Very thankful to have found a supportive group with much experience and practical wisdom. I am at the onset of my journey which started 7 weeks ago with a sore throat and swollen gland. The gland had inflammation dating back to January of 2012 but took a turn for the worse. Ultrasound, CAT Scan, FNB resulted in a phone call on April 26th at 5:30 PM letting me know I had cancer. Last week was initial consult with medical team and biopsy of the tongue. Thankfully positive for HPV. Meet with balance of medical team at OSU Monday 5/13 to set plan for treatment. Support from friends and family is more that expected and global in nature. Planning for the worst hoping for the best.

Welcome aboard, sorry your here. Dang HPV virus got me too. I hope I had fun getting it, cause its sure not fun having it.

You got a lot to do to get ready. My advice post often and ask questions. The more these fine people know the better the suggestion become.

Start eating now and don't stop. Go as long as you can thru treatment. Its rough but doable.

Good luck.

Hi James,
You have a great attitude and that is half the battle. If you read my signature you will see my husband was similar in age and dx to you. It is a rough journey, but you'll get through it.
You will lose weight so really bulk up as much as you can the first couple weeks. Remember that hydration and nutrition are of utmost importance while in tx. You won't want to eat or drink, but you have to make yourself. Scrambled eggs are great because of the protein. If you make them runnyish they slide down better!
There will be lots of others coming along with much more detailed advice. Just know we are here and that you can pm any of us if you want to. As you go along remember tx doesn't end for about 6-8 weeks after your last radiation tx. We were a little blind sided by that. This site got us through it though!!
So glad to hear you have a lot of support.
Kathy

Welcome to OCF, James! Wishing you all the best with your upcoming appointments. Glad you have found the forum to help you with correct medical info and support.

Best wishes!

Hi James,

I'm a newbie to this forum but there are some great folks and good information here.

Hydration, nutrition and pain management are the keys to getting through the treatment. It's brutal but you'll survive it. I'm two weeks post and just starting to see some light at the end of the tunnel.

Glad to see you're at a comprehensive cancer center. Having a team of doctors, nurses and specialists all working together to cure you instills confidence and that as well as a positive attitude is more than half the battle.

Best wishes to you as you begin the battle.Kick cancer's tush ya hear!

Positive thoughts and prayers

"T"

Thanks to everyone who commented. The counsel and encouragement from those who have gone into battle ahead of me is priceless. Something very special in this group.

James,

What Tx are they planning?

There are a few things that you should do now:

1. Eat like there's no such thing as unhealthy foods or gaining too much weight;

2. Get a thorough dental checkup by a dentist familiar with oral cancer;

3. Make sure your next blood draw includes a measurement of your TSH levels and record that number;

4. Get Fluoride Trays made by dentist in # 2 and begin using them;

5. Read my Signature Line and feel free to PM me and I'll give you my contact numbers if you want to talk.

This site will be the BEST thing you have done for yourself outside of being treated.

Hello James!

I firmly believe that when it comes to cancer, getting the best medical advice and care available is the smartest thing you can do and only increases your survival rates.

That being said, you are in good hands at OSU, great team there with many brilliant minds. I had the pleasure of meeting Dr. Michael Caligiuri, the CEO of the James Cancer Center last year at the National Cancer Institute, along with Dr. Maura Gillison, who sits on OCF's Science Advisory Board, two extremely passionate and intelligent people who reflect the commitment to excellence at OSU.


As many of the posters above have pointed out nutrition and hydration are key. Before treatment it is recommended that you go out and eat at your favorite restaurants, and your favorite meals. Enjoy every bite and remember exactly how these fares taste, it may be a while before you get to taste them again.

Now I disagree with the majority of the nutritional advice given to patients beginning treatment (as does the American Journal of Clinical Nutrition), as there is such thing as gaining the wrong type of weight, and eating unhealthy foods through treatment. Understand that the current figures are that 20-40% of ALL oncology patients die of malnutrition, which is a figure that tells me that those that "should" be reading the AJCN have missed a few publications (or all of them).

