It Is Official: Stage IIIC and FOLFOX Starting Soon

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.

 

 

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 )

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 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.

 

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