Tonsil Ca

Skiffin16

sweetblood22 said:

Quality of life.
That is such a hard thing to talk about, because it's so subjective from person to person. Some people can handle adversity and pain better than others. There are some people here, that are on a peg tube, and they are happy with their quality of life. I had mine for 18 months, and ate nothing at all for 9 months, and I was completely miserable. So, for the first year, my quality of life, and my pain level seriously sucked. For quite a while, I would have welcomed death. The second year, it sucked slightly less. Then, between the second and third year, things were immeasurably better. Now, there are just brief periods of suckage. I am left with side effects, and have issues, but nothing that makes me want to leave this Earth. No, I cannot eat the same way, but I have learned to adapt. No, I cannot do things I loved to do, but I've accepted that. My side effects are a little more severe due to my unique circumstances of having a genetic blood disorder, as well as having had cancer. I had issues with swallowing, before I even had cancer, and I had a esophageal stretch before I ever got cancer. My dry mouth is probably more severe because not only did I have the radiation, but my salivary gland on the left side was removed during my neck dissection.

The thing is, how would you know whether it would be a worse quality of life for you, without going through it? There are some here, that had a relatively easy treatment, compared to others. Are you willing to take the risk of return being 45%? Idk. I had a worse shot, making it through my treatment, than I did if I did not do treatment. I had to get three opinions. One voted chemo and rads. One voted that it was too risky, do nothing after surgery. (6/10 or maybe it was 7/10, patients like me with FA died during radiation) the third opinion was to radiate, with possible erbitux. I was told the erbitux would add another 10% onto survival rate. (I was told risk of return 40% with surgery alone, 20% with addition of rads, and 10% with chemo). I refused the chemo. I weighed my risk vs. benefits, and decided that only doing rads, was as aggressive as I could gamble given my situation. I saw my brother, back in 1992, face what seemed to be insurmountable odds, when he chose to have a bone marrow transplant. He only had a 30% chance (like me) of making it. But he was already pre leukemic, and would most certainly die, if he did nothing. He went for it, but he lost the fight. These are decisions you have to talk about with family, and decide. My parents, never told my brother what to do, just as they never told me. They just said that they would support the decision. I will tell you, if I had children, especially young children, I would always go out fighting.

Sorry for the ramble, but I don't think that is the type of question I can talk about, without being a bit verbose.

Year 2 - 3....
Sucked slightly less, it's because you met me....LOL.

Year three, things were immeasurably better...Shelley, Kali and Jazzy entered your life.

See...all very explainable, LOL...

quack, quack...

JG

osmotar

Radiation
I finished 39 out of 39 rad treatments on Dec 30, 2011, this treatment included concurrent weekly infusions of carboplatin. The rad treatments came after all day infusions of cisplatin/taxotore/5fu, every 21 days. The lump on th rt side of my neck was gone after the 2nd all day infusion of the 3 drugs. My chemo doc told me the chemo kills the cancer , the radiation is like a broom and sweeps the rest of any lingering cells away. I have been one of the lucky ones thru the rad treatments, no sickness or pain, a little thickening of saliva, loss of taste, and as for rad burns almost nothing but some redness and dry skin that either aquaphor or aloe vera took care of. Even wearing the mask became routine, and the time on the table went very quickly, less than 8 minutes for the first 5 weeks. The last 2 weeks of completing the rads, my rad doc did what he called a "boost" same amount of radiation but the radiated area was smaller, treatment time less than 3 min, it took me longer to drive to treatments than the actual treatment. All in all given the option of the radiation , and the potential side effects I would still have done it.

Good luck with your treatments.

Linda

jtl

osmotar said:

Radiation
I finished 39 out of 39 rad treatments on Dec 30, 2011, this treatment included concurrent weekly infusions of carboplatin. The rad treatments came after all day infusions of cisplatin/taxotore/5fu, every 21 days. The lump on th rt side of my neck was gone after the 2nd all day infusion of the 3 drugs. My chemo doc told me the chemo kills the cancer , the radiation is like a broom and sweeps the rest of any lingering cells away. I have been one of the lucky ones thru the rad treatments, no sickness or pain, a little thickening of saliva, loss of taste, and as for rad burns almost nothing but some redness and dry skin that either aquaphor or aloe vera took care of. Even wearing the mask became routine, and the time on the table went very quickly, less than 8 minutes for the first 5 weeks. The last 2 weeks of completing the rads, my rad doc did what he called a "boost" same amount of radiation but the radiated area was smaller, treatment time less than 3 min, it took me longer to drive to treatments than the actual treatment. All in all given the option of the radiation , and the potential side effects I would still have done it.

Good luck with your treatments.

