Hi All,

Stumbled upon this fantastic forum and wanted to introduce myself. I have learned so much about this disease in such a short time from the people posting here.

My story:

Found a lump on the right side of my throat at the end of June this year. Already had a yearly physical scheduled with my primary care doctor as Mass General 7/02 so went about my business. Primary care took one look and immediately referred me to the head of the thyroid and neck lymph node surgery department. Needle biopsy on 7/22 showed inconclusive results except for the presence of skin sells in the pathology that couldn't be identified. His take was that it was most likely a cyst but wanted a second opinion.

Doctor at MGH referred me to the director of head and neck surgery (lymph and thyroid cancer specialty) at Mass Eye & Ear for a second opinion. Diagnosed me with (forgive me if I screw up the abbreviations) SCC of the right tonsil on 8/8. Surgery was recommended as the next action then after treatment.

Met with multi-disciplinary team on 8/16. Was told it is most likely HPV related. My MO said he does not generally like chemo for stage 3 and would revisit it as a possibility for stage 4.

Had surgery on 8/19. Original plan was tonsil and tumor removal. Doctor found the tumor was attached so just did a biopsy which confirmed HPV+. Also has a neck resection and removal of 34 lymph nodes. Two showed the cancer the rest were clean and he is confident that he got it all.

Have my radiation consult/setup this Monday. Radiation oncologist originally stated 32 treatments. They will complete them and then evaluate if chemo is needed afterward depending on results.

I am 47 years old, never a smoker, and a moderate drinker. I'm in above average physical condition and lead a fairly healthy lifestyle so I'm hoping this helps down the road. I have a million questions but will troll the rest of the forum for most of the answers as many have been answered I'm sure. A few I haven't seen are:

1) What are the one or two things people have wished they knew to do to prepare for treatment that they know now?

2) How much of an advantage is just having radiation and not radiation and chemo concurrently to me as far as side effects?

Thank you all for your excellent posts and I look forward to being a member of the community and hopefully contributing in some way.

-Rich

Welcome Rich, Dang HPV go me too. Radiation is the cure, and causes of most of the problems. Chemo improves success rate 15%ish. If you had two hot nodes, plan on chemo. Most likly cisplatin. There a whole list of things you have to do to get ready. Others will be along with tips and advice. My favorite one is go ahead and eat now and often. An extra lbs or two won't hurt you. Next is dentist. Your teeth have to be looked at very closely. You have to have everything in good shape before you start. Have floride trays made. And start using them. This cancer is cureable, so don't let the treatment damage your choppers.

Also post often, the good, bad, thought, and issues. I bet someone here has been there and the more they know about your situation, the better the advice. Treatment is brutal but doable. I am just under a year out and do well. Good luck and I see you on the boards.

Read my Signature Line. Pretty sure they will recommend chemo concurrent w/ the rad. Have your TSH levels tested pre Tx and record your normal number just in case your thyroid craps out post Tx from the rad. Do eat all your favorite foods now and forget that fat and calories are bad for you. Do get the trays made and start using them now. Do continue to visit this site and post ?'s often.

welcome Rich. You are definitely in the right place for info and support.

Thanks HD. I had my first appointment with my dentist today. She took a full set of x-rays as a baseline and started a deep root planing. I go back for more next week. Also she took the molds today. I didn't realize until you mentioned it that I need to start using them before I start treatment so cheers for that. I'll post as often as people can stand me!

David,

Actually your sig is one I read a lot. Your recovery time to being back to riding 100 miles a week is something that will keep me motivated.

I guess I should explain a little more detail on what my OC said. When I first met with him he went into detail how the treatment used to always be Chemo concurrent with radiation but that in the past year even the data shows that doing all three approaches (surgery, chemo, radiation) has no more of a curability rate or chance of recurrence than doing two (surgery, radiation). Now all things being equal that was before my surgery.

Basically you have made me determined to get clarity on their rationale and I thank you for that good sir.

Welcome Rich, sorry you have to be here but you found the right place. Feel free to ask any questions or let loose a good rant if you want to. There are many knowledgably people here and I am sure you can find any answers you need. Your not alone, we are here for you.

