How much quality time while undergoing treatment?

donfoo

Hi all,

I searched and read and read and did not find much covering the amount of time each day one could call "quality" time. That is when your mind and body are working well enough you can at least surf the Internet or maybe even write some emails or post an update here.

Of course, each person and treatment plan is different, hope you are lucky to avoid partaking in this scary thing called 5FU. But there are probably some similar stories from which one can have some frame of reference.

I run a small business and am trying to figure out if I need to shut down altogether or if things can limp along but that requires some active minimal involvement on my part. It seems maybe I can coast along for the first half but it appears the cumulative effects of the treatments start really taking a toll on one's general health.

Thanks
Don

Skiffin16

Unfortunately Same Song...
Don, unfortunately I'm going to have to give you the same old song, "Each of us are different, and recover differently".

I too was on nine weeks (three week cycles of Cisplatin, Taxotere and your infamous 5FU (strapped on me for four days).

Then an additional seven weeks of concurrent weekly Carboplatin and 35 daily rads, Amifostine injections each day just before.

The only "down" days I had were the big three chemo days. First they lasted nearly all day..., but on the upside. I was pumped so full of steroids, fluids and just hyped, I'd be up until 4:00AM doing office work.

Then crash and burn most of the next day, sleeping and laying around.

Other than a very few days that I just didn't feel like doing much, I was always good to go.

I did yard work, went fishing on week-ends in my boat, walks around the block or two, casual bike riding, etc...

I have a computer job, so I did have the luxury of working from home and a flexible schedule.

But I always put my time in and never missed any reports, databases models, etc...

Now around the last few weeks of rads, and it being May - Jul (living in Florida), I did farm out my yard work.

I was on such a reduced calorie intake and sweat would pour from me, I couldn't take the heat from doing the yard work... (still could get a few hours of fishing in though, LOL).

So a lot depends on you, your work, your schedule, where you live (climate wise).

It's something that you are just going to have to see how it goes at the time.

I never got sick or nauseous, other than once when a dufus friend kept talking about chemo and wouldn't shut up...LOL.

Anyways, from my experience, I didn't have many problems at all....others had a terrible time, a few had it even better than I.

A huge factor if physically you are doing OK, is hydration and calorie intake... If you can stay ahead of the game there, and physically you aren't etting beat up to bad, you can hang pretty well.

But even then you are a lean diet, much work that burns many calories is going to catch up fast...

Best,
John

phrannie51

Like John....I got Amifostine
Everyday....with it came Ativan....that's what made sleep so essential for me after radiation. If I'd just been doing chemo every 3 weeks I would have beS en more active. So much depends on how your body does and what exactly you're trying to do. I could surf the web write emails etc...no problem.

phrannie51

Like John....I got Amifostine
Everyday....with it came Ativan....that's what made sleep so essential for me after radiation. If I'd just been doing chemo every 3 weeks I would have beS en more active. So much depends on how your body does and what exactly you're trying to do. I could surf the web write emails etc...no problem.

jcortney

phrannie51 said:

Like John....I got Amifostine
Everyday....with it came Ativan....that's what made sleep so essential for me after radiation. If I'd just been doing chemo every 3 weeks I would have beS en more active. So much depends on how your body does and what exactly you're trying to do. I could surf the web write emails etc...no problem.

Don't mean to hijack the thread but
Tomorrow (day 2 of Rads) I begin Amifostine. The doc told me nausea is the big side effect, did you guys have a problem?

Also, man am I getting a lot of Rads, 19 shots on both sides of my neck. One spot is kind of sore, normal (if anything with us is normal).

As for being productive with the induction, like John the first day took all my day and was tired at the end. The third day was always my worst and was progressively better each day thereafter.

Joe Cortney
Dallas, Texas.

Skiffin16

jcortney said:

Don't mean to hijack the thread but
Tomorrow (day 2 of Rads) I begin Amifostine. The doc told me nausea is the big side effect, did you guys have a problem?