Linda

Radiation
I think rads are the primary killer delivered to the primary site and the chemo is the net that may pick up the residual cells that are outside of the rad zone. The boost is fairly common but less so on TomoTherapy machines where the thousands of beamlets can be more precisely targeted. I asked if I was getting it and that was the answer.

jtl

Skiffin16 said:

No Guarantees ~ John Boy
Like Ole John Boy above....LOL, Ole since he is older than me...bawahahaha.

In all honesty, after nearly three years out, I am having a hard time believing that my "new normal", is actually anything other than my "old normal", just with additional character.

It is what it is...it's who I am, everything you go through in life defines you. The many scars, broken bones, etc....along the way.

So for me, treatment was something that I needed to do to continue this journey...my life.

There are many in the world that have it tons worse than I have or have ever had. They don't let it control them...we have all seen people with horrible disfiguring diseases or accidents.

They survive, thet are my inspiration when I just don't feel well and wanna lay it off on something that I've been through.

Percentages...I don't rellay rely on them unless maybe two...100% and 0%.

Like Lance Armstrong, even if I have 1% chance and 99% no chance... I'm striving for that 1%.

So that added 30% or so of having rads and surviving longer... sign me up.

Best,
John

Age
Older but young at heart. "John Old Man" didn't have the same ring. Heading up your way next month to meet family in Orlando.
John3²

Skiffin16

jtl said:

Age
Older but young at heart. "John Old Man" didn't have the same ring. Heading up your way next month to meet family in Orlando.
John3²

Cool Deal...
Let me know when if you want and we can meet for a qucik coffee or chat....

I live in Lakeland and live/work relatively close to I4.

JG

jtl

Skiffin16 said:

Cool Deal...
Let me know when if you want and we can meet for a qucik coffee or chat....

I live in Lakeland and live/work relatively close to I4.

JG

That would be fun
We can talk more as it gets closer. It would likely be on Sat 2/18 in the mid afternoon.
My email is jtluce@verizon.net.

D Lewis

Zorba said:

My real question is: Quality Of Life post radiation ???
Are the chronnic effects of radiation worth the pain and suffering during the treatments. My doctor tells me that the chances of my disease returning after radiaition treatments is about 10%-15%, verses 45% if you don't have the radiation.

I'm sure many of you would consider me very foolish to even ask this question, but I make my living with food and beverage and I have always considered cooking, entertaining and eating some of the greatest pleasures of life, after all I am Greek.

If your willing to share your thoughts on QOL 1,2 3 or 4 years post radiation I'd love to hear them.

Thanks

Zorba

Zorba - gotta love the name...
RE: Quality of life post radiation

I had a stage IV Base of Tongue SCC, with mets to several lymph nodes on both sides. I had concurrent very-high-dose Cisplatin chemo and the maximum possible dose of radiation to both sides of my neck. My tumor was HPV+, and my Stanford doctor told me that I had a 95% likelihood of complete cure with no recurrence. His numbers were consistent with information I found on line about HPV+ cancers.

I am just over 18 months out from end of treatment. Thyroid is okay so far but all salivary glands got fried. No spit, no snot, no tears. I kept all my teeth, I can open my mouth wide and chew. I can swallow, although my swallowing muscles were damaged by the radiation and don't work quite so well. I don't choke, I don't aspirate food, but I do need to take smaller bites, and it takes a couple of swallows to get some stuff all the way down. Taste is good, sense of smell is perfect.

I love garlic and onions, and just about all spices. I can't completely taste sugar and salt, and pepper still burns. Hot salsa is excellent. Fruits and vegetables taste better than ever. Fish and all seafood are excellent. Chicken, pork and beef are dry and can be difficult to eat if not prepared right. I adore french breads and sourdoughs, and I can get those down with minimal difficulty. Fluffy cakes are a no-go. Hard liquor burns, and the less sweet wines taste like fine vinegar. Sweet wines, ports and madeiras are very good. Beers taste excellent.

All in all, I have a lot of dining and drinking options, and I can usually pull together an excellent meal to share with friends. I do have to ask for assistance with balancing the salt and pepper and sweet, before I put a dish on the table. And I leave the wine selection to others.

I'd say my quality of life is excellent. Leavened with my gratitude and new appreciation for family and friends, I'd say my quality of life is actually better than before.

Deb

hawk711

jtl said:

Radiation
I think rads are the primary killer delivered to the primary site and the chemo is the net that may pick up the residual cells that are outside of the rad zone. The boost is fairly common but less so on TomoTherapy machines where the thousands of beamlets can be more precisely targeted. I asked if I was getting it and that was the answer.

