i am excited FOLFOX 10 tomorrow! bag removal planned.

pete43lost_at_sea

Lori-S said:

YAY Pete
I am so excited for you to be doing so well on FOLFOX. Of course I know you've had the side effects but, overall you are doing so well and getting so close to being done. Seems the FOLFOX club sort of dwindled down with some of us having severe reactions or side effects (like myself). I guess this makes you a better man than me?? hahahaha

Just to let you know, Louswift is scheduled for his #12 next week. I know he is looking forward to that last disconnect as I am sure you are too. I am now in my 7th week after stopping FOLFOX and now more aware of what longer term effects are left. The toughest part for me right now is feeling so much better and not being able to do much because I'm in wait and see limbo of sorts. It makes it tough to make any kind of plans because I'm not sure what the cancer plan is just yet. I am fighting with my desire to go back to work and saying forget this stuff. That's how good I'm feeling but also how frustrating it is to have to wait. I hope you feel super good when you are done with the FOLFOX. I'm sure you will ... and how about that bag removal .... there's a cause for celebration too!

the club will be back
dearest lori,

we just have so many newbeies coming here, it may not be our FOLFOX express train ride is finsihed but I bet for others the 2011 express just departing the station, "all aboard" I hearthe oncs saying. In in the future when FLOFOX retires will come another equally challenging chemo therapy.

I am watching the sun rise, not stunning, overcast, its another lovelly day.

don't fight with you desire in anything, your desire is the trigger for subconsious mind to kick your cancer in the arse and bloody hard as well. If you snooze you loose, if you well enough to go to work then give it a try. Whatever turns your dial. so you get sick and have to stop, at least you tried.

And you never know if you follow all the super healthy secret stuff us on the dark side of the board do you may actually kick back in the office. I do hope so.

I am going to have the best time in fiji. booked.

In September I am off to PNG for 4 weeks diving, booked.

I pay small deposits, lock all the airfares and stuff in and then just take it easy.

If I loose money on prepaid holidays I just think to myself, easy come easy go. And aks the wife to work abit harder.

We can all celebrate together, we are alive today and have so much to be joyful for.
At least none of us was visiting poor Japan.

hugs,
Pete

LOUSWIFT

congrats
Hi Pete
I don't post much anymore since my hands are a mess but have been reading. I will have my last folfox #12 in 6 days forever. Regardless of outcome I will never due chemo again...twice is enought. I didn't really have a reoccurrence(R)rather I developed a completely new cancer with different pathology then my original. Still in the colon but a good distance away from the original again a stage IIIC. My ONC believes I have been cancer free since last August post surgery but did the chemo as preventative. My CEA has remained around 1 since surgery. So I am hopeful my CT scan will be clear in a couple of months then they will take out my port too. I can't believe I am going to have treatment #12 in just six days and unplugged in 8 days. I honestly didn't think I would make it this far. My side effects this time have been a little less worst than normal but eating any thing has become a real problem. No matter what everything tastes repulsive. Good news is I still have 10 maybe 20 lbs of fat to live off for a while. My muscle is already gone. I wish you the best in beating the beast that seems to stalk us. Lou

CherylHutch

pete43lost_at_sea said:

pay peanut get monkeys
hi cheryl,

Its just my opinion but my onc has spent lots of time with me need really needed. she has got me expensive scan for using her contacts and knowledge of the system. she is the chair of our colorectal association. she is into a couple of clinical trials and is in a select group of top onc that have very good relationship with drug companies. she obtained my oxalipplatin on compassionate grounds as its not covered under our pbs for rectal, only 5fu is. so she saved me $26000 over six months just by her relationship and a dam email. how lucky. me friend seeing a public hospital onc was offered 5fu alone and he had a more aggressive rectal cancer than mine. she writes the trials, she conducts them and reviews them. so I count myself lucky to a caring, well connected onc. she also got my into see the shrink with wife, so we have had some couple theraphy support along the way as well.
the other thing is better access to appointments, more frequent if needed and at times that suit and immediate answers to questions.

