It Is Official: Stage IIIC and FOLFOX Starting Soon

NewHere

From what I was told last week, before report really reviewed, sounded like Satge III C and FOLFOX (like NED, another term I had not idea about a month ago).  Meeting with Oconologist next week to start the next part of this off. Infusion vs pills and all the rest.

I am a little over two weeks out from surgery, but seem to be doing well with things so it seems I may be starting sooner than I thought.   

Still not sure how I wound up here.  Less than 6 weeks ago I did not have cancer (well I did but just did not know about it ) 

 

Trubrit

Good in a bad kind of way

I'm still sorry you have the Cancer, but Stage III is better than stage IV, so it's good. 

Now once you get going with treatments, you wil really feel like you are doing something about it. 

I'm happy to hear that you are healing well from your surgery. 

Sue - Trubrit

Easyflip

Okay,

next step is to get a port. Right side won't interfere with a seatbelt (if you're in the US) I heard power ports were good. Not sure if that's a brand or a type. Good luck with Folfox! More later...

Easyflip/Richard

NewHere

Trubrit said:

Good in a bad kind of way

I'm still sorry you have the Cancer, but Stage III is better than stage IV, so it's good. 

Now once you get going with treatments, you wil really feel like you are doing something about it. 

I'm happy to hear that you are healing well from your surgery. 

Sue - Trubrit

Stops The Not Knowing

As you and others here know, it is the waiting and bits and pieces which can drive you nuts.  I was pretty sure is was Stage III C before and knowing now is a plus.  I said the same thing, it could have been Stage IV.

I am still incredulous on how little discomfort, in light of what was done, that I had.   A couple of days of spasms (not full days) in the hospital that Ativan knocked right out.  At home, some spasms.  Think i took a total of two tylenol and one Ultram.  Really remarkable how this went (robotic surgery).  And the prep about walking from everyone here.  

Set an appointment with my surgeon for September, says he did not need to see me until chemo done.  He is thinking I probably am starting sooner rather then later.  Will know next week.

NewHere

Easyflip said:

Okay,

next step is to get a port. Right side won't interfere with a seatbelt (if you're in the US) I heard power ports were good. Not sure if that's a brand or a type. Good luck with Folfox! More later...

Easyflip/Richard

Sitting Here With Virtual Seat Belt

Trying to figure out which way the seatbelts work and whether I will be passenger more than driver.  As a driver, it will go from top left to lower right.  Reversed as passenger.  

I am thinking I may not be really up for driving?  I have no idea.  LOL.  Will ask about power ports.  I do not even have an idea about those yet in terms of how they are inserted, proper care (showering) and the rest.  A whole new skill set for sure.

 

 

Trubrit

NewHere said:

Sitting Here With Virtual Seat Belt

Trying to figure out which way the seatbelts work and whether I will be passenger more than driver.  As a driver, it will go from top left to lower right.  Reversed as passenger.  

I am thinking I may not be really up for driving?  I have no idea.  LOL.  Will ask about power ports.  I do not even have an idea about those yet in terms of how they are inserted, proper care (showering) and the rest.  A whole new skill set for sure.

 

 

No problem

i didn't have any issues with wearing a seatbelt. Once the port is in and the incision healed, you don't really feel it (unless you plan on wearing your wife's bra). 

It didn't even bother me when I had the port accessed 24/7  

Sue - Trubrit

John212

Knowledge is power

Your experience mirrors mine: I was scared sh**less until after the surgery and pathology report. Then, when I knew what I was facing, I calmed down. I found that it was only a few days out of each two-week treatment cycle (typical with FOLFOX) where I didn't have the energy to drive. Most of the time I just wanted to be in control of as much of my life as I could get my hands on. For me, getting the port inserted was similar to having a colonoscopy: it meant a light general anesthesia and I was in and out of the hospital in just a few hours. 

It will only get better from here.

NewHere

Trubrit said:

No problem

i didn't have any issues with wearing a seatbelt. Once the port is in and the incision healed, you don't really feel it (unless you plan on wearing your wife's bra). 

