Fear!! Erbitux. Alcohol consumption, fu 5 , Tomotherapy, kids back home

Hondo

Skiffin16 said:

Too Many John's ~ Monty Python
OK, there is just too many John's in this post, LOL.....

So in true Monty Python fashion, from now on (in this post), I will be known as JG...LOL

Best,
JG

John & John & John
JG ok I agree to that as I am getting confused as to what John I am talking to. Glad there is only on Hondo on here. Ha ha ha :+))

Johnyjackpot

Hondo said:

John & John & John
JG ok I agree to that as I am getting confused as to what John I am talking to. Glad there is only on Hondo on here. Ha ha ha :+))

Thanks to all.
You are all so supportive. Will look into and enquire about Erbitux etc. Does anyone have any experiance with it in the Chicago area?

I am about as lucky as possible with my wife being so supportive. She has been with me every minute of everything, even having the hospital set up a bed so she could spend the night w me after the tonsilectomy. I did write her a nice note thanking her yesterday, and wrapped her up a new iPad as she loves mine. I'm also lucky to be self employed and set up with the best assistant, so that I could be very minimally involved for months if need be. If I did play the lotto I would buy a ticket but why waste any luck, as I prefer it to be used up in the Heath department.

Everyone stay strong as will I. I keep reminding myself that if my 90% odds were reversed , I would probably do the treatment anyway, but with a lot poorer attitude.

Thanks again,John W
Ps how's John W to lower the John count?

Johnyjackpot

Johnyjackpot said:

Thanks to all.
You are all so supportive. Will look into and enquire about Erbitux etc. Does anyone have any experiance with it in the Chicago area?

I am about as lucky as possible with my wife being so supportive. She has been with me every minute of everything, even having the hospital set up a bed so she could spend the night w me after the tonsilectomy. I did write her a nice note thanking her yesterday, and wrapped her up a new iPad as she loves mine. I'm also lucky to be self employed and set up with the best assistant, so that I could be very minimally involved for months if need be. If I did play the lotto I would buy a ticket but why waste any luck, as I prefer it to be used up in the Heath department.

Everyone stay strong as will I. I keep reminding myself that if my 90% odds were reversed , I would probably do the treatment anyway, but with a lot poorer attitude.

Thanks again,John W
Ps how's John W to lower the John count?

5 fu
While getting my third chemo today I asked about avaibility of 5 fu for my phase two. Told no promises but current patients starting rad are getting it and it is not on u of c warning list yet. This means that they are discussing it with new cancer patients. This all bodes well for my start in 5 weeks.

Also have two of the three adult kids on the trird floor who have boomeanged back while saving for condo/ getting masters. They are also great, and love to cook. I have some interesting blended meals in my future I think!

John W

Johnyjackpot

Johnyjackpot said:

5 fu
While getting my third chemo today I asked about avaibility of 5 fu for my phase two. Told no promises but current patients starting rad are getting it and it is not on u of c warning list yet. This means that they are discussing it with new cancer patients. This all bodes well for my start in 5 weeks.

Also have two of the three adult kids on the trird floor who have boomeanged back while saving for condo/ getting masters. They are also great, and love to cook. I have some interesting blended meals in my future I think!

John W

Proton vs tomotherpy
I am curious about Tomotherpy. I did speak to a rad oncologist about proton beam. He said that due to the narrow field it is not as effective as IMRT. They actually want to include many of the areas that we get the side effects from because cells could be lurking there. Does this make sense? My hospital also uses IGRT with IMRT. Any info on this. Is u of c using the best machines? What about Tomotherpy? Does anyone in Chicago have one?

Thanks for everyones generous time and caring.

PS: what's everyone's opinion on moderate alachol consumption starting well after treatment end? Stop dreaming, or some hope?? Since hpv plus is not caused by alcohol consumption is it so bad? Don't spicy foods also irate those areas? Do they warn against those?

I don't want to sound dependent ,but we live within a walk or bus to 100 restraunts or more. Our favorite hobby is out with friends, couple drinks over food and laughs, then a stroll home. This is a far too regular occurrence ( 3 to six nights a week, really ). I know that I could have fun without the drinks but not quite the same level of fun.

Pss : it's now obvious why those two third floor dwellers are still here, being that the best of this city is right out our door. Mabey time to charge rent but we love having them here.

