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tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

Well, I have been very busy as all of you would expect. Not only with all the Dr.s visits hospitals and comparisons. I read almost daily posts that I find here. There is so much info and heartfelt kindness and emotion. I read with great curiosity, fear, concern and tears.
I'm a 48 yo grown man and I feel like such a child. May I vent?..We have the "James cancer research center" here in Columbus ohio. been there. they wanted me in a clinical trial. for Erbitux. really made me feel like an experiment instead of a person. Been to the Zangmeister center for cancer treatment. another high dollar facility. Good place they say. more proponents of uncertainty. At least medically speaking. I have settled with my wife that I will go to Drs West hospital and use their team. not very good @ diagnosis or the many abbreviations that go with all of this but here is mine. squamous cell tonsil left primary T1-2.
Tonsillectomy. Radical neck dissection left. T1N2BMo/4A. Waiting on hpv results. Port in yesterday. Peg next week.
my chosen team is now saying that I am in shape enough to handle an aggressive treatment to consist of 7 wks. of cesplatin and Taxol combined with rad. dispensed from an "IMRT". the nodes removed were low in my neck so I guess the voice may leave for a while too.
So many of you have done these things already and make them sound like a no brainer. I don't mind telling you I am afraid of what the future holds. I suppose it's a lot better than the alternative! Thanks for helping me exhale!

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Tony,
You have the same diagnosis as my partner, Mark. He is being treated at the University of Pennsylvania and we feel he is getting life saving treatment there. He had as much removed surgically, which was tonsil and surrounding area, some of the soft pallet and some of his tongue, as possible. (Clean margins - which means they surgically removed to a point where biopsy showed no cancer cells). Then he had the radical neck: all lymph nodes on his left side removed plus the muscle (some spread there). Surgeon spared the nerve that goes to his shoulder. Huge!
He is currently doing 6 weeks of rads (shorter duration than some, not sure about intensity, but it is because of the aggressive surgery). He gets 3 big hits (100 - some form a measurement) of Cisplatin. (Heard its nick name is Raging Bull...can knock you on your ass).
He hits the mid mark of his treatment on Monday when he has his 15th rad and 2nd dose of Cisplatin.
Sounds to me like you have a very sound plan. With H&N it seems there are some minor variations on treatment, but overall they are very similiar. Some folks avoid surgery and have done well with chemo and radiation. Some people have done just Rads. It all depends, I believe, on the extent of the disease. Unfortunately Mark's was stage IV with infiltration to his muscle in his neck. Head and neck squamous cells apparently don't go to other parts of the body very fast, which makes stage IV sound worse than it is; and if it is HPV16 those cells respond to treatment very well.
We are taking a "throw the book at it" approach. We have every reason to believe in a good outcome. Mark was given an 85-90% CURE rate.
I won't sugar coat it. The surgeries were rough. But very straight forward. You cut you heal. Mark so far is holding up pretty well with the rads. Eating great, has the PEG but hasn't used it yet, good energy, good spirits. 1st Cisplatin knocked him down pretty good; expecting at least that for the second. But you do it...like you said, the alternative is not really an option. You will be amazed at how you move through this one day at a time. You are wise to be here on these boards. I have morning coffee here and check in through out the day. Keeps me strong.
Stay in touch...there are many people here to move through this with you.
Kim

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

Thanks Kim, I have been watching you too. I did lose the nerve, you're right it was huge. I make my living with my hands(carpenter) I am concerned. Thanks for your input. It really does help.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Tony, I know who is just ahead of us by weeks and months. While everyone's experience is unique, when you listen to those just ahead of you it gives you some kind of perspective and framework. It's like foot prints left in the snow...you kind of know where and how to step next.
Mark makes his living with his voice; you with your hands. People find a way to overcome every day. We will cross that bridge when the time comes. First things first, can't look much further than tomorrow...making the best of today.
Take deep breaths,
Kim

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Sounds like you have a plan in place, believe me we know where you are coming from. We will all be here to support you in your treatment.

God bless

MarineE5
Posts: 755
Joined: Dec 2005

Hello Tony,

Looks like you have a sound plan of attack with this. As Kim and Hondo have already mentioned, you will do fine with this. I had the pleasure of meeting Mark and Kim one morning while I was having a follow up with my Surgeon, who happens to be Mark's also. Mark looked pretty darn good after his surgeries and was able to speak with me easily.

Hondo has battled this beast 3 different times and I can't even express what that means to someone that comes to this board and reads his history.

I had the IMRT radiation, and yes, your voice will be no more than a whisper towards the end, but it will return, mine did and everyone tells me I sound the same as I did BC ( before cancer ). The road will be bumpy for the next several months, but as Kim said, one day at a time, one step at a time. You can do this. And we will be here along the whole journey. So, ask questions, no matter what they are, vent when you feel you need to.

My Best to You and Everyone Here

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

By all means do the experimental Erbitux as it someday will replace cisplatin as the gold standard and may even save your life at this point. I wish it had been offered to me.

You state, "not very good @ diagnosis or the many abbreviations that go with all of this but here is mine. squamous cell tonsil left primary T1-2."