It didn't even bother me when I had the port accessed 24/7  

Sue - Trubrit

I Have A Way Around It

I will just find a mistress and wear her bra and not my wife's 

The other part is also good to know about the port.  

NewHere

John212 said:

Knowledge is power

Your experience mirrors mine: I was scared sh**less until after the surgery and pathology report. Then, when I knew what I was facing, I calmed down. I found that it was only a few days out of each two-week treatment cycle (typical with FOLFOX) where I didn't have the energy to drive. Most of the time I just wanted to be in control of as much of my life as I could get my hands on. For me, getting the port inserted was similar to having a colonoscopy: it meant a light general anesthesia and I was in and out of the hospital in just a few hours. 

It will only get better from here.

Thanks

Good, sounds minor to put it in.  Interesting about the energy.  I have been reading some of the things here where it sounds like reactions (including getting tired) seems to never fit a pattern among all patients nor for even one patient (i.e., nothing for first two treatments, third one causes problem, etc.) but it sounds like I may have been painting a more dire picture in my mind.  I was actually discussing this earlier - if I know that day x and y after the second day of the two day treatment is going be the tired days, well work around it.  Sounds like you had a good pattern develop along those lines?

My other concern is also the blood count issue and how I need to deal with that.  I will probably err on the side of caution, but I have a feeling that is going to be tough, such as not going to various meetings where I am member of various organizations or undertaking some things I do where there is a chance I could be exposed to people who have various illnesses, let alone going to ballgames as we discussed.

But it is really only 6 months, plus whatever time after for counts to get back to normal.  (I have not told some of these groups yet, though I am guessing being absent for 6 months, someone may notice )

Coppercent

Everyone is Unique

You should always follow your doctor's advise but I think you will find it is not as bad as your mind is telling you it will be.  You should still be able to attend your meetings.  Most people that I went through treatment with worked full time.  I worked in a University around lots of students and did just fine.  My chemo buddy was an RN and kept working through out without any issues.  My doctor was not the over cautious type so he encourage work and keeping my regular normal schedule. Just take it one day at a time.  As for the port, mine is on the left side.  I drove to and from treatment and did not have any issues with the seat belt. Good luck. 

Fight for my love

Good luck with your

Good luck with your treatments, hope everything goes well.

NewHere

So Now Getting Ready

They are scheduling me to have a port put in early next week (maybe by the end of this week if there is space), and chemo wil start within a week after that, if not sooner.  Met with the oncologist yeserday and he seemed really good in terms of both knowledge and bedise manner (just like my surgeon, been lucky with that).  Looks like it is only one day going to get IV and then two days on the pump - one trip every two weeks.  Disconnect the pump after two days.  Also seems the pumps they have do not require any batteries.  

So I am  pleased with two little plusses there.  You take the victories and bits of good news as you get them 

Lovekitties

NewHere said:

Sitting Here With Virtual Seat Belt

Trying to figure out which way the seatbelts work and whether I will be passenger more than driver.  As a driver, it will go from top left to lower right.  Reversed as passenger.  

I am thinking I may not be really up for driving?  I have no idea.  LOL.  Will ask about power ports.  I do not even have an idea about those yet in terms of how they are inserted, proper care (showering) and the rest.  A whole new skill set for sure.

 

 

Seat belt issue

When my sister got her port, she was given a small rectangular pillow to put between her and the seat belt at the port location.

She really didn't use it much.  But it was an option.

Marie who loves kitties

John212

NewHere said:

So Now Getting Ready

They are scheduling me to have a port put in early next week (maybe by the end of this week if there is space), and chemo wil start within a week after that, if not sooner.  Met with the oncologist yeserday and he seemed really good in terms of both knowledge and bedise manner (just like my surgeon, been lucky with that).  Looks like it is only one day going to get IV and then two days on the pump - one trip every two weeks.  Disconnect the pump after two days.  Also seems the pumps they have do not require any batteries.  

So I am  pleased with two little plusses there.  You take the victories and bits of good news as you get them 

That's the attitude!

Sounds like you'll be getting the gold standard of FOLFOX W/ 5FU. Everyone responds differently, of course, but I found that apart from neuropathy-related issues, I had almost no problem with this chemo regime that a long nap wouldn't fix. Good luck with the port insertion and the start of infusions.

