CSN Login
Members Online: 5

first day chemo since 14 april 2011, fasting today, praying, crying and smiling

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

still recovering removab, up all night to the bathroom getting over it. just like reconnection poos. my bp dropped to 60/30/60 which is about as low as one should go, so the treatments take you close to the edge here, which is what i want.

so subject to bp and liver enzymes bouncing back i should be on low dose systemic chemo this afternoon . i have tried so hard to avoid chemo this last 10 months, no chemo has been offered anyway until 6 weeks ago, so i have

its 4am, so i have decided to fast , remember the discussions about fasting before chemo.
i cannot sleep, all these unanswered questions i have for the clinic here, still unanswered after 3 weeks are stressful, i have confidence in the clinics strong points but have not had the care i expected regarding diet, supplements,homeopathics and off label drugs. still i am at the best clinic i have access to and the doctor copic is inspiring, i have confidence in him, its a shame the clinic board dont provide all the medical support that is required for large groups of aussie patients arriving on mass with diverse needs.

so the research continues,

http://mct.aacrjournals.org/content/9/4/996.full discussion interesting vegf.

if anyones got some good metronomic colorectal references i would like to study them.

hugs,
pete

Lovekitties's picture
Lovekitties
Posts: 2995
Joined: Jan 2010

You sound kinda down in this post. I expect that the low bp and stress the chemo is putting on your body are part of the cause.

You may have had higher expectations regarding diet, supplements, etc. from the clinic, but hopefully their care regarding these things is in line with what your doctor wants in conjunction with your treatments.

You mention fasting...I sure hope you checked with your doc about this. Your body is taking a beating and now might not be the right time to deprive it of nutrition and cell building foods.

Be a good "boy" and listen to the experts. Their experience and knowledge and best instincts are what you are paying the big bucks for.

Hugs and prayers coming your way,

Marie who loves kitties

janie1
Posts: 753
Joined: Apr 2011

Hey there, Pete.
I wouldn' t get too hung-up on supplements right now. They are important, but right now that is just a blip on the radar screen.
You need to see what removab (sp?) does and whatever the current german docs want to do.
Best thing to do...relax, meditate. That will help the BP anyway.
You need to let this work. And i hope it helps a whole lot.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I was feeling down, no sleep for a few nights and some dex, well its not a good combo for me.

i am being a "good boy", feeling human again almost.
i hate dex, i have been infused all day with lots of supports.
good old immodium has also worked wonders.
so no chemo today, in a few days when i have stabilised.

i have to stop clutching at straws, the plan from the onc is a pretty solid.

my entire regime is on hold, all the treatments here take priority, i get most of my key nutrients from the amazing food here. i have gained 8 kg in 3 weeks. so i am getting ready for hipec and peritonecomy if still needed.

time will tell.

hugs,
Pete

lauragb
Posts: 368
Joined: Aug 2011

Hey Pete, I understand your being down starting in another leg of the journey.
I'm glad you have the expertise of such a good center. I always wish for more integrated holistic treatment too but it seems it is hard to find. Here's to doing well and finding NED at your door again.

Sending light your way.
Laura

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

Best of luck to you Pete as you start this latest venture...
I don't know about not eathing and fasting.. I seem to feel better eating than not..
But please do what the drs tell you to..

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I wish you wonderful results in your treatment Pete! I suggest you to eat anything you wish , that's always healthy ! LOL..
Lots of hugs my friend!

Kathleen808's picture
Kathleen808
Posts: 2319
Joined: Jan 2009

Pete,
I just want you to know I am thinking of you my friend and hope you are doing OK back on chemo. You are a strong and amazing man and my hope is that the cancer will just stop growing and be gone. You have worked hard.

Aloha,

Kathleen

wolfen's picture
wolfen
Posts: 1213
Joined: Apr 2009

You just "hang tough", my friend. Build up that strength and then "kick a$$". I know you can do it.