Also, man am I getting a lot of Rads, 19 shots on both sides of my neck. One spot is kind of sore, normal (if anything with us is normal).

As for being productive with the induction, like John the first day took all my day and was tired at the end. The third day was always my worst and was progressively better each day thereafter.

Joe Cortney
Dallas, Texas.

Amifostine...
Joe,

Actually my chemo MD prescribed mine, it's supposed to help with minimalizing the thick ropey phlegm that many get, and as a side, possibly helping to regain saliva.

My rads MD didn't feel that it did that much, and he doesn't prescribe it.

For me, I'm glad that she did, I never got the thick choking phlegm that many talk of. And I did get nearly 95% of my saliva back, but many here do as well.

I'm not sure how Phrannie's was administered..

My chemo center was on the floor above my rads center. So I'd go into the chemo center, they'd mix up a fresh batch then. It's a dry powder and they'd mix it with Saline, or some solution that had other stuff in it..mixer's choice I guess.

Then they'd inject it around my belly button stomach area. It would leave a red swollen welt, that was dry and itchy.

So each day they would move to a different spot.

This was all about 15 - 30 minutes before each rad as it is most effective from my understanding.

Anyways, a lot of people start having some reaction and rarely get through all 35 injections. I think I got through 32, Phrannie made all of them I believe.

For me it started as fevers....

I was fine, came home and later that night my temp shot up to 102.7. Of course you know the magic number is 100.5, so we were concerned.

Called the emergency numbers, and they said try Tylnol. It took a few hours but went down. Next day/evening samething after rads.

It was a bit of a battle with the rads facility... I didn't know what was causing it and told them I wasn't fishining the last few until the figured out what was wrong..., they were blaming it on chemo (which I hadn't had for a few days).

It was the week-end and I didn't get fever all week-end... Monday did the routine, fever back worse than ever....

Long story short, we stopped the Amifostine after the 32 injection, no more fevers, finished the last few rads....

There are a few here that have had the injections also...

RADS

Not sure what you mean by 19 shots...

Mine was IMRT, a rotating machine... It started on the lower left, zapped between 8 - 12 times, then rotated up a little...

I think it covered around nine different positions, four on t he left, four on the right, and one in the middle centered.

I got both sides zapped also, even though only had the right side that was actually cancer.

JG

jcortney

Skiffin16 said:

Amifostine...
Joe,

Actually my chemo MD prescribed mine, it's supposed to help with minimalizing the thick ropey phlegm that many get, and as a side, possibly helping to regain saliva.

My rads MD didn't feel that it did that much, and he doesn't prescribe it.

For me, I'm glad that she did, I never got the thick choking phlegm that many talk of. And I did get nearly 95% of my saliva back, but many here do as well.

I'm not sure how Phrannie's was administered..

My chemo center was on the floor above my rads center. So I'd go into the chemo center, they'd mix up a fresh batch then. It's a dry powder and they'd mix it with Saline, or some solution that had other stuff in it..mixer's choice I guess.

Then they'd inject it around my belly button stomach area. It would leave a red swollen welt, that was dry and itchy.

So each day they would move to a different spot.

This was all about 15 - 30 minutes before each rad as it is most effective from my understanding.

Anyways, a lot of people start having some reaction and rarely get through all 35 injections. I think I got through 32, Phrannie made all of them I believe.

For me it started as fevers....

I was fine, came home and later that night my temp shot up to 102.7. Of course you know the magic number is 100.5, so we were concerned.

Called the emergency numbers, and they said try Tylnol. It took a few hours but went down. Next day/evening samething after rads.

It was a bit of a battle with the rads facility... I didn't know what was causing it and told them I wasn't fishining the last few until the figured out what was wrong..., they were blaming it on chemo (which I hadn't had for a few days).

It was the week-end and I didn't get fever all week-end... Monday did the routine, fever back worse than ever....

Long story short, we stopped the Amifostine after the 32 injection, no more fevers, finished the last few rads....

There are a few here that have had the injections also...