different systems public and private, I thought the extra money gets me appointments that work, top class scripts that other have to pay for. more access to pet scans. like she suspect liver involvement, so I qualified. that suspicion alone saved me $1000. i was clear as a bell.

every hospital is different here with different charges, its still a good system but dam it you go to milk it carefully to get the best care. you still get good care if you don't.
its strongest point is doctor choice. I feel sorry for the sick not able to push the system when most need it. It clear to me, the best care the best chance. Only my opinion.

what did she do for $175 for 15 monutes? she smiled, i know I know for that kind of doe.
she cared advised and said BAG OFF and PORT OUT. best $175 I spent in a long long long time even if its length was short. one senario where "size does not matter" .

fiji will be fun. I hope to dive but will see how the reconnect is going. I got 2 months between reconnect and fiji. I hope its enough. I may have to buy some nappies. hahaha!!!

love Pete

Different systems
Pete... I'm not saying you are or aren't getting good care... or hopefully, that your care isn't better than someone who is on the Australian national healthcare system. What I was pointing out is that *I* THOUGHT our two healthcare systems were similar because of the government subsidized systems, making them affordable to all. But obviously, I was wrong... you are paying extra, out of pocket money, to get better (or different) care than someone who can only afford the affordable healthcare.

Again... comparing the two systems. My onc is also highly thought of, is involved with clinical trials and research out of the hospital system (Vancouver General Hospital Research) and the university (UBC). She, also, can get protocols extended based on her knowledge, expertise and her position in the oncology world. Every chemo protocol I've been on, it's been because she's ordered it and as an expert in her field, she fine tunes what she thinks would be best for me (and fine tunes individual plans for all her patients). As for appts., I didn't know here was such a thing as a patient not being able to have access to their onc (although I have heard some mention that here from the US). We have regularly scheduled appts long in advance, but IF I should need to see her sooner than a scheduled one, it's just a call to her office and they arrange it. LIkewise, with my GP. On Friday, I figured I should have someone look at the rash on my head since it was the weekend and better have it looked at before it got worse. My GP's receptionist asked where I was when I called and I said I was running errands and only about 3 blocks away. She said come on over as soon as you've finished your errands. Why didn't I call my onc to have her look at it? Because she's in China at an oncology conference and won't be back until this week. As for doctors/oncologists... yep, I could change mine if I felt there was a need... but why would I when they are all fantastic? I've had no complaints and have always been impressed with the topnotch care I've gotten.... and no, it doesn't cost me anything extra out of pocket. Anyone else living here would get the exact same treatment... they might have a different onc and a different medical team, but the care would still be wonderful. I have talked to others around here and they all rave about their oncologist as much as I do mine... surely they all can't be perfect?? And yes, National Healthcare doesn't mean you can't pick your own doctors. You can pick whoever you want and if you end up not seeing eye to eye with them, then you can find another.

Anywho... no big deal, I'm just really, really surprised because in talking with other Aussie friends, it sounded like both Australia and Canada had very similar healthcare plans. But from what you are saying, then I must have misunderstood my other friends. One of the things my other Aussie friends did say is that if you don't have a family doctor (GP?) then it is very hard to get one because most of them are not taking new patients. That is not so different here. I've had the same family GP since I was 21 so I have not been on the lookout for a new one... but friends who are new to BC, coming from other provinces, have had a heck of a time finding a doctor who is taking on new patients. If they can't find one, then they take their occasional ailment to a walk-in clinic. They still can choose whichever doctor they want... they just have to choose one that is taking new patients But anyone who is diagnosed with Cancer, they will automatically get an oncologist, and that oncologist will put together a team of every doctor/specialist the patient needs. I certainly do understand peoples' frustrations if they can't find a family doctor.

Anywho... just interesting how a discussion about something else brings up these little gems... I learn something new every day!

Cheryl

pete43lost_at_sea

AncientTiger said:

Free at last!!!
That's what you're going to be hollering the first time you look down and see that bag missing. I know..... that's exactly what I did.