Like Sweets says "brief periods of suckage"
is the correct statement for many of us. I had 36 rads and came away cooking, burns, sores, etc. I am 21 months out now and have 70% of saliva and 80% taste buds. I drink a lot of milk to get food down. I find it is the best flush liquid for me, water is too thin.
Like Deb above and others, I can find something to eat all the time. I don't drink anymore except for a beer now and then. I do NA beer mostly.
The rads are what kills the cancer I believe. it kicks you arse, but after months of recovery, you'll be o.k.
You seem to have a great attitude for entering this fight. Keep that attitude and get some patience. This recouperation takes time, so be patient going forward.
All in all, the new normal is better than the alternative, even with "brief periods of suckage" LOL
Go for it with vigor,
Steve

hawk711

hawk711 said:

Like Sweets says "brief periods of suckage"
is the correct statement for many of us. I had 36 rads and came away cooking, burns, sores, etc. I am 21 months out now and have 70% of saliva and 80% taste buds. I drink a lot of milk to get food down. I find it is the best flush liquid for me, water is too thin.
Like Deb above and others, I can find something to eat all the time. I don't drink anymore except for a beer now and then. I do NA beer mostly.
The rads are what kills the cancer I believe. it kicks you arse, but after months of recovery, you'll be o.k.
You seem to have a great attitude for entering this fight. Keep that attitude and get some patience. This recouperation takes time, so be patient going forward.
All in all, the new normal is better than the alternative, even with "brief periods of suckage" LOL
Go for it with vigor,
Steve

Hey Linda (Osmotar)
Can;t believe your rads were 8 minutes. I was on the table for 25 minutes !! The time on the table may be the reason some of us have harsher side affects than others. I thought all got the 20-25 minutes on the table. Glad to hear your's was so much shorter.
Keep getting better,
Steve

osmotar

hawk711 said:

Hey Linda (Osmotar)
Can;t believe your rads were 8 minutes. I was on the table for 25 minutes !! The time on the table may be the reason some of us have harsher side affects than others. I thought all got the 20-25 minutes on the table. Glad to hear your's was so much shorter.
Keep getting better,
Steve

RapidArc
The machine that was used where I was treated is a rapidArc, the first 5 weeks it went over me 3x's right to left, left to right, and then right to left. With the boost it was just 1 pass. The 8 mins was from the time they locked the mask down to me getting off the table.

Skiffin16

hawk711 said:

Hey Linda (Osmotar)
Can;t believe your rads were 8 minutes. I was on the table for 25 minutes !! The time on the table may be the reason some of us have harsher side affects than others. I thought all got the 20-25 minutes on the table. Glad to hear your's was so much shorter.
Keep getting better,
Steve

IMRT
Like Steve, my IMRT sessions went for about 20 minutes or so...actually somewhere between 3 - 5 James Taylor songs, LOL...

JG

Pam M

hawk711 said:

Hey Linda (Osmotar)
Can;t believe your rads were 8 minutes. I was on the table for 25 minutes !! The time on the table may be the reason some of us have harsher side affects than others. I thought all got the 20-25 minutes on the table. Glad to hear your's was so much shorter.
Keep getting better,
Steve

Wow, Linda
I'm with Steve - 8 minutes sounds great.

Pam M

Zorba said:

My real question is: Quality Of Life post radiation ???
Are the chronnic effects of radiation worth the pain and suffering during the treatments. My doctor tells me that the chances of my disease returning after radiaition treatments is about 10%-15%, verses 45% if you don't have the radiation.

I'm sure many of you would consider me very foolish to even ask this question, but I make my living with food and beverage and I have always considered cooking, entertaining and eating some of the greatest pleasures of life, after all I am Greek.

If your willing to share your thoughts on QOL 1,2 3 or 4 years post radiation I'd love to hear them.

Thanks

Zorba

QOL 21 Months Out
Sound like I'm talking about my toddler - months instead of years. Ability to eat is high - only a few things I can't eat (very few - like grape skins) and a few things I can eat that aren't usually worth the effort (dry turkey breast). I can go for several hours without water if I have chewing gum. I can taste very close to 100% of what the "old" me could taste. Some things I avoid now (mild salsa - or a weak medium is my limit - but medium was my limit before; some foods that are spicy to me make my throat flare and my ears burn). Some foods require extra "Foobrication" (thx, Deb) like gravy, mayo or other sauces. Hard liquor burns too much to be worth the pain; beer is tasty. For whatever reason, onions are even more yummy now than they were for me before treatment. I recently became able to add plain glazed donut to the list of things I can eat - still requires more liquid to wash it down, though. Most of us adapt,and try not to dwell on what we can't do (or choose to not do).

Skiffin16

jtl said:

That would be fun
We can talk more as it gets closer. It would likely be on Sat 2/18 in the mid afternoon.
My email is jtluce@verizon.net.

Fishing Day
LOL, Saturday, you'd have to pick a fishing day wouldn't you....