NewHere

John212 said:

That's the attitude!

Sounds like you'll be getting the gold standard of FOLFOX W/ 5FU. Everyone responds differently, of course, but I found that apart from neuropathy-related issues, I had almost no problem with this chemo regime that a long nap wouldn't fix. Good luck with the port insertion and the start of infusions.

It Is Not A Nap

It is processing ideas for work without have visual interference

They also told me that the OX component will only be used 9 times.  The first without it to see how I handle the other parts to help isolate the drugs and reactions and then only 9 times.  They said research has indicated that risks of neuropathy increases after 9, while the benefit difference between the 9 and 12 is negligible (if at all).  Obviously they will also be monitoring me carefully during all this.

I have no idea, but the oncologist seemed to be so on top of everything, studies, tests, trials, research.  Nothing was off limits on questions or answers.  He spent a good amount of time with my wife and I really going through it.  

These people are some serious hitters in this field, but their bedside manner and approach is just as impressive.  

I am beginning to feel like the dude from the Dos Equis commercials, "I do not normally have cancer, but when I do I choose Sloan."    (Making sure the humor component stays high, taking your advice there as much as possible. Really does help, though sometimes the anxiety creeps in a tad.  Though if I had no anxiety from time to time I would be concemed.)

Trubrit

NewHere said:

It Is Not A Nap

It is processing ideas for work without have visual interference

They also told me that the OX component will only be used 9 times.  The first without it to see how I handle the other parts to help isolate the drugs and reactions and then only 9 times.  They said research has indicated that risks of neuropathy increases after 9, while the benefit difference between the 9 and 12 is negligible (if at all).  Obviously they will also be monitoring me carefully during all this.

I have no idea, but the oncologist seemed to be so on top of everything, studies, tests, trials, research.  Nothing was off limits on questions or answers.  He spent a good amount of time with my wife and I really going through it.  

These people are some serious hitters in this field, but their bedside manner and approach is just as impressive.  

I am beginning to feel like the dude from the Dos Equis commercials, "I do not normally have cancer, but when I do I choose Sloan."    (Making sure the humor component stays high, taking your advice there as much as possible. Really does help, though sometimes the anxiety creeps in a tad.  Though if I had no anxiety from time to time I would be concemed.)

Good!

You've got a plan, you're heading in the right direction, you will find that things feel better, knowing that you're doing something. 

I wish you the best of luck and hope that you swim through this chemo regime just like John.  

I know you'll keep us posted. 

Sue - trubrit

NewHere

Trubrit said:

Good!

You've got a plan, you're heading in the right direction, you will find that things feel better, knowing that you're doing something. 

I wish you the best of luck and hope that you swim through this chemo regime just like John.  

I know you'll keep us posted. 

Sue - trubrit

Thanks

Got the plan and overall pretty much ready for it, though I know more periods of anxiety coming as each step about to happen.   The port placement, not too much.  But worrying about what is seen on the PET scan then when they actuallo hook me up to chemo the first time (and probably each time in the game of how will I feel roulette.   )  Nothing to to be keep on keeping on.  Already filled in the days for every two weeks and have the projected last date of mid-August.  ONe day, one treatment at a time.

Starnge writing this because I know everyone here before me has had the same path to walk already.  I figure by the last treatment it may hit me that I had cancer, part of me is still outside looking in on it.  Maybe just a coping mechnism.

 

Easyflip

NewHere said:

Thanks

Got the plan and overall pretty much ready for it, though I know more periods of anxiety coming as each step about to happen.   The port placement, not too much.  But worrying about what is seen on the PET scan then when they actuallo hook me up to chemo the first time (and probably each time in the game of how will I feel roulette.   )  Nothing to to be keep on keeping on.  Already filled in the days for every two weeks and have the projected last date of mid-August.  ONe day, one treatment at a time.

Starnge writing this because I know everyone here before me has had the same path to walk already.  I figure by the last treatment it may hit me that I had cancer, part of me is still outside looking in on it.  Maybe just a coping mechnism.