Luv Ya,

Wolfen

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

if you got to be stuck with a challenge, and a few wandering, sneaky colorectal cells certainly count as a challenge, the biggest in my life. well anyway having supportive friends here is just essential. i am awake, feeling great. i suspect i will get the delayed chemo and hyperthermia from yesterday.

steve colocan provided the link below, i have this printed on my new onc desk.
he also provided the link for the free kindle defeat cancer 15 doctors. a good read at least the intro about whats wrong with evidence based medicine and whats good about personalised targetted therapies. the scary aspect out of that book is that the mets have different onco genes, as we all know anyway.

http://www.cancernetwork.com/colorectal-cancer/content/article/10165/2107224

i am just so lucky to be a part of this community, some great science from steve, some great support for everyone else.

for my part i am committed to sharing honestly my journey, it may help some.

hugs,
Pete (the aussie guinea pig in germany )

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

hang in there! i can only imagine how rough these tx are but i know you will make it! it is natural to have emotional downs. to deny them is not good because i know yours' will be a short time. be sure you eat good! now that is an order!!! get your rest & think what is behind you & what an accomplishment!
big hugs & prayers from indiana to germany
judy

lesvanb's picture
lesvanb
Posts: 908
Joined: May 2008

Thinking of you lots; yes I agree it's hard doing chemo after working hard to avoid it. Here's to this chemo working for you right now.

all the best, Leslie

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hi Pete,

Just "Minnesotagirl" letting you know I pray for you everyday that I walk ~ which is everyday! You keep your spirits up and stay positive. You are strong, stubborn and knowledgeable. What more could a guy ask for, right? Eat well, think positive, and most of all remember all of us are sending you positive thoughts and prayers.

annalexandria's picture
annalexandria
Posts: 2322
Joined: Oct 2011

Hoping the chemo hasn't been too hard on you. I know it must be tough starting it up again after such a long break. Hugs coming your way from Seattle~Ann

tanstaafl's picture
tanstaafl
Posts: 1014
Joined: Oct 2010

Do they have tegafur-uracil in Germany? Using that as a daily 5FU backbone is about as metronomic as you can get. (various brand names including UFT)

Most of the continuous stuff, "metronomic", is either stage III straight UFT withno leucovorin (LV) or animal model. Next closest UFT metronome is the 5 days on UFT, 2 days off version, with or without LV. In principle, it becomes very difficult for metastasis to occur in the continuous presence of molecules like 5FU-tegafur, cimetidine (if applicable), COX2 inhibitors. The clinical trials mentioned here sound like a toe in the water toward a multicomponent metronomic protocol. One mistake most protocols make is too much LV and/or folic acid for long term use. Some interesting work has been done on tegafox / tegafiri regimes.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

much better now, been away at conference baden baden, see the friday post for details.
on chemo an hour ago, 24 hours mitomycin very low systemic dose, should have persitent effect 2 weeks claims newest onc. no disabling immune at this dose, not even focused anti angiogenisis, purely anti ctc to stop met potential.

removab to do tumour cleanup. pet planned in a month.

next monday final removab. note 3 consectutive removab has synergy with immune response!

following week more embolization, the bigger the break the more time for local avastin/mitomyin

hugs,
Pete

ps had another shot stem cells tonight to boost my immune system, that a series of 12 shot over 3 weeks, its working!

steved
Posts: 836
Joined: Apr 2004

Is interesting to follow your progress pete as it differs from so much we know. Would be interesting if you could spell out you regime as a whole at some point- how many cycles of removable etc are you having in total and what other drugs/ supplements are being prescribed.

Hope you are keeping well

Steve

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

hi steve,

its just great to have you back here mate!

i will post, all the therapies. but the key stuff is on the blog.
the therapies here are focused on keeping you alive while getting removab into you and managing the side effect. phil was great explaining and finding the possible sides.

i am 4 hours into an 8 hour infusion of removab, my blood pressure is falling slowly , they are keeping me hydrated with fluids to boost it, soon my temperature will start to rise.

i will be off the planet for a few days as removab kicks in.

hugs,
Pete

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network