I am beginning to hate my birthday. 2007 around my birthday produced the initial cancer diagnosis. After going through hell all summer, it seemed that the cancer was whipped and recovery was on its way. 2008 around my birthday the ENT told me the cancer was back at the back of my throat. 35 more radiation treatments, along with 8 weeks of simoultaneuous chemo.
It is harder this time because I know what is coming and I don't have all the reserves I had last year.
We will get through this. I still have confidence in my doctors and my wife is an angel.
Thank god the ENT wanted to see the back of my throat. He couldn't because of the mucous covering it, so he put me in the OR to remove the mucous and see what he could see. It wasn't good. I think he suspected a reoccurance. The good news is that the cat scan in January was negative, so this is probably and hopefully early.

Let me get this straight...you had 39 rads and now they are prescribing another 35 and all to the throat area?

Pete, Don't hate Birthdays, it means you are still here.Can you please update your signature- it's confusing to figure out exactly where you are in tx. at this point. Wishing you well. Amy in the Ozarks

hI. Im new to the forum, I read your posting.I am free at present , after 3 years. Hpv stage 3 at the time, chemo, rad.sepsis, feeding tube, horrible shit. Do you have any idea or info about why the reoccurence? Was there a suspected reinfection? Any help will do,

David, you sound surprised at the additional radiation. My doctors all assure me that it is OK because more than six months has passed since the first go round. The tonsil was not removed, just radiated. Also, this round of radiation is more focused on the cancer, not as general in scope as the first time.

Since the cancer is in the back of the throat where the skin is thin, the spinal column is close, they state surgery is a very last resort. Especially, since to get to the spot, the ENT says part of the jaw bone would have to be removed.

No idea as to why the reoccurence, just one of the lucky ones I guess.

Pete I am very surprised if, in fact, they will be re radiating some of the same areas, 6 months passing or not. Now granted I'm coming up on 2 years since my Tx plan was determined but I was told by my RO at Moffitt who also has been published on IMRT, that he hoped I didn't have a re occurrence because he could not radiate me again, period. Now since that time a few on this site have discussed additional radiation but not to the extent of what you said. I'm sure all this depends on how much you received the first time but seeing 39 rads it's hard to believe you didn't get the full dose. Obviously I hope the science has evolved to the point that additional radiation is determined to be safe so I hope you can shed some light here.

When I meet with my RO this week I will ask those questions. My team of oncologists, RO, CO, & ENT have presented papers on there treatment plans at national symposiums. Now, while I understand, that papers are not foolproof, apparently little or no oppostion has come forward.

Sounds promising so please keep this site posted on all the particulars.

Colt,

You should start your own thread if you want answers to your questions as they will get buried in someone else's thread.

Also please post without using words that might offend.

Jerry

Pete & Dave, my daughter Christa (Jordan user name here) was started on her second round of Radiation at the U of Chicago. We were told not many places do second rounds commonly, but they do and I know MD Anderson would have also. We were seriously told of many side effects/dangers associated with it's use, but ultimately given the situation it was a welcomed option to have any treatment available.

As I said my RO and ENT both gave me three basic options.

1. Do nothing and die.
2. Surgery, which would involve removable a section of the jaw bone for access to the back of the throat.
3. More radiation. This would be just as long and more arduous as the first go round.

It really wasn't much of a choice or difficult decision.

While it may seem to be grasping at a thread, I feel that all possible options must be explored and attempted.

I definitely agree that faced with a re-occurrence I would probably want additional rad vs the alternatives which never seem to do anything but postpone it's course so I'm glad that at least that's being added to our available weapons.

As promised I saw my RO and asked him about the second rad TX. He explained it by saying that the second round was started out of deparation on patients who no other options. It was found that they started having success, especially when it had been a while since the initial tx. Also, the first time the TX covered the face from below the eye sockets to the collar bone. This time, it is very localized to just the area of the tumor, the back of the throat between the tonsils.

As he said, radiation is a matter of degrees. A third degree burn on the back of your hand will scar, but not kill. A third degree burn, the same intesity, over 80% of your body is a death sentance.

Made sense to me.

Plus I don't have many options.

Pete,
it is good that this is now apparently possible.
Let us know how you fare.

Best wishes!

Markus

Well I hope that others will find success in certain situations. I will talk to my RO and see what his current thinking is. That's interesting.

Pete I am in a much more difficult situation but we have some things in common. i do have a site on the right side of my neck stuck on the spinal cord, that could not been operated. another site on the left side of my neck that has affected the jugular vein, and although operated still no clear, and finally 2 new sites on both sides on the base of my tongue. what a hapiness!!
an RO that examined me told me that i could be reradiated again, like you, even though the last time that the neck area was radiated was in December. the kind of treatment i got in December was with Co radiation.
the only option that i know have is to try the IMRT rad along with chemo. he advised me to take some pills of pentoxifylline and 3 times per day Vit. E capsules in order not to suffer so much of the side effects of the radiation. he also suggested to have 30 rounds of hyperbaric oxygen treatments before we start the rad.
has your RO suggested anything to do before you start radiation?

Radiation is never safe - but it's all about risk vs. benefit.

I have collateral damage from the first radiation and so have many others here. Some of it doesn't even start to appear until you are several years out.

There were clinical trials a few years ago about re-irradiation and they were mainly positive in that the patients didn't have as severe side effects and the doctors surmised they would. I have not seen any data about the efficacy, maybe Brian has.

If I had a recurrence and they wanted to do radiation again I would probably do it, especially since I had IMRT to begin with.

An RO I saw at Dana Farber told me that re-radiation is never a problem if it is done quite a few years out (I think he said after 15 years) but I think using it on patients who have had rad. more recently --and having success--must be newer.

I've had all sorts of collateral damage from radiation--I think my body was damaged more than the way it affects most people but if it were my only chance of really killing the beast and I had a recurrence I would still consider having more. Though I really really hope I never face that decision.

Nelie

I have completed two weeks of rad tx. We jumped right into it, the only prep was to have a PEG re-inserted. The plug of mucous is so great that talking is almost impossible. Not because it hurts, but because no can understand me.

Pete,

Ask your doctor for approval to use a portable suction machine to help suck out all that mucous. If he won't agree, they can be rented from a health equipment company for approximately $30.00 a month. Weigh about 5 lbs. and can be recharged. Made a big difference with the quality of each day to my sister...wasn't able to swallow and wasn't able to spit the mucous out effectively either.

My thoughts are with you and hoping the best for you.

Nancy

I already have a suction machine, and you're right, it's a life saver. I had one the first time around also, and found it extremely useful.

Rob never had any options when his reoccurance happened pete,so i guess the very fact that you have, means the doctors are optomistic of a good result.

You know the script this time and should be armed with the knowledge you need to get through this second round of treatment,and although it may be tougher i am sure it will be worth it.

good luck

liz

Agree w/ Nancy. Get it! Go Pete Go! 2 weeks behind you already! Notice any changes yet?

No real changes yet, but yes I do kmow what to expect adn am not sure whether that is good or bad.

Got some good news on Tuesday, from the RO. The original prognosis had been 35 rad tx, he said he cut that to 33 with the possibility of going lower, depending on how I respond. Every little bit helps.

Whatever the number, I will get through it.

You'll be finished before you know it. Lets pray this kills it all forever.

That's the goal. I must keep my eye on the prize.

Pete, You hang in there. Day at a time and reach for the hope and strength to get to the end of this treatment with success. We're rooting for you!