Your diagnosis is T1N2BMO/4A

T indicates the size of the main tumor, thus T1=tumor is 2cm or about 3/4 of an inch across or smaller
N describes the extent of spread to nearby regional lymph nodes
N2B= the cancer has spread to multiple lymph nodes on the same side as the primary tumor but none larger than 6 cm across.

M indicates whether the cancer has spread to other organs of the body.
MO = no distant spread. Most oncologist just classify this as MX=presence cannot be assessed. So someone is confident it hasn't in your case. A feather in your cap!

Stage IVA;:ne of the following applies:

The tumor is any size but invades nearby stuctures. It has either not spread to the lymph nodes or has spread to one lymph node, on the same side which is smaller than 3 cm across. The cancer hasn't spread to distant sites.

Or:

one node on the same side between 3-6 cm. or
one node on the opposote side less than 6cm, or
more than one node on either side and all smaller than 6cm across.

My diagnosis was T1N2BMX, III. Almost everyone here is at least stage 3 and 4. This type of cancer only becomes apparent at these latter stages. I was 49y/o.

You've got one hell of a year ahead of you but it's doable. I'll be 1yr. post diagnosis this July. I've come from having trouble getting out of bed to running a 10k race last week. It's a slow process and don't rush anything but my illustration is proof that you can rebound from this. right now your in the "I'm going to die camp" Leave that mindset behind, yes it's true this cancer can kill you, but for the the vast majority it;s survivable with some long term annoying side effects. You will be one of those. If you currently smoke stop. if you currently drink, stop. eat everything in sight right now and just put on weight. If you feel well physically continue to exercise until the treatment no longer allows it. Concentrate on nutrition. Rely on any help that is offered and you will walk out the other end in about a year. Give it hell!!!!!!!!!!!!!!!!!!!!!!!!!

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

I've been down that same road, and with the exception of a few pretty-sorry side effects, I'm doing very well, and you will too.

Great post, Ratface !!

Larry

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Many here have used Erbitux...and Ratface is right, it is being investigated to replace Cisplatin. Erbitux is considered a "target" chemo which does a much better job at just hitting the bad cells. Cisplatin hits the good ones too; that is why people feel so crappy on it...but it has been tried and true. I hear people talk about the acne like side effect of Erbitux which can be mild to severe. Both are chemical warfare in your body.

I have to give Ratface a highfive for the 10K run. Shows how life resumes.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Tony and Denise,

I was SCC Right Tonsil Primary with mets to lymph nodes. I was stage IV. Had 33 rads and weekly Cisplatin and 5FU(Florouracil), which was administered via fanny pack overnight. The treatment did not affect me as badly as some. No loss of voice no severe burning. I could always swallow through treatment but used the feeding tube extensively. My last treatment was April 9th and I will be returning to work on July 5th. Did have some trouble with nausea near the end but that is it. Really, pretty uneventful the whole way through. No, it was not an easy thing to endure, but it can be done. I am still recovering, and I am a Bricklayer, so it is going to be very hard for me to work, but I have to try at some point. I think the company I work for will help me and cut me some slack. So while some have extreme reactions some of us don't. I have lost 56 pounds, 30 of which I did not need. Still can't eat a whole lot but it is slowly getting better.
I guess all I'm trying to say is hang in there you can do this. Keep a winning attitude and you will be fine. God bless you and my prayers are with you both.

Best,
Steve

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

rat, your intelligence always amazes me. Congrats on the 10K walk/run. You are really outstanding. You are also a great inspriration to many others. Keep it up and thank you.
God Bless you friend,
debbie

friend of Bill
Posts: 87
Joined: Mar 2010

It's ok to be scared, normal I think. Try to stay in the now. Can't change the diagnosis, can't know for sure the future, so gather supportive people around you, let them love on and care for you, and daily try the best you can to think and do things that comfort you. When it was the roughest, I would just hold objects (and hands) that had great significance to me and simply hang on. Treatment is very hard, but it is survivable as is the disease. You can do it.

Vince

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

My dad just finished treatment for base of tongue cancer. He is one of the lucky ones that made it through treatment with no seriouse side effects. He was able to eat through treatment and only lost about 10 pounds. The last week of treatment and now has been the hardest. His tongue is very sore and has some issues swallowing. He also has a lot of mucus problems but that has been the worse.

You can get through this treatment, just stay positive and hang in there.

Please keep us updated.

Fire34
Posts: 352
Joined: Feb 2010

Tony/Denise
I was part of a clinical trial at U of Chicago and it did not make feel any less of a person. I was part of a trial between Cisplatin & 5FU and 7weeks rads vs Erbitux 5FU Hydroxyurea and twice daily radiation(49)ours was IMRT as well. We all had induction chemo with Erbitux,taxol & carboplatin. The head oncologist at U of C and put together this trial to try and come up with a better way to treat this type of cancer. It was explained to me that U of C was trying to one up their competition, whoever that may be.
Other than the rash Erbitux was no big deal. I was given antibiotic creams and stuff to control the itching etc. The adage is that the worse the rash the better it is working.
Again dont be afraid of clinical trials, other than the new normal I am 6 months post.
Best Wishes & Prayers on whatever decision you make
Dave

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

My diagnosis was quite similar to yours and Steve, and Fire, and Ratface, and, etc.....LOL.