 

I was

where you are now almost exactly 2 years ago. Your doc sounds very good. I had 10 and 1/2 infusions of oxy. They cut it out for my 12th because of neuropathy and blood counts. Funny how they say you only need 9 but they still do 12 all the time, oh well. The idea of chemo freaked me out of course but the reality of it wasn't too bad for me. Emend worked great for nausea and I didn't lose my hair. I had cold sensitivity and weird taste sensations but nothing I couldn't handle. I didn't like sleeping with the stupid pump, it made noise and I got wrapped up in the tube. Chemo can cause insomnia and I was given Ativan for it. I remember being very tired.

You're early in the process and I can imagine it all feels very surreal. I too was busy with the nuts and bolts of treatment but I do remember one specific night, in the dead of night, when it 'hit' me that I actually had cancer. I started to feel panic but then something odd happened. A very warm reassuring 'something' washed over me and calmed me. I'm not super religious or extraordinarily brave and the 'something'  could have been my own mind but I'm very grateful for it because I haven't been afraid since. It's actually been a pretty peaceful and happy last two years for me despite my further cancer trials. I hope the same or something similar for you. That night I found out I'm not afraid of dying and that's taken the wind out of feelings of fear and anxiety. If it is divine I'm completely grateful and if it's some primal protective brain thing I did I'm grateful for that too. It would suck to be afraid all the time.

Keep being funny, it helps. I'm a funny guy too : ) And you'll get a lot of attention, enjoy it! Good luck!

Trubrit

NewHere said:

Thanks

Got the plan and overall pretty much ready for it, though I know more periods of anxiety coming as each step about to happen.   The port placement, not too much.  But worrying about what is seen on the PET scan then when they actuallo hook me up to chemo the first time (and probably each time in the game of how will I feel roulette.   )  Nothing to to be keep on keeping on.  Already filled in the days for every two weeks and have the projected last date of mid-August.  ONe day, one treatment at a time.

Starnge writing this because I know everyone here before me has had the same path to walk already.  I figure by the last treatment it may hit me that I had cancer, part of me is still outside looking in on it.  Maybe just a coping mechnism.

 

Hooked up

Chemo day went like a breeze for me. The nurses were absolutely fantastic. Busy, busy, but so friendly and caring. That really helped. I enjoyed talking with the other patients, as well. Some wanted to sleep or keep to themsleves, but others wanted to chat. That really helped pass the time, which for me was about four hours. 

I don't know if its a good thing or a bad thing to keep dates. I was terribly disappointed when my chemo was cancelled for low White and then platlettes. I hated that it put me back two more weeks at a time. Still, I think its human nature to want to see the end before the beginning. 

I remember being so excited when it was April, beause May was my projected finish date for the FOLFOX, and then I had three weeks off before my 24/7 5FU hook-up and Radiation. 

You have a good attitude and a good spirit, which will carry you through. I remember when Easyflip/Richard joined us here, and now he is looking back. Soon you will be looking back. Its good!

Sue - Trubrit

NewHere

Easyflip said:

I was

where you are now almost exactly 2 years ago. Your doc sounds very good. I had 10 and 1/2 infusions of oxy. They cut it out for my 12th because of neuropathy and blood counts. Funny how they say you only need 9 but they still do 12 all the time, oh well. The idea of chemo freaked me out of course but the reality of it wasn't too bad for me. Emend worked great for nausea and I didn't lose my hair. I had cold sensitivity and weird taste sensations but nothing I couldn't handle. I didn't like sleeping with the stupid pump, it made noise and I got wrapped up in the tube. Chemo can cause insomnia and I was given Ativan for it. I remember being very tired.

You're early in the process and I can imagine it all feels very surreal. I too was busy with the nuts and bolts of treatment but I do remember one specific night, in the dead of night, when it 'hit' me that I actually had cancer. I started to feel panic but then something odd happened. A very warm reassuring 'something' washed over me and calmed me. I'm not super religious or extraordinarily brave and the 'something'  could have been my own mind but I'm very grateful for it because I haven't been afraid since. It's actually been a pretty peaceful and happy last two years for me despite my further cancer trials. I hope the same or something similar for you. That night I found out I'm not afraid of dying and that's taken the wind out of feelings of fear and anxiety. If it is divine I'm completely grateful and if it's some primal protective brain thing I did I'm grateful for that too. It would suck to be afraid all the time.