To answer you first question make sure you bulk up as much as possible. You have to look this as war or no rules boxing. You will lose weight through treatment. Build good muscle and eat good calories and protein. Try 4 to 5000 calories and get as much exercise as you can. You will have a decision on PEG tube and if you do get one before treatment you will lose some weight also. Make the most of preparation.

Second question your care team will make recommendation which normally is both.

Welcome to OCF! Glad you found our site to help you get thru your upcoming treatments with info and support.

Best wishes!

Hi Rich, welcome from another fitness freak. My recommendation to you is to keep to your workout schedule to the maximum extent possible while you go through your treatments.

I know it's counter-intuitive, I firmly believe (from my onw experience) that by keeping your metabolism elevated, it helps the body avoid the worst of the physical symptoms (mainly nausea) and allows the body to quickly metabolize and excrete the excess.

I had 8 weeks of rads, concurrent with three applications of Cisplatin. Unfortunately, I had a mediport implanted before beginning the chemo, and then I had to wait 6 weeks after the Treatments for a PET, meaning I couldn't even schedule the removal of the port until after the results showed no sign of active cancer. That kept me from working out for a total of 6 months.

I wasn't bothered by the radiation, but the chemo made me so nauseated I couldn't keep more than a single bottle of Ensure in my stomach, and lost 38 lbs (from a very solid 192, down to an emaciated 154.)

However, as soon as possible after the removal of the port, I got back into the gym and started working hard to rebuild my body. When a distant metastasis was discovered in my liver 18 months later, it was treated with Carboplatin and Taxol/Taxetere in 4 week cycles (3 weeks of one infusion/week, with the last week free.) During this treatment, I never skipped a day in the gym, and I never felt any nausea. Do the math. Keep working out, you'll thank me.

Fitness freak here as well...

My first mistake was trying to " bulk up" by increasing my healthy diet. Two chicken breasts instead of one won't cut it. Got behind the eight-ball right off the bat. You need calorie dense (read "crap") stuff like gravy, ice cream, sweets.

Second, early on I did my usual 6 mile training run. That was actually the day after my first chemo and 3rd day of rads. Thing is, if they've given you a calorie target it is NET not gross. If you burn 600 you have to replace that plus your target or once again you're behind the 8-ball. I did really really well IMO because I was in shape so I guess it's a matter of finding the right balance.

I did my deal with no PEG and had to cheat on my weigh-ins to finish. Busted my red line weight the week after my last rads. I'm glad I did it that way but its hard. Being an athlete will help you a lot.

Welcome Rich,

1. In addition to the TSH baseline David mentioned, a baseline eye exam, testosterone, creatinine, and hemoglobin levels, with the last two are common with your blood test monitoring.

I underestimated chemo, so went in thinking I was stronger lol, not even knowing what chemo I was getting, just that it was Induction chemo. I was exercising during my week in the hospital, walking around, doing push-ups, using the room chair as weights, but things went down real fasttje 5th day.

As far as exercise, moderation. Excessive exercise can lower your immune system. I was a gym rat most my life since 15, was 245 before treatment, and lost 110 pounds in a matter of weeks. Maybe it was my exercise reigning that pulled me though from near death, which lasted 8 months, but some things may not be prevented, and just happen.

The other is going onto public places can expose one to infections with a compromised immune system, so precautions should be taken, limited, and with any yard work, even hospitals.

Definitely get the fluoride trays, prescription fluoride, and other oral care suggested. I didn't, long story, I knew about them, and did not want to even go near a hospital after my experience, so I went to a local one instead of an oncology one, and none were recommended. And went along with that. Again, I thought I was somewhat stronger lol, and now I'm going to need all my teeth removed due to deminerlization, cavities thuus breaking off, cracking, falling out.

Get copies of every blood test, scans, the cd's, reports, surgical and pathology reports. It's good for knowing, and for reference in the future, and would need for any consultations.

Many more like preparing yourself if things worsen, like seeing about finances, employment, benefits, not being able to work, insurance continuation. The social worker at the hospital pre-treatment even suggested filing for SSDI. I was like you're kidding me in my mind. Turns out I needed it, but didn't get a chance to file until 8 months later when I was released from the hospital, critical care nursing home, but had to learn about, apply, given contradictory information while in my hospital bed as fast as short term disability, long term disability, and employment benefits with

2. There are many studies with radiation alone in HNC vs with Chemoradiation, which has better outcome, but no difference in overall survival, I believe, which I can't figure out when Chemoradiation has fewer recurrences, more local-regional control, less distant metastases off the top of my head, but radiation alone does have less toxicities.