Similar as for treatments also, Right Tonsil, lymphnode involvement, STG III, SCC, HPV+. Nine weeks of chemo (Cisplaten, Taxotere and 5FU (pump)). Then just for good measure, another seven weeks of weekly Carboplaten, and daily IMRT (also daily Amifostine injections).

I have a power-port, but no PEG, minimal neck burns (mainly dark discolored skin that peeled similar to a bad sun burn). But internally it was pretty rough for the last few weeks of rads and the next few weeks after treatment stopped).

I'm just over a year out, I've regained a huge amount of my saliva back (after nearly none), and a good portion of my taste has returned.

I do have some lasting sides as of yet, a little Turkey Neck left (much less than initially), a little of the L'Hermittes, but that is also diminishing.

I think that I'm starting to have a little thyroid problem, but haven't been diagnosed yet. Even so that's easily treatable and controlled with meds from my understanding.

Like said above and from you, treatemnt is much better than the alternative.

Good Luck, God Bless,
John

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

It is a no-brainer. Really is. I didn't know about this forum until some 8-months after my last rad, also, so I wasn't aware of all the success stories we all bear testimony to. I did research via Google, and heard what my Drs. said, but that's about it. You are gonna survive this, and your post-treatment life will be entirely acceptable. I'm 19-months, now, and I was 54 when I went thru treatment. You're 48, and will handle it okay. Keep us updated on what's what with you- we're all here to help. And-

Believe

kcass

rmdgy's picture
rmdgy
Posts: 22
Joined: Feb 2010

One year ago I was wrapping up my treatments (33 rounds of RT and 3 rounds of Cisplatin). I am a 46 male diagnosed last April with SCC in right tonsil and lymph nodes in my neck. I had a peg tube for a few months but that was removed in late July. Today I met with my Med Oncologist to receive the results of my one year post treatment CT scan. Everything was clear - the term they used is NED - No Evidence of Disease. My point is this, think about what life will be like a year from now. Last year a close relative told me "that a year from now this will all be a bad memory". Well, for those of us fighting the fight, it is not quite that simple, but it does get better! After one year, my sense of taste has finally returned and my saliva production is much better than I was expecting it to be. Good luck to you. Stay hydrated and focused on doing what it takes to get better. Think about the summer of 2011!

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Actually for me, it isn't really a bad memory, it is more a reality check. Yes everything about it pretty much sucked.

But....it really put a lot of things back into perspective. things you tend to forget how important that they are, and now you have the opportunity to enjoy the little things that you had taken for granted for so long.

So think of this as an eye opener, a reality check, and above all, a chance to appreciate the things that are so easily looked over prior to this experience.

Best,
John

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Really like Tony I just started searching and digesting every thing I could find on head and neck cancer to the point of obsession!!! It really became a problem where I started to get depressed about it. I since learned to limit my time on the computer. I truely believe you have to be your best advocate but I really over did it. I'm well organized and can regurgitate a lot of information which I've managed to store. I only hope to present what I know to be factual and hope to help someone along the way.

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

I obsess a bit. trying to not get too carried away! still like to know a bit though.

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

good advice my friend!

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Tony,

I had a small SCC on the tonsil. I had it removed via the mouth so no MND. I then had Erbitux and IMRT - 7 weeks. I had a rough ride through treatment but am 9 month out now and about to go for a 25 mile bike ride - so things are going well. The latter weeks of treatment and early months of recovery are tough but doable.

I gather the Erbitux has less side effects than the others and in some ways the choice is a toss of the coin. No easy answer which one is best or if any of them have substantial results I'm afraid.

You will be fine. Stay positive, keep hydrated, write down things as you go, question the doctors and nurses if you have ANY concerns no matter how small. Have your carer/partner in on that last point, and use this board to get good opinions and often better advice than you may get elsewhere.

You may want to consider Amifostine which can assist preventing too much damage to your salivary glands. That is my main issue now, but bearable. Talk to your doctors before you start IMRT.

Keep in touch.
Scam

davidgskinner's picture
davidgskinner
Posts: 81
Joined: Dec 2009

I read new posts every day and did all through my treatments. Lots of hope here. I am 46 and my diagnosis was very much like yours. Radiation, chemo (cisplatin) and neck dissection. I am about 3 months past treatment, but just had the neck dissection last week. As of right now I am NED (no evidence of disease).
The truth is the treatment really sucked, and the days at the end were the worst for me. That's when my emotional armor just cracked and fell apart. Don't know for sure why. I would say be ready for the days when you aren't scrambling around to get to your appointments and various checkups. Have a support group or suitable distraction for when you are alone and have nothing to do. That's when it can get real scary. I am currently using a combination of prayer and playstation3 for support/distraction.
But, you will make it through. Lots of us have. The best advice I ever got was from another cancer survivor friend who said to take it one breath at a time...
David

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

David, I like that advice. Thanks for sharing.
God Bless you,
debbie

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