Keep being funny, it helps. I'm a funny guy too : ) And you'll get a lot of attention, enjoy it! Good luck!

Thanks

Each and every story here means so much and really appreciate all of it. I was real impressed with the Oncologist, just a real nice guy and cared.  Completely reassuring, even gave my wife a hug and said don't worry at one point where she got a little upset'/teary eyed when going through this.  He said under worse case if it does crop up again, based on my overall general health (except for this one little issue ) they can take care of.  Go in, take it out, whatever.  I also liked that he said 9 only and that is what he will do.  Will keep Emend in mind (I have such a strange shopping list developing) because some good anti-nausea will be good to have.  The tubing in the hopsital makes sleeping difficult for sure, so I am going to have that happening.  But the said whatever this pump is, no motor or batteries, just a ballon which does it.  Maybe I misunderstood, but the bit of geek in me is curious to see how it works.   In the hospital Ativan was my buddy a couple of days.  Had it about three times when spasms set in.  I am gathering and organzing to have things handy for the tired/down times.  TV, comfortable couch set up, blankets.  Looking for some good mediatation music since everyone seems to indicate that can help.  In me trying to create lemonades from lemons, sort of of forced down and try to relax time, which I normally would not do.

Your description is spot on.  I was trying to explain it, particulary when a friend asked earlier today.  Something "How do people do this, go through this, I do not know if I can."  Told them I have no idea, I am a bit outside looking in on it as this plays out in front of me.  I do need to try to come up with a better description for those who have not been down this path, I think the rest of us get it without description needed.  And yes, the times that hit when "I have cancer" is whoa, what is this.  If I think about it too much it will paralyze me.  Of course I have to, but when it hits I move on somehow, back to "it is what it is, need to get past it."  I am more afraid of the pain rather than dying.  Not that I ready to die, and perhaps the fear will be great if it starts getting close, but more now the possible pain and the rest.  And even then it passes.  The surgery already has passed into more of a hazy memory (did pretty quick).  And when the chemo is done, that will become a memory.

Hey, is there is fast forward button so this can be the end of August and I am done?  

NewHere

Trubrit said:

Hooked up

Chemo day went like a breeze for me. The nurses were absolutely fantastic. Busy, busy, but so friendly and caring. That really helped. I enjoyed talking with the other patients, as well. Some wanted to sleep or keep to themsleves, but others wanted to chat. That really helped pass the time, which for me was about four hours. 

I don't know if its a good thing or a bad thing to keep dates. I was terribly disappointed when my chemo was cancelled for low White and then platlettes. I hated that it put me back two more weeks at a time. Still, I think its human nature to want to see the end before the beginning. 

I remember being so excited when it was April, beause May was my projected finish date for the FOLFOX, and then I had three weeks off before my 24/7 5FU hook-up and Radiation. 

You have a good attitude and a good spirit, which will carry you through. I remember when Easyflip/Richard joined us here, and now he is looking back. Soon you will be looking back. Its good!

Sue - Trubrit

Not Married To Dates

I can see how the postponments will really stink when they occur, I am guessing that will happen at some point for me also, maybe even on purpose.  

We were suppossed to have a family trip during this.  I asked the Dr and Nurse about the possibility of getting infection, maybe missing treatments and the rest.  Their response, without hesitation, was "go.  Enjoy things.  It is most important to be as normal as possible.  If we need to postpone a session a week, no big deal."  Obviously if something is really off I am guessing that is off the table, but they are coming at it from a positive angle, but without trying to sugar coat it.  They were really clear about the stats when I asked.  The chance of recurrance, the chance of recurrance with chemo, my 5 year projections.  But in terms of the fight against these little demon cells and living life, they are real good.

I keep on trying to keep the spirit up.  I am sure there are going to be down times.  As the old saying goes, perpare for the worst and hope for the best.  Plus I have a whole bunch of new friends here that I can lean on a bit as this continues.  I was able to help fellow patients already to some degree, so paying it forward