For me, the hardest part of all I've been through was the constant annoyance of that damned bag. Rolling over in bed at night and constantly checking to see if "baby needs changing". Embarrassing moments at work. Constantly looking at things that the Good Lord designed your body to keep you from having to look at unless you just wanted to.

My surgeon and onc agreed a TWO week recovery after chemo would suffice, and I darned near kissed them both. That was likely more to do with how well I managed the chemo though..

But, to throw a little rain on your parade Pete, there will be several weeks worth of recovery after the take down. Both the surgery area and your body getting back into the swing of things.

For me, it was two or three weeks to recover from most of the surgery, but getting back to "normal output" has been a little challenging. There was quite a bit more pain than I thought there would be, and it's not gone yet (my takedown was in November 2010).

Would I opt to keep the bag instead of having painful discharge? HELL NO!!!! It's worth it to me. And odds are that it will eventually go away.

Now if only I could find a way to get rid of this neuropothy in my hands and feet...although I may be onto something with the hand "tinglies"... have been playing a LOT of Mortal Kombat on my PS3 the last couple of weeks, and by gosh, I think my hands are actually BETTER! Could be just normal recovery, or maybe the hyper-stimulation of using that game controller, or maybe both. LOL

Keep the faith Pete... good things are in store

"THANK GOD ALMIGHTY FREE AT LAST",
hi ancienttiger,

cool name.

I thanks for reminding me about the reconnection joys. I'll see about the two weeks, I guess the post chemo delay is to do with our general health, the chemo we are on and our bloods etc.

"THANK GOD ALMIGHTY FREE AT LAST", yes the lovelly words. the bag and port off symbolise survival. I have been on a naturally high since meeting the onc. The infused dex at chemo yesterday also helped.

going to have some ativan and dex for breaky now. should be a bit more out their soon, but will finish my posting before I get any more radical thoughts that I completely blame on the DEX.

Neuropathy cure ( maybe not ) put a bowel of hot hot water, poor in a bad white wine equal volume. dip feet and hands alternatively. This was told to me a secret chinese cure by naturopath whose husband is into chinese herbal medicine.

I have not tried it, but will now as I have let the cat out of the bag so to speak.
I know it sounds strange, my reaction to, but if it works for before of us we could write a book about miracle cures HAHAHA.

I have also been walking along the beaches, in and out of the water, on sand, stones, rocks and shells. I still feel pain and the different surfaces so the numbness is not chronic. Helping minimise the nerve damage may come down to use it or loose it. trying to stimulate the nerves may help. Maybe pulling things out of the fridge without gloves and getting the pains may be beneficial in some perverse way, just maybe. any other comments or neuropathy treatment tips ?

keeping the faith and thanks,

Pete

pete43lost_at_sea

herdizziness said:

Oh My Gosh Pete
How WONDERFUL!! I am so happy, happy, happy for you. Happy Dance Time!!!
Winter Marie

Happy dance time
Next party I'm dancing.

pete43lost_at_sea

AnneCan said:

Go Pete go!!!!

Go Pete go!!!!

I am giving this game of life my best shot
Go anne go as well!!

hugs,
Pete

pete43lost_at_sea

LOUSWIFT said:

congrats
Hi Pete
I don't post much anymore since my hands are a mess but have been reading. I will have my last folfox #12 in 6 days forever. Regardless of outcome I will never due chemo again...twice is enought. I didn't really have a reoccurrence(R)rather I developed a completely new cancer with different pathology then my original. Still in the colon but a good distance away from the original again a stage IIIC. My ONC believes I have been cancer free since last August post surgery but did the chemo as preventative. My CEA has remained around 1 since surgery. So I am hopeful my CT scan will be clear in a couple of months then they will take out my port too. I can't believe I am going to have treatment #12 in just six days and unplugged in 8 days. I honestly didn't think I would make it this far. My side effects this time have been a little less worst than normal but eating any thing has become a real problem. No matter what everything tastes repulsive. Good news is I still have 10 maybe 20 lbs of fat to live off for a while. My muscle is already gone. I wish you the best in beating the beast that seems to stalk us. Lou

well done Lou, I know the joy you feel
Dear Lou,

this is so strange, we sign up to folfox to give us the best chances our modern western medicine can give us. And for something thats supposed to be saving lives, we are just so overjoyed to get off it.