Good luck.

[quote=Bart]Hi Rich, welcome from another fitness freak. My recommendation to you is to keep to your workout schedule to the maximum extent possible while you go through your treatments.

I know it's counter-intuitive, I firmly believe (from my onw experience) that by keeping your metabolism elevated, it helps the body avoid the worst of the physical symptoms (mainly nausea) and allows the body to quickly metabolize and excrete the excess.

I had 8 weeks of rads, concurrent with three applications of Cisplatin. Unfortunately, I had a mediport implanted before beginning the chemo, and then I had to wait 6 weeks after the Treatments for a PET, meaning I couldn't even schedule the removal of the port until after the results showed no sign of active cancer. That kept me from working out for a total of 6 months.

I wasn't bothered by the radiation, but the chemo made me so nauseated I couldn't keep more than a single bottle of Ensure in my stomach, and lost 38 lbs (from a very solid 192, down to an emaciated 154.)

However, as soon as possible after the removal of the port, I got back into the gym and started working hard to rebuild my body. When a distant metastasis was discovered in my liver 18 months later, it was treated with Carboplatin and Taxol/Taxetere in 4 week cycles (3 weeks of one infusion/week, with the last week free.) During this treatment, I never skipped a day in the gym, and I never felt any nausea. Do the math. Keep working out, you'll thank me. [/quote]

Bart,

Thank you for this. This is an amazing thing for me to read and take hope from. I had planned to work out as much as possible and you have confirmed what I thought that it can help you heal so much faster or at least just make you feel better emotionally.

Interesting that you say that you weren't bothered by the radiation. That's all I'm having for now (they may do chemo at the end, but all doctors think it unlikely). Did you do anything special from that standpoint that you think helped?

Stay strong brother and keep inspiring people.

Thanks Rich.

I'm afraid that I don't have anything to contribute about the radiation. I have to assume that my reaction is a genetic accident, because I was caregiver to an ex-wife who had much less radiation and much more severe reaction to it.

I'm frankly completely mystified. I have a ring of scar-tissue inside my throat from the experience, yet I did not ever feel anything beyond the mildest possible discomfort at any point; and even that did not feel like it was connected to the radiation (i.e., no burning sensation ever.)

Hi Rich,

Welcome... you've received a lot of really good info. Just keep in mind the mantra "Everyone is Different".

The key is hydration, nutrition and pain control. Do the best you can but don't be surprised if you get hit upside the head.

Positive thoughts and prayers

"T"

The amount of Grays (Gy), fractions, field, location of radiated area are different in the type, location of cancer that can matter, like oral vs oropharyngeal, nodal or non nodal, and other involvement, where it's directed mainly, can be a reason for different effects, and so each person is different too with treatment. Good luck.

PaulB,

I read your comments about not working out too hard with considerable interest.

I've spent the last day pondering this, and after careful consideration, I have to say that I disagree with you conclusion about that, even though I agree with everything else you recommend.

My first Tx regimen was when I was 70, I'm 74 today and I'm taking Xeloda (my cycles are 14 days of 2500mg/day; followed by 7 days w/o chemo.)

I'm in my off-week of my third cycle and will have a PET on 10/1 (I start my 4th cycle on Monday) to assess progress on knocking down the latest set of tumors in my liver. This is my third recurrence, but won't be my last because I'm Stage IVc. (100% mortality in 5 years.)

Fatigue is probably the most common side effect of nearly any chemo, and I'm really feeling it in the gym right now. This week, I'm using to build back, but yesterday, when the concentration (of chemo in my system) was at its peak, I could only complete three of my rounds (a round is 20 pushups, 10 pullups and 10 dips). Tomorrow I hope to complete four; and by friday, five.

When I had my first recurrence, it was treated with IV infusions of Carboplatin and Taxol (later switched to Taxetere to reduce hearing loss.) Cycles were one infusion/week for 3 weeks plus a week off. I had a total of 7 or 8 cycles, and at least twice, was refused (did not get any chemo) because my immune system had crashed, or my red cells had.