JohnW

Hondo

Johnyjackpot said:

Proton vs tomotherpy
I am curious about Tomotherpy. I did speak to a rad oncologist about proton beam. He said that due to the narrow field it is not as effective as IMRT. They actually want to include many of the areas that we get the side effects from because cells could be lurking there. Does this make sense? My hospital also uses IGRT with IMRT. Any info on this. Is u of c using the best machines? What about Tomotherpy? Does anyone in Chicago have one?

Thanks for everyones generous time and caring.

PS: what's everyone's opinion on moderate alachol consumption starting well after treatment end? Stop dreaming, or some hope?? Since hpv plus is not caused by alcohol consumption is it so bad? Don't spicy foods also irate those areas? Do they warn against those?

I don't want to sound dependent ,but we live within a walk or bus to 100 restraunts or more. Our favorite hobby is out with friends, couple drinks over food and laughs, then a stroll home. This is a far too regular occurrence ( 3 to six nights a week, really ). I know that I could have fun without the drinks but not quite the same level of fun.

Pss : it's now obvious why those two third floor dwellers are still here, being that the best of this city is right out our door. Mabey time to charge rent but we love having them here.

JohnW

Hi JohnW
Sorry but I can’t help you with the alcohol as I never touch the stuff; you might want to ask your doctor about it. I do know at some point your throat will become so sore that anything with alcohol in it will make it burn like hell. Keep up with your friends and keep doing the things you love to do as long as you can, it will make the time go faster and keep you focused on something other than your cancer.

Take care
Hondo

DrMary

Johnyjackpot said:

Proton vs tomotherpy
I am curious about Tomotherpy. I did speak to a rad oncologist about proton beam. He said that due to the narrow field it is not as effective as IMRT. They actually want to include many of the areas that we get the side effects from because cells could be lurking there. Does this make sense? My hospital also uses IGRT with IMRT. Any info on this. Is u of c using the best machines? What about Tomotherpy? Does anyone in Chicago have one?

Thanks for everyones generous time and caring.

PS: what's everyone's opinion on moderate alachol consumption starting well after treatment end? Stop dreaming, or some hope?? Since hpv plus is not caused by alcohol consumption is it so bad? Don't spicy foods also irate those areas? Do they warn against those?

I don't want to sound dependent ,but we live within a walk or bus to 100 restraunts or more. Our favorite hobby is out with friends, couple drinks over food and laughs, then a stroll home. This is a far too regular occurrence ( 3 to six nights a week, really ). I know that I could have fun without the drinks but not quite the same level of fun.

Pss : it's now obvious why those two third floor dwellers are still here, being that the best of this city is right out our door. Mabey time to charge rent but we love having them here.

JohnW

You know you're dependent when. . .
you worry about sounding dependent (or so I read somewhere on an AA poster).

Two comments: 1) As other folks have mentioned, you might never get a taste for alcoholic beverages back. Doug really can't drink much red wine or single-malt whiskey, which were favorites. He can often (slowly) enjoy a weak G&T, especially if it is made with very smooth gin. He never like beer, so we don't know if he would be able to drink it - many folks report that they are able to drink it after a few months.

2) If your body is used to a few drinks every other night or so, you might experience withdrawal if you stop suddenly when you begin treatment. This is a highly individual thing - some heavy drinkers never experience it, while some glass-of-wine/night folks get palpitations, sweats and irritability if they skip just one night. Just something to be aware of.

Bonus comment - cancer treatment can radically alter your idea of "fun."

sweetblood22

DrMary said:

You know you're dependent when. . .
you worry about sounding dependent (or so I read somewhere on an AA poster).

Two comments: 1) As other folks have mentioned, you might never get a taste for alcoholic beverages back. Doug really can't drink much red wine or single-malt whiskey, which were favorites. He can often (slowly) enjoy a weak G&T, especially if it is made with very smooth gin. He never like beer, so we don't know if he would be able to drink it - many folks report that they are able to drink it after a few months.

2) If your body is used to a few drinks every other night or so, you might experience withdrawal if you stop suddenly when you begin treatment. This is a highly individual thing - some heavy drinkers never experience it, while some glass-of-wine/night folks get palpitations, sweats and irritability if they skip just one night. Just something to be aware of.

Bonus comment - cancer treatment can radically alter your idea of "fun."

No alcohol for me.
99% of it is like trying to drink jet fuel. I tried a sip of wine at the Ren Faire and paid dearly for an hour. I can manage a kalua and cream maybe a mudslide if I numb my tongue. Reserved for once a year on my b'day.

