of High School there (dad was in the military - stationed at the Navy yard at the end of Broad St). Even though I lived in Baltimore after HS for 25 yrs before moving to Hanover, I still visit Philly often - always go to 4th & South for a cheese steak at Jim's (not a fan of Pat's or Genos!)

EZJim, Eric & Deb - thanks for the support. I'm trying to eat as much as I can but throat is still very tender from surgery 3 weeks ago. So - I started drinking 3 cans of EnsurePlus along with eating what I can. I had absolutely no objections with my RO's suggestion of having the PEG surgery before treatments start, since I can imagine how critical maintaining my weight/nutrition/hydration will be for my body to heal from the treatments. Hey, maybe I should make a 'cheese steak run' to Philly pre-treatment to fatten me up?!

Thanks again to all of you guys. I am so grateful I found this site and wonderful forum - I am going to rely heavily on you all! I'll let you know how my meetings go after the Dentist appointment on Monday. I think I will feel better when I have a more concrete timeline for the beginning of the treatments.

Chris

Chris,

It's great that you have all these people on board as your caregiver. The caregiver is an extremely important role in your battle against this disease, from diagnosis to full recovery. I most strongly recommend your family join this forum as it will glean a lot of information from patients, survivors and caregivers alike. Ask questions. I am a caregiver "newbie" to this forum and believe me, there is valuable info to be had. I've been searching the web, there are blogs and such but this site is in real time 24/7. I'm glad to have found it.

Linda

Chris,

A cheese steak run sounds like a good idea. I have no real favorites, I eat them all. Let me know the next time you plan one and we can meet there.

Just curious if you husband has (had) any relatives in Lower Bucks County. I treated a very nice elderly couple named Monkhouse many years ago. Wife's name was Virginia(I think) Seems like an uncommon name and you never know. It's a small world.

Hi Chris and welcome. Sorry you have to be here but you found a GREAT place for support and information. I live in Delaware County in the Philly Burbs. Make a list of all your questions before you see the different doctors. Being the caregiver I tried to write down things as John would bring them up so we could talk to the doctors about them. It gets very overwheming when you have so many different doctors and so much information to take in. You sound like you have a positive attitude going into all this. Feel free to post any and all questions. Glad to hear you are getting the PEG. Even with it in my husband lost 30 lbs. I really don't know how he would have made it through without it.

Chris

Welcome to the best oral cancer support group in the World. You will note that many of us have gravitated to a specific piece of advice to share with newcomers. I ranged all over the place but discovered that many other posters conveyed a particular message so well that I am now on a thyroid kick. Here is my canned piece of advice:
[quote]The best remedy for worry is to take remedial ACTION. I have a suggestion that may require you to PUSH the doctors, but you will be glad you did. Insist on a TSH level blood test for his thyroid so you have a pre-TX baseline on what is normal. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth.
I hope you never need the results of this pre TX test-
Disclaimer: I have a degree of Doctor of Law -NOT Medicine[/quote]

Hi Chris,

My husband is being treated at Penn and we are very happy with the care. Communication among the various caregivers is so important. We really like the team approach. Highly recommend.

We love driving out into the country and have been in Hanover. Our son's friend's parents own a wonderful diner there.

The support on this website is great. You can post your darkest fears, too. People here understand.

Charm,
I like your advice about the baseline TSH. Very smart. Good suggestion for anyone. I had my own done recently and happy to have it documented.

Anita

CHARM - Thanks again for the tip on the THC - will discuss with my RO on Wednesday.

I went for the dental exam today - will need to have a molar extracted tomorrow, along with a cleaning. They also took impressions today for flouride trays, which should be ready when I go back tomorrow. I meet with my RO on Wednesday to schedule pre-treatment appts. I guess the ball is rolling and will probably start TX in @ 2 weeks or so. Getting real nervous about all of this - I put on a brave face for family - but you all know how terrified I am inside. The chemo doc prescribed an anti-anxiety pill for me - I wasn't going to get it filled, but am reconsidering!

Thanks again for your support.

Anita - What's the name of your son's friend's parents' diner in Hanover? My husband eats breakfast every Saturday morning at the Victory Diner while I'm at work - it's a real family-feeling restaurant and they all love him there-if he misses a Saturday, they worry @ him!

So - I only had to have one molar extracted on Tuesday. My dentist had the trays made for fluoride treatment each night and gave me fluoride toothpaste and then pronounced my dental condition stable and ready for treatment. So we met with the RO on Wednesday and yesterday I had my planning session.