There is a direct link between lean muscle mass percentages and cancer survival (http://ajcn.nutrition.org/content/84/3/475.full) , so when starting treatment eat like an athlete would, with the sole purpose of maintaining lean muscle mass, which will wither away during treatment. My favorite excerpt of this write up is:

"Loss of muscle mass is also known to be detrimental to survival from cancer. For example, in patients with lung cancer receiving radiation therapy, the amount of body protein (measured by in vivo neutron-activation analysis) predicted recurrence. In those in whom body protein decreased, recurrence and, ultimately, survival was worse than in patients who were able to maintain or increase muscle mass (14). Although it is possible that muscle loss occurs because of impaired appetite and, thus, reduced protein intake in those more susceptible to recurrence, the relation between muscle mass and recurrence is nonetheless striking."

Eating garbage like refined sugars, saturated fats, and anything not mission specific will not help you survive this ordeal or hold up during treatment, so focus on lean proteins (and LOTS of them) complex carbs, and unsaturated fats, much like the diet of a top level athlete preparing for competition....or a warrior preparing for battle.

Good luck, keep your chin up

Eric

Thank you Eric. I will see Dr. Gillison tomorrow and the nutritionist. You are absolutely correct on the food advice and that confirmation is appreciated. I have put on 7 pounds already but the workout regimen is building mass.

Thank You

Jim

You are most welcome Jim, keep up the great attitude my friend.

When you talk to your nutritionist have them look at Dr. Layne Norton's, PhD in Nutritional Science out of the University of Illinois, research on keeping lean body mass on a calorie restricted diet. He uses it for getting into competitive shape when cutting as he's a bodybuilder and powerlifter, however the principles will work in cancer treatment as well due to how limited our intake becomes in treatment.

Here's a link you can share, very comprehensive. http://www.simplyshredded.com/layne-norton-the-most-effective-cutting-diet.html

E

Everyone seems to have covered the important stuff so I'll simply say welcome..

I see that today is your appointment and I am wondering what you learned. I read through your post and the replies and while I didn't see anyone mention it, I am hopeful that you are taking along someone else to all of your appointments, and that you have pen /paper ready at all times. You sound very together but this is a whole new world that will involve things like masks and lots of fun stuff.

Some people keep print copies of every test result. I never did but we are all different. I don't know if there are any stats on whether that improves longevity or not!

And damn Eric, if this isn't the time for a little comfort food then I don't know when is. Add the pounds - it will not hurt you.

Cancer has a huge emotional toll as well. Someone like you who is young, in great shape and who likely has felt fairly confident about your health may take some time to deal with it, but that time will come. Do not try to be invincible. When people ask if there is anything they can do - have a list ready - ie grass.

Hugs
Donna

I assume it's BOT or Tonsil? Speaking of eating all you can eat unnecessarily prior to treatment, just to bulk up, I read excess nutrients can also feed and progress cancer. On the other hand, I basically live to eat, and ate most foods on my bucket list before starting treatment knowing I wouldn't taste much in a while, and making up for every meal I missed for the past 3.5 years lol, but 95%, if not more, what I eat is home made, fresh. Good luck.

"High levels of cellular nutrient metabolism result in ROS production and oxidative stress that can contribute to the development and progression of cancer..."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3190402/

Donna,

When I was diagnosed, I was overweight and had been eating far too much comfort food as a way to cope with the stress of what I did for work prior to cancer. Where I was coaching my sons wrestling team, I was 25lbs over what I really should've been. I kept good muscle content, but my body fat percentage was up there.

I need to be clear on this, very clear and it's supported by the American Journal of Clinical Nutrition. The wrong type of weight will hurt you, even pointed out that it certainly raises the risk of a recurrence. What you eat, and how much of it are important.

I know a lot about fighting, I've been doing it my whole life in one form or another, so when cancer came knocking it caught me unprepared the first time and it kicked my ass. One of the things that make me me, is when I get my ass kicked I learn from it.

Nutrition & attitude are the only two things we can control as a patient, the rest is up to our medical professionals and how our bodies respond to treatment. When you do the research you find what a powerful tool nutrition is, and that the right nutrition plan can help you survive and lower your chances of a recurrence, and that statement is backed up by solid science that's published by the National Institute of Health. Where we didn't look for the fight, it came to us, give it hell and use whatever means you have to win.