Skiffin16

Johnyjackpot said:

Proton vs tomotherpy
I am curious about Tomotherpy. I did speak to a rad oncologist about proton beam. He said that due to the narrow field it is not as effective as IMRT. They actually want to include many of the areas that we get the side effects from because cells could be lurking there. Does this make sense? My hospital also uses IGRT with IMRT. Any info on this. Is u of c using the best machines? What about Tomotherpy? Does anyone in Chicago have one?

Thanks for everyones generous time and caring.

PS: what's everyone's opinion on moderate alachol consumption starting well after treatment end? Stop dreaming, or some hope?? Since hpv plus is not caused by alcohol consumption is it so bad? Don't spicy foods also irate those areas? Do they warn against those?

I don't want to sound dependent ,but we live within a walk or bus to 100 restraunts or more. Our favorite hobby is out with friends, couple drinks over food and laughs, then a stroll home. This is a far too regular occurrence ( 3 to six nights a week, really ). I know that I could have fun without the drinks but not quite the same level of fun.

Pss : it's now obvious why those two third floor dwellers are still here, being that the best of this city is right out our door. Mabey time to charge rent but we love having them here.

JohnW

IMRT & Corona
LOL, not in that order though....

I had IMRT for the radiation delivery....

My ENT said it was OK to have a few drinks, now and then....

Some don't recommend it, others say within limits. Same with people on here.... I'm not going to get into a debate.

I have a Corona or two now and then and an occcasional frozen margarita.

I'd wait for quite aways post treatment...Also ask your ENT or your main MD's what there thoughts are.

PS, I was just teasing about the John's...LOL.

Best,
~JG

Kent Cass

Skiffin16 said:

IMRT & Corona
LOL, not in that order though....

I had IMRT for the radiation delivery....

My ENT said it was OK to have a few drinks, now and then....

Some don't recommend it, others say within limits. Same with people on here.... I'm not going to get into a debate.

I have a Corona or two now and then and an occcasional frozen margarita.

I'd wait for quite aways post treatment...Also ask your ENT or your main MD's what there thoughts are.

PS, I was just teasing about the John's...LOL.

Best,
~JG

Chicago...
Fire34 was also treated at the U of Chicago, and you might wanna send him a Private Message. He had a lotta success there, and only good to say about the experience. Ratface and a few others are in the area, but Fire34 and maybe one other are the only ones here who were treated there. Have read a lotta good things about the place.

Would advise against alcohol consumption, as a known factor of H&N is alcohol and smokes. If you're a Cub fan, though, I can understand the need to drink, and I mean drink a lot! Lou Pinella, former Cub Manager now in Tampa Bay, is reputed to be a big fan of Coronas- seen him around on the beach, Skiffin?

kcass

longtermsurvivor

Johnyjackpot said:

Proton vs tomotherpy
I am curious about Tomotherpy. I did speak to a rad oncologist about proton beam. He said that due to the narrow field it is not as effective as IMRT. They actually want to include many of the areas that we get the side effects from because cells could be lurking there. Does this make sense? My hospital also uses IGRT with IMRT. Any info on this. Is u of c using the best machines? What about Tomotherpy? Does anyone in Chicago have one?

Thanks for everyones generous time and caring.

PS: what's everyone's opinion on moderate alachol consumption starting well after treatment end? Stop dreaming, or some hope?? Since hpv plus is not caused by alcohol consumption is it so bad? Don't spicy foods also irate those areas? Do they warn against those?

I don't want to sound dependent ,but we live within a walk or bus to 100 restraunts or more. Our favorite hobby is out with friends, couple drinks over food and laughs, then a stroll home. This is a far too regular occurrence ( 3 to six nights a week, really ). I know that I could have fun without the drinks but not quite the same level of fun.

Pss : it's now obvious why those two third floor dwellers are still here, being that the best of this city is right out our door. Mabey time to charge rent but we love having them here.

JohnW

I was asked for my preferences regarding this by the radiotherapist. I've had 35 sessions of irradiation for throat cancer back in 1998, and I know it will be tough getting through whatever radiation I'm again going to go through. The narrower the field, obviously, the less the side-effects> BUT, I asked for IMRT anyway, because I want to maximize my chances of cure. I'm going though induction chemotherapy, and I 'm pretty sure my tumor is shrinking, because my symptoms have vastly improved. BUT, I'd rather catch whatever individual cancer cells may be left around my tumor than take the chance of missing them by narrowing the field.

So I've opted for the shotgun approach, rather than the rifle approach.

BTW, at least for me, I don't consume any alchohol. It is a known cofactor in the cause of throat cancer. That was enough for me to swear it off.