RADS

Not sure what you mean by 19 shots...

Mine was IMRT, a rotating machine... It started on the lower left, zapped between 8 - 12 times, then rotated up a little...

I think it covered around nine different positions, four on t he left, four on the right, and one in the middle centered.

I got both sides zapped also, even though only had the right side that was actually cancer.

JG

Same machine
Just took 19 ndividual zaps (every time the red light came on is another shot of radiation. They (the tech's)tell me that's a lot.

hwt

jcortney said:

Same machine
Just took 19 ndividual zaps (every time the red light came on is another shot of radiation. They (the tech's)tell me that's a lot.

Down time
I honestly had days that I slept 20 out of every 24 hours. Those 4 waking hours were forced to eat and take a brief walk. I am talking about 20 hours of sound sleep not tossing and turning. That all occurred about the middle of my tx. Yet, while I was schlumping into tx everyday, there was an elderly man that drove himself and appeared pretty spry everyday so who knows. I say plan for the worst, as far as energy, and hope for the best. By week 6 post tx, I had all my energy back. Good luck

Skiffin16

hwt said:

Down time
I honestly had days that I slept 20 out of every 24 hours. Those 4 waking hours were forced to eat and take a brief walk. I am talking about 20 hours of sound sleep not tossing and turning. That all occurred about the middle of my tx. Yet, while I was schlumping into tx everyday, there was an elderly man that drove himself and appeared pretty spry everyday so who knows. I say plan for the worst, as far as energy, and hope for the best. By week 6 post tx, I had all my energy back. Good luck

Driving...
Yep, forgot to mention that I drove myself everyday... other than chemo days, Shelley would go on those days.

You just never know how you are going to react until the time comes.

And most of the time, it's your body that will limit you, your brain is willing. But then again, you guys/gals all know how much torture your body can stand and keep on functioning.

John

Tim6003

Skiffin16 said:

Driving...
Yep, forgot to mention that I drove myself everyday... other than chemo days, Shelley would go on those days.

You just never know how you are going to react until the time comes.

And most of the time, it's your body that will limit you, your brain is willing. But then again, you guys/gals all know how much torture your body can stand and keep on functioning.

John

I think I'm the wimp in the crowd...
I only had erbitux and radiation, nothing else. The very first "loading dose" as they called it of erbitux had me sick as a dog that same night (My wife drove me home from the tx center which was 109 miles away)....

The next week I began rads (I would get weekly dose every Thursday of Erbitux) and by week 2 of rads I was starting to feel rough. Week 4 I stopped eating via mouth (I had the peg tube put in the same week tx began) ...by week 5-7 we had to stop rads several times and restart due to severe neck burns...gosh durn that ws some kind of painful ...my 7 week course of rads went 10 weeks due to stop and go the last 2 weeks of rads..

The entire first month to 6 weeks after rads I was useless. Rarely got out of bed. No energy....

During tx the Erbitux kicked me all over the place (my onco did say I was one of the worst reactions he had ever seen to the Erbitux)

As you konw, each person is different ...I sure wish my experience had been at least somewhat closer to John's ...so as John and others said, you will just have to take the wait and see approach ....

Best,

Tim

Skiffin16

Tim6003 said:

I think I'm the wimp in the crowd...
I only had erbitux and radiation, nothing else. The very first "loading dose" as they called it of erbitux had me sick as a dog that same night (My wife drove me home from the tx center which was 109 miles away)....

The next week I began rads (I would get weekly dose every Thursday of Erbitux) and by week 2 of rads I was starting to feel rough. Week 4 I stopped eating via mouth (I had the peg tube put in the same week tx began) ...by week 5-7 we had to stop rads several times and restart due to severe neck burns...gosh durn that ws some kind of painful ...my 7 week course of rads went 10 weeks due to stop and go the last 2 weeks of rads..

The entire first month to 6 weeks after rads I was useless. Rarely got out of bed. No energy....