I may not be invincible, but if I'm going down, I'll do it swinging as my boys Nate and Charm did before me, and I encourage those that feel like I do to do the same. Excuse the passion, it's just how I am.

Good luck Jim, in your corner if you need brotha.

E

I think I'm now going to defer my comments to newbies re eating all your favorite foods to Eric from now on.

Eric could you perhaps come up with a "menu" of easy to fix or buy meals, liquid and solid, that you would recommend during and post Tx?

You bet David. I'll start writing it today and we'll get it posted. I've been working with a couple of guys with Doctorates in nutrition and Physical Therapy on these thoughts and we've got some great material to help patients in treatment and then recovery after.

As I do not want to hijack Jim's thread I won't answer any nutritional questions here and will save it for my own post. This is Jim's thread for Jim in dealing with his diagnosis and an opportunity for us to show him love and support, so that's what I'm going to do.

Let us know your results from your appointment my friend, looking forward to it.

Please, let get back to the original topic which is our new member JamesD.

Hope your appointment went well yesterday and you have a good solid treatment plan all set up.

There are several things you will need to do to prepare for treatments. Get your blood counts checked including thyroid. Visit the dentist and get any questionable teeth removed now, also get flouride trays made. Get a hearing test done. If you will be getting chemo with rads, make sure to pay very close attention to any changes in your hearing and immediately notify your doc.

Stick with us, we will help get you thru the upcoming weeks ahead. It wont be easy but if you maintain proper nutrition and at least 48 oz of water daily it will make things easier for you.

Best wishes.

Donna - appointment went well. Path is charted out beginning June 3rd. Dental visit was completed with with a follow up today. Great point on notebook and someone to assist. My wife has been to every appointment to date for that reason. And yes to no fear of taking support from others. Thank you for your support and the group at large.

Jim

PaulB - Bulking up for sure - trying to keep good proteins and calories. It is BOT and thank you for the support and advice.

Cisplatin may/will cause nausea and constipation. The docs normally have a nausea plan but ask docs what you should have in the medicine box for constipation. Both big bags of cisplatin gave me horribe and painful constipation. BOT is a pain in the neck, don't let it be a pain in the a## too.

Thanks for letting us know how the appointment went James. So happy to hear that everything has gone smoothly. I think most of us experience a true relief when treatment actually starts. Somehow taking ACTION makes most people feel empowered at a time when cancer has set you back on your heels and made you feel out of control.

Every doctor I have met has been happy to answer any and all questions you may have so both you and your wife should feel free to ask ANY questions you may have. We are also here to help with any questions we can answer - so ask away. There is no such thing as a dumb question - ever.

Hugs, and keep us up to date with how things are going with you.

Donna

We are here with you every step.

Donna Thank you once again - there is a lot of strength in this group

So today was an interesting day and a touch closer to reality. Met with surgeon for consult on PEG. I had already made the decision prior to the appointment. For me it is a motivator to keep swallowing and not use the tube. For my wife it is some peace of mind. 2nd appointment was with audiologist to establish baseline for hearing. 3rd appointment was with research team to fill out survey. Biopsy sample is in CA being verified. Insurance has blessed participation in clinical trial for chemotherapy. Should know by end of week which group I am in. Cisplatin for group 1 or Cetuximab for group 2. 3rd appointment was final CT scan to map radiation focus. Also fitted with mask. That was a dose of reality. Final appointment was dental hygienist for last cleaning and dentist for tray molds. Radiation starts on June 3rd.

Consider the nasal tube. I didn't do the PEG and only needed a tube for 2 weeks (post Tx) so why have something for 10 weeks when you most likely can get through this with a 2 week nasal tube.

Is the Erbitux used in conjunction with cisplatin? for this clinical trial? If not I would ask a lot of questions. Apparently it only works on a certain group of people based on genetics. Cisplatin is tried and true. I would not risk a recurrence just to participate in a trial when what they use normally has an excellent track record. I am not an HPV related cancer so I'm not totally up on the details and I know a few people here have used it but the consensus is that if it is to be used it should not be a stand alone chemo. It should be in conjunction with cisplatin. or another chemo. It actually has a better track record with non HPV related cancers. If I am wrong on this I am sure someone will step up and tell me but I think that was the gist of what has been floating around here. anyone else?