JG

jtl

hawk711 said:

Hey Linda (Osmotar)
Can;t believe your rads were 8 minutes. I was on the table for 25 minutes !! The time on the table may be the reason some of us have harsher side affects than others. I thought all got the 20-25 minutes on the table. Glad to hear your's was so much shorter.
Keep getting better,
Steve

Actual Rads
My actual radiation was 281 seconds. It took another couple of minutes to do the CT alignment. This was on a TomoTherapy machine. Both the Hi-Art Tomo machine and the RapidArc are new variations of the standard IMRT and are competing technologies. In both cases they deliver maximum doses to the tumor while limiting damage to surrounding tissue. Supposedly my saliva glands were sparred but I still lost function, it is slowly coming back so I am hopeful. The treatments are just getting better all of the time but this equipment is very expensive and is probably not available at smaller hospitals and clinics.

longtermsurvivor

jtl said:

Actual Rads
My actual radiation was 281 seconds. It took another couple of minutes to do the CT alignment. This was on a TomoTherapy machine. Both the Hi-Art Tomo machine and the RapidArc are new variations of the standard IMRT and are competing technologies. In both cases they deliver maximum doses to the tumor while limiting damage to surrounding tissue. Supposedly my saliva glands were sparred but I still lost function, it is slowly coming back so I am hopeful. The treatments are just getting better all of the time but this equipment is very expensive and is probably not available at smaller hospitals and clinics.

"probably not available at smaller hospitals"
Yer darn tootin. That's why I'm sitting here 375 miles from home waiting to start my radiation in a few days.

CajunEagle

jtl said:

Actual Rads
My actual radiation was 281 seconds. It took another couple of minutes to do the CT alignment. This was on a TomoTherapy machine. Both the Hi-Art Tomo machine and the RapidArc are new variations of the standard IMRT and are competing technologies. In both cases they deliver maximum doses to the tumor while limiting damage to surrounding tissue. Supposedly my saliva glands were sparred but I still lost function, it is slowly coming back so I am hopeful. The treatments are just getting better all of the time but this equipment is very expensive and is probably not available at smaller hospitals and clinics.

Ha-ha.....281 seconds !
I had 35 Tomo sessions for stage 4 Left Tonsil (2 1/2 yrs ago), and my routine was to count the 31 passes of the beam. On even days, I would count up.....on odd days, I would count downward. One session, it passed around my head 32 times and I thought I'd go nuts.....LOL. Must have been towards the end of the treatment and I tended to mis-count.

Larry

osmotar

jtl said:

Actual Rads
My actual radiation was 281 seconds. It took another couple of minutes to do the CT alignment. This was on a TomoTherapy machine. Both the Hi-Art Tomo machine and the RapidArc are new variations of the standard IMRT and are competing technologies. In both cases they deliver maximum doses to the tumor while limiting damage to surrounding tissue. Supposedly my saliva glands were sparred but I still lost function, it is slowly coming back so I am hopeful. The treatments are just getting better all of the time but this equipment is very expensive and is probably not available at smaller hospitals and clinics.

Clinic
All of my treatments , chemo & rads, were done by Arizona Center for Cancer Care, they have 4 chemo sites and just 1 rad location with 2 rapidarcs.They start to radiate as early as 4:30 am and go until 10pm to accomidate work schedules. I picked 7:30pm as it allowed me to work/rest during the day..even at that time there were evenings that the place was packed, going during the day for my weekly rad doc visit it was even worse. One of the techs told me that since I started my rads in Nov they added something like 50 to 60 new clients. He also shared that this particular site is on of 7 in the valley either in a clinic or hospital, however they were one of the busiest. In the 7 weeks I went for the rads, I saw people finsih their treatments, but even sadder was seeing new people take their place.

jtl

CajunEagle said:

Ha-ha.....281 seconds !
I had 35 Tomo sessions for stage 4 Left Tonsil (2 1/2 yrs ago), and my routine was to count the 31 passes of the beam. On even days, I would count up.....on odd days, I would count downward. One session, it passed around my head 32 times and I thought I'd go nuts.....LOL. Must have been towards the end of the treatment and I tended to mis-count.

Larry

281 seconds
The only reason I know that is because they told me one time just before I went into the donut. Converting to minutes gave me something to do and I couldn't use my fingers to count.

Skiffin16

osmotar said:

Clinic
All of my treatments , chemo & rads, were done by Arizona Center for Cancer Care, they have 4 chemo sites and just 1 rad location with 2 rapidarcs.They start to radiate as early as 4:30 am and go until 10pm to accomidate work schedules. I picked 7:30pm as it allowed me to work/rest during the day..even at that time there were evenings that the place was packed, going during the day for my weekly rad doc visit it was even worse. One of the techs told me that since I started my rads in Nov they added something like 50 to 60 new clients. He also shared that this particular site is on of 7 in the valley either in a clinic or hospital, however they were one of the busiest. In the 7 weeks I went for the rads, I saw people finsih their treatments, but even sadder was seeing new people take their place.

Packed....
I'm sure it was one of the "Hottest" places in town....LOL

OK, back to the real world.

JG