During tx the Erbitux kicked me all over the place (my onco did say I was one of the worst reactions he had ever seen to the Erbitux)

As you konw, each person is different ...I sure wish my experience had been at least somewhat closer to John's ...so as John and others said, you will just have to take the wait and see approach ....

Best,

Tim

Luck of the Draw...
I was lucky....

Unfortunately for some, it's one of those things you don't have much control over...

JG

jtl

Don
I am retired but I could worked through the RT. I had the traditional sore throat which was only an issue when eating and really didn't get bad until after the rt. I did not have any mucus issues and only a short bout of dry mouth. A friend of mine starts RT the first of the month after just having a mandibular resection, he is working from home during the surgical recovery and plans to do the same through RT. Good luck.
John

jtl

jcortney said:

Don't mean to hijack the thread but
Tomorrow (day 2 of Rads) I begin Amifostine. The doc told me nausea is the big side effect, did you guys have a problem?

Also, man am I getting a lot of Rads, 19 shots on both sides of my neck. One spot is kind of sore, normal (if anything with us is normal).

As for being productive with the induction, like John the first day took all my day and was tired at the end. The third day was always my worst and was progressively better each day thereafter.

Joe Cortney
Dallas, Texas.

RT
Just about everyone had some kind of IMRT but the delivery can vary depending on the machine being used. I had TomoTherapy which is technically IGRT. In any event I was told and have also read online that 70 Gy (7000 RAD) is a pretty standard dosage. It is not delivered evenly to all areas but the total is 70 Gy over the entire course of RT, usually 35 sessions. It is a lot of radiation. The basement of reactor one at the Fukushima nuclear plant melt down recently registered record radiation levels of 10300 mSv per hour. If I did the math correctly that is equivalent to 10.3 Gy, we had almost 7 times that amount. Fortunately it was not all at once or I would not be typing this. Good luck with your treatment.
John

jtl

jcortney said:

Don't mean to hijack the thread but
Tomorrow (day 2 of Rads) I begin Amifostine. The doc told me nausea is the big side effect, did you guys have a problem?

Also, man am I getting a lot of Rads, 19 shots on both sides of my neck. One spot is kind of sore, normal (if anything with us is normal).

As for being productive with the induction, like John the first day took all my day and was tired at the end. The third day was always my worst and was progressively better each day thereafter.

Joe Cortney
Dallas, Texas.

RT
Double post.

donfoo

Skiffin16 said:

Unfortunately Same Song...
Don, unfortunately I'm going to have to give you the same old song, "Each of us are different, and recover differently".

I too was on nine weeks (three week cycles of Cisplatin, Taxotere and your infamous 5FU (strapped on me for four days).

Then an additional seven weeks of concurrent weekly Carboplatin and 35 daily rads, Amifostine injections each day just before.

The only "down" days I had were the big three chemo days. First they lasted nearly all day..., but on the upside. I was pumped so full of steroids, fluids and just hyped, I'd be up until 4:00AM doing office work.

Then crash and burn most of the next day, sleeping and laying around.

Other than a very few days that I just didn't feel like doing much, I was always good to go.

I did yard work, went fishing on week-ends in my boat, walks around the block or two, casual bike riding, etc...

I have a computer job, so I did have the luxury of working from home and a flexible schedule.

But I always put my time in and never missed any reports, databases models, etc...

Now around the last few weeks of rads, and it being May - Jul (living in Florida), I did farm out my yard work.

I was on such a reduced calorie intake and sweat would pour from me, I couldn't take the heat from doing the yard work... (still could get a few hours of fishing in though, LOL).

So a lot depends on you, your work, your schedule, where you live (climate wise).

It's something that you are just going to have to see how it goes at the time.

I never got sick or nauseous, other than once when a dufus friend kept talking about chemo and wouldn't shut up...LOL.

Anyways, from my experience, I didn't have many problems at all....others had a terrible time, a few had it even better than I.

A huge factor if physically you are doing OK, is hydration and calorie intake... If you can stay ahead of the game there, and physically you aren't etting beat up to bad, you can hang pretty well.