David thank you for sharing your thoughts. I really sense drive and determination in you. You are motivational and make me think. Unfortunately/fortunately this decision was more about comforting others.

Cheryl - thank you for your comments. If randomly selected for Erbitux it would only be used with radiation. Tomorrow I should find out which group I was selected to participate in. I will let you know.

James,

If you do go with the PEG (not sure I understand what comforting others has to do with a decision that may affect what and how you swallow the rest of your life though???) then PLEASE only use it when you absolutely can't swallow naturally, even if that means with some pain. Those muscles seem to have a short memory and can quickly forget their function. Many people using a PEG become lifetime dependent on it and are never able to eat solid foods again.

Please understand that this is a treatment that hopefully will save your life and if you do survive both the cancer and the treatment your life will be changed forever so this should ONLY BE ABOUT YOU. NO ONE matters right now other than YOU because if you do survive you will be the only person really having to deal with what's left over post treatment so please don't do anything now just to please others. You are numbers 1, 2, 3, 4, and 5 and everyone else comes after that.

I have a peg, my 2nd one, for 3.5 years, which I used solely during several treatments, months, and did not loose any major swallowing function, and thereafter eat basically everything from bread, bagels, pizza, steak, you name it, I probably ate it, and on a quest to do so lol. David is right about these muscles having a short term memory, and can loose function. Mine apparently have a good memory or were forced to come back by my eating, tasting everything I could. I find fatty food easier to eat, taste, and help swallow, so butter is my friend. Good luck.

Erbitux is the group I was selected to participate in. First treatment will be Tuesday May 28 at 9:30 AM. 1st Rad Monday June 3rd at 8:00 AM

David again I thank you for your candid comments. Understood. Somehow we will connect over the next week. My schedule is insane right now as I transition from work to patient.

Hi, Jim
it must be a relief to have your plan and get started. Eat lots of tasty food over the long weekend, and best wishes on Tuesday morning. My husband found that bring his Kindle along made the waiting for chemo, rads, blood work and so on a lot easier.
If possible, have someone with you for the first couple of Cetuximab infusions - it is possible that you may have an allergic reaction. The medical folks will be watching you carefully, but having 'designated' driver would be nice. If your significant other goes with you, make sure they have something to keep themselves occupied so they don't fret (or at least fret less).
You might want to pick up some Aquaphor if you are out shopping over the weekend - if the rash comes up quickly next week, it will help.
Although you should assume that you will be missing work for this adventure, there is some hope that it won't be a lot. Until the last week of treatment, my husband drove to work and then rads 4 days a week. He skipped all or most of work Fridays and did his chemo/rads, the last week of treatment, and most of the week following treatment. A good deal of how much you can do depends on your own reaction to treatment, how well you take care of yourself, and how flexible your work schedule is. Don't push yourself too hard!
Best wishes,
Maria

James, you are in great hands with David! He is very educated with all things relating to OC and its treatments. He is somebody I would want in my corner if I needed a hand.

If you want someone to talk to about the pros of having a feeding tube then Im your gal. Let me know if you need any tube info. David is anti-peg for his own good reasons, but he does know alot about the benefits of a nasal tube.

Best wishes!

Welcome aboard James. Another buckeye in our midst it seems. Keep a positive attitude and let these people give you some great advice if you need it ot answer any questions you might have. I have a lot of Angels that see me thru and have been for the last 6 1/2 yrs or maybe longer. and a half with OC but much longer than that. Yours will help if you listen to them.

Let me add my own welcome to the other, James, along with my best wishes for an easy trip through this exercise.

I was delighted to read that you work out now, please get started as soon as you are able to resume working out. I have had a couple of recurrences (distant metasteses, which put me in Stage IVc) and (to my MO's astonishment) never missed a day in the gym while going through the subsequent treatments. He said that in over 20 years of practicing oncology, he'd never had a patient that could use "chemo" and "working out" in the same sentence before.

My first treatments, however, with Cisplatin were another story, I had a mediport and couldn't workout for the next 6 months, and the Cisplatin made me nauseated for 90 days. I could only keep one bottle of 350 cal Ensure + down, everything else came right up, and I lost 38 lbs, going from a very solid 192 to 154.