Thursday I returned to work for the first time in 5 weeks. It was a very emotional day with me as I met with my staff and shared my cancer diagnosis (all but a few thought I was just home, recovery from 2 surgeries) - I am very close with most of my employees so - lots of tears followed by lots of hugs! I explained that I would probably be in-and-out for about 2-4 weeks once treatment begins, until I can no longer make the commute to the office from PA to Baltimore. Thereafter, I will be working from my computer at home and taking conference calls from home until I can't do that either. I explained that after treatment, it's a long healing process and I might not be back until sometime early summer.

Yesterday, I went to the Cancer Center with my best girl friend and had 'the mask' made, got the CT scan, etc. It did not bother me in the least to be bolted down to the table for @25 minutes while they took down all the necessary measurements, so I feel much better about how the radiation treatments will be when they start. The planning session took about 2 hours and afterward my girlfriend and I shopped our way all over town and had lunch, and then back to my house for more hours of 'girl talk' until my husband got home. It actually was a wonderful day with my very dear friend, considering the source of our get-together.

So, it looks like, if they can do all the necessary planning, and get with my chemo onc, that my first radiation and chemo treatment will be on Monday 2/1/10. I will be getting the PEG on Friday 1/29. They will keep me overnight to ensure there are no complications and I will go home on Saturday.

I can't thank you all enough for sharing your experiences on this site - although I am still scared about starting treatment, I feel much better, armed with information, and knowing at least in general, what lies ahead.

BTW - I finally did get my official dx: Stage 4, T1N2bM0

CHARM - I did speak to my RO about the THS and he said he is very aware and will be monitoring throughout treatment so that he can prescribe the appropriate medication if needed.

Hi, Chris,

Victory Diner--that's the one! My son just told me that the Smith's sold it a few years ago. They had the best cakes! We went there about 8 years ago on one of our autumn drives. Very good.

Anita

Hi Chris and welcome to OCF. I see you have already "met" some of our resident experts and supporters:) I have only been treated surgically so I'm afraid I cannot offer any information on what you are about to go through. As you can see, there are many here who can help you though.

Your posts sounds very confident and you are ready to take this thing on! That is wonderful...you sound like a very strong woman. With that kind of attitude and the support here you will be just fine.

Chris

For what it's worth, I was able to do a combination of working at home on my laptop with a secure VPN (virtual private network) set up (ironically, I had been the major player in getting it set up for top executives prior to finding out I had Cancer). Of course I was usually replying to e-mails from 2am to 4am when I could not sleep, but I did do all the conference calls during the daytime. I alternated work days with Sick leave as needed and it worked out really well for me for those four months. So your plan sounds doable (A month after the cancer TX was over however, I retired as I found out actually being there physically was too taxing plus psychologically I was unwilling to spend what was left of my life in a job receiving only complaints for successfully resolving what all others had failed at doing -then getting similar assignments that required the same combative & aggressive measures to succeed. )
You can do this.
Charm

As Charm points out, getting your TSH level before you start treatment is a very good idea. This was SOP where I was treated back in 1997. I don't know why it wouldn't still be but it is always good to ask to make certain it happens. They also ususally monitor it during treatment.

However, that is not the end of it. Since your thyroid may decide to go haywire any time from during treatment to many years later, you will also need your GP to run your TSH levels every 6 months or at least once a year or if you are experiencing symptoms. Mine went really 'out of whack' after my surgery in 2001 and I had no sypmtoms. I could have been in deep troubole were it not for the routine check ups. Your GP can have this done anytime he does a blood draw for something else.

Take care,
Eileen

Hi Chris,

I too want to welcome you here. This is such a great place to find out information that will be so helpful to you. I did not find this site until I was 3 month's out of treatment.

I learned so much here and it has helped me all the way. I am still learning from everyone here. I am sure I will learn from you as well. So keep reading and eat as much as you want!! Snack, Snack

take care.. Diane

I too managed to continue to work for quite a while during treatment and just stopped going in this past week (about mid-way through treatments). I had planned to also use a VPN client to work from home, but found that the chemo anti-nausea meds induced too much blurry vision to make this practical. I applied for short term disability (which luckily gives me at least half pay for the time I'm gone) and will be on that until the end of treatment.

My white blood cell counts had gotten so low there was talk of stopping treatment. Then, in the past few days not having to deal with work, my white blood cell counts shot way back up. Go figure that resting and staying away from lots of people is helpful. Ha! My advice is to keep working while you can (it's good to keep your mind preoccupied), but AS SOON AS you start feeling a bit down, stop going or at least try to make alternate arrangements. Getting sick and having to stop treatment is the last thing you want to do. Take care of yourself first. Work will always be there when you get back.

let the journey begin. keep us posted often.
im glad to see u have a plan...for work...but please do not be disappointed if u cant stick to ur plan, cancer has its own plan. the biggest mistake we made was setting timelines for everything and well, it just wasnt realistic. take it day by day.

good luck with ur treatments.