Those were the only two times I missed a day in the gym (and a hard work out) in that 7 or 8 month period. My gym days are always M-W-F, and every other week, I was working out hard on the Friday after my infusion on Thursday.

Oddly enough, the Xeloda gives me more fatigue than the Carb/Tax mixture, but I still make a fairly quick recovery. I'll report tomorrow if I fail to get 4 rounds.

That's ok to disgree. Whatever works for you or anyone else, and don't disagree for the most part about working out. I have some do's and dont's for myself. Everyone is different, have different treatments, reactions, underlying health issues, and mentioning infections because they can be serious, turn for the worse quickly, with a compromised immune system like cancer, and chemo can lower them further, and reason they stop treaments sometimes due to a low WBC, so it was worthy to mention about excessive exercise, to my knowledge, and being in public places in case anyone is interested. I think I mentioned gardening too, which has baceria in the soil, cats like to frequent, and their feces can spread illnesses to humans. At least wear gloves, wash hands afterwards, some will say wear a mask, and definitely take precautions in a public pool or gym.

As far as exercising heavy can lower your immune system I still believe so, have read about it many times, and happened to me, friends of mine, who were heavy runners. Maybe our ideas of a heavy workouts are different? I'm talking 6, 7 days of heavy exercising, running, biking, or swimming, and serious weight lifting. 3 Days does not sound excessive, except if doing for several hours each time.

Good luck tomorrow.

Hi Paul,

I definitely agree when you kick it up to 6 or 7 days a week, and also agree that our ideas of "heavy workout" are different. Although I've done that, it's been a long time and not something I want to repeat. I salute you, you are a beast, and I mean that in the friendliest and most positive manner possible! Respect!

I've got too many body parts that no longer work to be able to pursue that path, even if I still wanted to, and I'm happy to keep memories of the past safely ensconced in the past. Today, "Hard workouts" mean giving it everything I've got and leaving when the tank is completely empty.

To me, that point is where my body tells me that if I do another rep, it's going to cost me the contents of my stomach.

Thanks for the friendly feedback and reality-check!

Bart your accomplishments speak for themselves. We are all different and respond differently to treatments. I am dying to get back to pre treatment workouts a nd will when my body says go.

I lovvvvvvvve that post-cancer, we can chat fitness w/70+year-old gym fiends and multi-recurrence survivors!!!

I agree with you completely there Bart. Neither can I do what I used to nor really want, maybe I would lol. Fyi. I mention infections often, cause that's one the things that almost did me in. Food too, I don't keep leftovers more than two days or food left out too long. Maybe we can exchange routines one day when I start again, and lile the three days too. Keep on pumping.

OK back to Rich. As we all say everyone can be different so you do what you think is best for you and how you feel. For me the combo of radiation, chemo, fear, anxiety, not having the benefit of this site until post Tx, the fact that I was not even tested for HPV until post Tx and the fact that HPV was virtually unknown when I was treated all led me to kinda shut down and wait my Tx out. For whatever reason or all those reasons I couldn't have exercised even if I wanted to from my 2nd chemo thru the first few months Post Tx.

[quote=davidcpa]OK back to Rich. As we all say everyone can be different so you do what you think is best for you and how you feel. For me the combo of radiation, chemo, fear, anxiety, not having the benefit of this site until post Tx, the fact that I was not even tested for HPV until post Tx and the fact that HPV was virtually unknown when I was treated all led me to kinda shut down and wait my Tx out. For whatever reason or all those reasons I couldn't have exercised even if I wanted to from my 2nd chemo thru the first few months Post Tx. [/quote]

Thanks David,

It sounds like I have been fortunate to be diagnosed in a time where there is better understanding of how to identify HPV as the cause and then treat is specifically. That seems to be a lot of the reason why they now want to use just radiation and not chemo also for which I feel fortunate.

Good luck to us all, ladies and gents! And my thanks to ChristineB and Davidcpa and all the other Admins, mods and staff who make this wonderful forum a possibility!

A positive attitude (as shown by richl796 and everyone else here) is a great asset in fighting and conquering this insidious disease. Stress is a major enemy, and a positive attitude perhaps the best weapon of all in the battle.