I hope the hands and feet improve for you. I even want me to improve also.

best wishes Pete

CherylHutch

unknown said:

This comment has been removed by the Moderator

Have to clear up a few points
Hehe Graci... just a few points I have to clear up since you mentioned me as having said them... and that's how rumours get started .

>> You said she got you the Oxi on compassionate grounds. (I have heard Cheryl speak of this too)

Nope... not me Oxi is a standard chemo that can be given in combination with others, the most common is FOLFOX (5FU + Oxi +Leucorvin). That is readily available in Canada and given as a standard protocol for colorectal cancer.

You may be confusing it with Avistan. I believe it is the Province of Ontario and one or two of the Maritime provinces that don't recognize it with some cancers or some treatments, hence those provinces' ways of paying for chemo are not paid for by the province (or the Cancer Ontario). I'm not sure... Maglets and AnneCan could give more information about this and whether it has to be paid for out of pocket. They can still get it, but it might not be covered for full payment by Healthcare or Cancer Ontario.

Avistan is available in BC but I've heard depending on which Health district you live in... in some areas there is a cap (26 treatments?) whereas in other areas there is no restriction. Again, I think that all depends on the Cancer Agency and how much funding they get.

Oh... now that I think of it... the "compassionate grounds" came up when AnneCan went in for her chemo and it was called off because it hadn't been approved yet. So someone was mentioning having the insurance give it on compassionate grounds if they were thinking of not approving it. That became a moot point because they did approve it so there was no need to fight for it

Cheryl

pete43lost_at_sea

unknown said:

This comment has been removed by the Moderator

lots of good questions thanks
dear graci,
my friend had one 5fu, jumped on folfox next cycle, is seeing my onc for a second.
his hospital offered him somwthing different he has to $4000 all up approx. here treatment is differnet per onc and hospital and if public or private. so frustrating, but at least if you push you can get whats best. but you have to be a pusher/dealer and play the onc/hospital/drug company politics games.

medicare is our national system, its similar to canadian in some respects. ie folfox is approved for colon but only 5fu for rectal as per effecious clinical study results. Our government says no proof, no money for the drug which I guess of fair enough.

I paid $1000 for the 5 day cancer retreat, but I did ask and recieve a discount of $750 because our incomes qualify us for limited governemnt assistance.

Our governments need to improve but god thats a hard problem. where do we start ?
For me healthier families especially kids.

I will be grateful to get some "kerry luck" with all things. Maybe its not luck graci, it could be the "A" word he seems to type all the time.

Graci drive baby drive, goto to the tcm herb friendly cancer center. I don't even have that. If I walked in with a pot of chinese tea, they'd throw me in gaol.

I'll PM my email, can you send that to me as well. the tcm and herb stuff. You may have stumbled across some gold I think. I hope your old onc opens his eyes. but don't hold your breath waiting for an old dog to learn new tricks. we need to get this stuff into all teaching hoospitals asap.

great questions.

Pete

pete43lost_at_sea

unknown said:

This comment has been removed by the Moderator

lots of good questions thanks
dear graci,
my friend had one 5fu, jumped on folfox next cycle, is seeing my onc for a second.
his hospital offered him somwthing different he has to $4000 all up approx. here treatment is differnet per onc and hospital and if public or private. so frustrating, but at least if you push you can get whats best. but you have to be a pusher/dealer and play the onc/hospital/drug company politics games.

medicare is our national system, its similar to canadian in some respects. ie folfox is approved for colon but only 5fu for rectal as per effecious clinical study results. Our government says no proof, no money for the drug which I guess of fair enough.

I paid $1000 for the 5 day cancer retreat, but I did ask and recieve a discount of $750 because our incomes qualify us for limited governemnt assistance.

Our governments need to improve but god thats a hard problem. where do we start ?
For me healthier families especially kids.