Nonetheless, the MO agrees with me today, that working out hard while taking chemo (which elevates the metabolism) speeds the poisons through the system and makes the process much easier to bear. I have evidence that it also speeds the excretion from the system.

At any rate, by second round of treatments, a year and a half after the first remission, I got 7 4 week cycles of Carboplatin w/Taxol (changed to Taxetere after the first 3, after I reported some further hearing loss) and had no adverse reaction beyond the hearing loss.

This brings up another point, be very vigilant for neuropathy, especially any tingling or numbness in the finger tips or toes. Neuropathy is usually permanent, and the way it can affect your feet can make you miserable. So report it ASAP if you experience it. Or tinnitis. Talk with your MO for a full list of symptoms of neuropathy.

Good luck, Jim. And since you're already in good shape physically, you may have an easier time of it than you'd otherwise expect. I know I did, and I was 70 when I got diagnosed the first time.

Bart

Bart - thank you for the welcome, encouragement and advice. I can't speak enough about the members of the forum. The passion and determination to assist is remarkable. I explain to those close to me the importance of this group in my life (being self sufficient up to this point) and the hope/reality of OC Tx and survival I now possess. All of you have the right to speak and we have the responsibility to listen. That is a right earned from enduring the battle. You are one more example of this. Especially at age 70? Inspirational.

Age is just a number, brother James. Your mind is where it all happens.

A positive outlook like yours is a major asset in going thorough any situation where your life is at stake. In fact, I kinda suspect that it is the determining factor in the eventual outcome.

While I know that it sounds a lot easier than it is to do, if you can detach yourself from the outcome and simply believe that you are going to come through this with flying colors; and hold on to that as you run into the inevitable flack (the damage that is inescapable, like hearing loss, or loss of some salivary function,) you'll be amazed to find it wasn't as bad as you feared. Take it from me, this can be done if you are determined to do it.

After all, it's YOUR mind. You CAN control what your attitude to anything is if you are determined to do so.

I'm going to PM you my email address. If you have questions about any of these assertions, drop me a line.

Best Regards,

Bart

First pre therapy treatment was administered today. Erbitux double dose preceded by benadryl and steroids. Dr. Gillisons head nurse and nurse practitioner visited. blood workup was normal. Sailed through this one. Benadryl put me to sleep for most of the 8 hour day. One more prep tool (PEG) and full therapy begins Monday June 3.

Good luck with the rest of treatment. I liked the Benadryl, It made me sleep too, and the decadron pumped me up lol.

Welcome James. Glad to read that you are set in your plan. The advice you receive here is great, nothing like people who have "been there" to assist your through this process. Good luck!

-Dan

I understand, just call when you feel up to it and have the time.

So here we go. May 11th I posted for the first time. Everyone gave me the encouragement and advice I needed to prepare. Preparation time is now over. PEG surgery was yesterday home today. 1st dose of Erbitux was Tuesday. I have gained 15 Lbs. so far and laid out a nutritional and exercise program. Radiation will start on Monday June 3rd. No introductions are over and I will move to the under treatment forum Monday and keep everyone up to date. I can't say thank you enough for the inspiration, motivation and examples all of you have given to me. You are the heroes on the battleground.

James, no thanks needed.... thats what we do! We help fellow patients and caregivers get thru probably the worst time period of their lives. I was right where you are when I first found the OCF forum about 6 years ago. I am forever indebted to this organization for helping to save my life. Once you are finished with everything I hope you will stick around and become one of our 'old timers' helping the new members.

Next week is a big week for you! Great job with gaining the 15 pounds, boy that must have been fun I hope you will continue to eat all your favorites (and then have seconds) over the next few weeks. You dont want to go into this with any food cravings or regrets that you didnt have your favorite thick steak or Mexican dish, etc. Thats the key to getting thru this easier, nutrition and hydration, even when it gets tough you still must push yourself to take in enough.

Never forget, we are here for you 24/7 for questions, moral support, to motivate you to keep going and we will even listen if you need to vent. Wishing you all the very best with everything you will be doing over the upcoming days.

Gear up my friend, its time to kick that cancer's butt!!!

Good luck, first couple of weeks are not to bad.