But even then you are a lean diet, much work that burns many calories is going to catch up fast...

Best,
John

Thanks for all the comments.
Thanks for all the comments. Sort of funny, seems like there should be just one button on this site for answering questions labeled: DEPENDS ON YOUR OWN UNIQUE CIRCUMSTANCES.

As one remarked, "Plan for the worst, hope for the best". sounds like the sage advise.

@John - I also work from home, make a living building websites, so my hope is as long as I can stay pain free, lucid, awake, and can peck at a keyboard I can at least get some things accomplished.

Skiffin16

donfoo said:

Thanks for all the comments.
Thanks for all the comments. Sort of funny, seems like there should be just one button on this site for answering questions labeled: DEPENDS ON YOUR OWN UNIQUE CIRCUMSTANCES.

As one remarked, "Plan for the worst, hope for the best". sounds like the sage advise.

@John - I also work from home, make a living building websites, so my hope is as long as I can stay pain free, lucid, awake, and can peck at a keyboard I can at least get some things accomplished.

No Doubt..
More than likely you'll have plenty of time for doing what you do best....

I had very few days that I actually needed only for rest or some down time, but they are important, an take them when your body tells you they are needed.

"EVERYBODY IS DIFFERENT"

That's our catchall term, LOL...

Best,
John

phrannie51

jcortney said:

Don't mean to hijack the thread but
Tomorrow (day 2 of Rads) I begin Amifostine. The doc told me nausea is the big side effect, did you guys have a problem?

Also, man am I getting a lot of Rads, 19 shots on both sides of my neck. One spot is kind of sore, normal (if anything with us is normal).

As for being productive with the induction, like John the first day took all my day and was tired at the end. The third day was always my worst and was progressively better each day thereafter.

Joe Cortney
Dallas, Texas.

Joe...when I got
Amifostine, they'd hydrate me first....have me take an Ativan about 30 minutes before the Amifostine. The Ativan pushed off the nausea, but made me ultra sleepy (which was good for the rad time)...but there was no way I could have driven myself for radiation due to the Ativan. I'd get home about 3:30, and sleep hard till 6:00....Amifostine is strange stuff...to this day, if I'm at the Onc's office getting my port flushed and someone is getting Amifostine, I can feel my stomach roll when I see them shoot it into the IV line....I hated the flush when it first hits the blood stream, too....I stuck it out, tho...till the last day....and I called in a skipped it, and did the last day of rads without it.

p

sassysrice

Self employed blues
We are also self employed. We have a handyman business and Jeff trying to get the umph to work is hard. We have 2 "employees" who usually needs to be babysat that we are trying to keep going. But, money is tight. So far we are getting some done, luckly it's winter and we do slow down. I don't know if you have employees that can run things for you while your down, but it can be an option. Jeff has had 9 RT out of 35 and 2 chemo's out of 7 (cisperne) so far a little nausea. He just started on the fentenol patch today, not much relief for the pain.

donfoo

sassysrice said:

Self employed blues
We are also self employed. We have a handyman business and Jeff trying to get the umph to work is hard. We have 2 "employees" who usually needs to be babysat that we are trying to keep going. But, money is tight. So far we are getting some done, luckly it's winter and we do slow down. I don't know if you have employees that can run things for you while your down, but it can be an option. Jeff has had 9 RT out of 35 and 2 chemo's out of 7 (cisperne) so far a little nausea. He just started on the fentenol patch today, not much relief for the pain.

Enough energy to be the "Boss"?
We have similar profiles in that I have subs who can carry on with oversight and direction; they can not go it alone for more than a few days. If I can at least continue interface with clients - emails and calls, on an ongoing and fairly regular basis, then I can keep picking up work on an ongoing basis, and as long as I can effectively provide oversight to ensure the work is done well and clients are satisfied, then that is my plan.

Keep us posted as to how things go, especially as you hit that wonderful week 3 milestone.

Don