I will be grateful to get some "kerry luck" with all things. Maybe its not luck graci, it could be the "A" word he seems to type all the time.

Graci drive baby drive, goto to the tcm herb friendly cancer center. I don't even have that. If I walked in with a pot of chinese tea, they'd throw me in gaol.

I'll PM my email, can you send that to me as well. the tcm and herb stuff. You may have stumbled across some gold I think. I hope your old onc opens his eyes. but don't hold your breath waiting for an old dog to learn new tricks. we need to get this stuff into all teaching hoospitals asap.

great questions.

Pete

waterlog

pete43lost_at_sea said:

well done Lou, I know the joy you feel
Dear Lou,

this is so strange, we sign up to folfox to give us the best chances our modern western medicine can give us. And for something thats supposed to be saving lives, we are just so overjoyed to get off it.

I hope the hands and feet improve for you. I even want me to improve also.

best wishes Pete

congrats Pete
good for you Pete!! I hope to be in a similar state of mind in eight months or so. I finished my radiation/chemo 4weeks ago and surgery end of april. (stg 3)
Putting a crimp in my diving style so Im sneaking in 2 weeks in Bonaire just before surgery! Ill blow some bubbles for you
Bruce

AncientTiger

pete43lost_at_sea said:

"THANK GOD ALMIGHTY FREE AT LAST",
hi ancienttiger,

cool name.

I thanks for reminding me about the reconnection joys. I'll see about the two weeks, I guess the post chemo delay is to do with our general health, the chemo we are on and our bloods etc.

"THANK GOD ALMIGHTY FREE AT LAST", yes the lovelly words. the bag and port off symbolise survival. I have been on a naturally high since meeting the onc. The infused dex at chemo yesterday also helped.

going to have some ativan and dex for breaky now. should be a bit more out their soon, but will finish my posting before I get any more radical thoughts that I completely blame on the DEX.

Neuropathy cure ( maybe not ) put a bowel of hot hot water, poor in a bad white wine equal volume. dip feet and hands alternatively. This was told to me a secret chinese cure by naturopath whose husband is into chinese herbal medicine.

I have not tried it, but will now as I have let the cat out of the bag so to speak.
I know it sounds strange, my reaction to, but if it works for before of us we could write a book about miracle cures HAHAHA.

I have also been walking along the beaches, in and out of the water, on sand, stones, rocks and shells. I still feel pain and the different surfaces so the numbness is not chronic. Helping minimise the nerve damage may come down to use it or loose it. trying to stimulate the nerves may help. Maybe pulling things out of the fridge without gloves and getting the pains may be beneficial in some perverse way, just maybe. any other comments or neuropathy treatment tips ?

keeping the faith and thanks,

Pete

Think I'd just drink the wine
Soak the feet in water, and try to invent new, super violent moves in mortal kombat... but appreciate the tip anyway

I've never actually heard or read anything about nerve stimulation as a possible aid to ridding chemo-neuropathy, but it wouldn't surprise me in the least if there were some scientific basis to it... it's sure seeming to help ME at least... I was able to button the top button on my uniform shirt without looking today! I haven't been able to do that since March 7th, 2010 (I can recall that so precisely 'cuz that was the day before I went into the hospital, and I was on duty).

Like you Pete, I had them remove my port as well. My feeling was/is that I've had enough artificial crap in me and on me for the past 8 months+ that I'm ready to be "All Natural" again

pete43lost_at_sea

waterlog said:

congrats Pete
good for you Pete!! I hope to be in a similar state of mind in eight months or so. I finished my radiation/chemo 4weeks ago and surgery end of april. (stg 3)
Putting a crimp in my diving style so Im sneaking in 2 weeks in Bonaire just before surgery! Ill blow some bubbles for you
Bruce

bruce dive dive dive
Hi Bruce,

welcome aboard the folfox express and to this wonderful board. its got a few amazing characters.

I went away on a last diving fling as well on the 1 october2010 for a long weekends diving a few days before the op.

Enjoy bonaire and blow some bubbles for me.

I hope your op goes well.

cheers,

Pete