started apatone today, feeling good! has anyone tried this before?
just started a relatively non toxic treatment apatone. not heard it mentioned here much before. for more specific info on my apatone personal reactions, contraindications and scheduling with supplement interactions and dosaging checkout my blog.
so far so good, its only the first day.
I was referred to this by ashley my top integrative gp.
He reads my last years blood tests like the bible. He tells me what i have been doing, been eating and i can match my lifesytle around his comments.
He is giving me iv vitamin C. given my cost pressures he is not fussed if i get iv c somewhere cheaper.
Just found a nurse who lives close by who will get the iv c infusion started twice a week for free. Their is so much support around me, its humbling. I have found a few colorectal cancer patients/friends here and we are buying bulk vitamin c iv and artisiane 80 to get the costs down.
so this is a really affordable option for me at last. its been costing $150 twice per week, which is really starting to add up. no bad side effects so far. i mentioned this as its got some synergy with k3 actions
Just got my lost order for apatone, vit c and k3.
Started today with apatone which is k3 and vit c.
Dosage is 2 caps on rising, then 1 cap every two hours for 6 caps, then 2 caps evening.
so 10 caps per day. the treatment cycle is 12 weeks.
at $160 for 200 caps, thats 20 days supply. which is $8 per day.
so 12 weeks is 84 days which is a total cost $672.
I think i can the price down to about $400 for the 12 weeks.
If you interested just goto pubmed and search on apatone.
lots of good research and some promising trials, although for psa. from my reading it should have the same effect on cea rising.
its not chemo.
remember my onc and surgeon said their is nothing they can do until 23 january. well i have been pretty busy researching, purchasing and implementing a range of alternative treatment options, thats the understatement of 2011 and i am still here and hopefully not the crc.
just for the record, i am trying iscador, avemar, apatone, cimetidine. if these relatively safe treatments.
On the supplement side well heaps. but the most hope is in querciten which my crc cells seem to hate based on results from the rgcc test in this greek lab.
happy new year to everyone
hugs,
pete
ps this site is a great blog put together by a fellow crc survivor but actively fighting, its quiet inspiring, so i thought i would share it. he is doing some of the things i am trying.
http://cancereducationaustralia.com
Comments
-
5 hours and 33 minutes to go in 2011Sonia32 said:Has it hit new year yet down under?
Hey Pete if I'm right you have 5 more hours to go? :-)) I hope you have a great 2012, and thank you for all your postings so far on alternatives, you are csns resident alternative guru ;-)
god only knows what 2012 has in store for us.
i hope he is kind to us all.
we need a little help on forum 128.
despite the problems a few cells are causing me, its been a wonderful year with my family or should i say families, because that includes or csn family.
May 2012 bring us all better health.
hugs,
Pete
ps if i am resident expert then, god really does need to me and us. I am relying on his help.0 -
thanks tanstaafltanstaafl said:beyond (oral) apatone
We used oral vitamin K3 post 1st op 60-90 mg, 3x per week during IV vitamin C infusions. Oral 90 mg K3 in an hour during IVC was point of nausea for my wife, ca 62-67 kg. Was maintaining oral 45-90 mg MK4/day then.
its nice to think my doctors advice for me is also something you are trying and have experience with.
just have a great new year.
did you find any contraindications with k3 and other aspects of your protocol.
I will also ask ashley, my integrative gp if he has considered oral doses of k3 while i am getting my iv c infusion.
so you are off k3 now and back to k2 as mk4. i feel like we are speaking in codes now.
its really reassuring to have someone to post and reply to about these innovative. dare i say it bleeding edge treatments. that was a very very poor attempt at humour. I meant to say leading edge treatments.
did you measure ctc's or cea and notice any specific response with the k3.
hugs,
Pete
ps just found an amazing paper on lola and he and ohe.
if you understand those abbreviation i will fly over and buy you a beer for new years eve.
it may have some benefits for crc with liver impairment. i love the idea of leveraging the best treatments around the world to help us today. 2012 is going to be the best year for improving crc treatments.
http://petertrayhurn.blogspot.com/2011/12/liver-l-ornithine-l-aspartate.html
do you think lola should be a separate post here, the onc's will get me banned from this site if any patients ask about it. I am hooked up with the most amazing pharmacist. he just rights down the name of some amazing supplement/drug product and sends me off to do my research.
Just a day in the life of pete
http://petertrayhurn.blogspot.com/2011/12/daily-routine-updated-for-apatone-and.html0 -
complexitiespete43lost_at_sea said:thanks tanstaafl
its nice to think my doctors advice for me is also something you are trying and have experience with.
just have a great new year.
did you find any contraindications with k3 and other aspects of your protocol.
I will also ask ashley, my integrative gp if he has considered oral doses of k3 while i am getting my iv c infusion.
so you are off k3 now and back to k2 as mk4. i feel like we are speaking in codes now.
its really reassuring to have someone to post and reply to about these innovative. dare i say it bleeding edge treatments. that was a very very poor attempt at humour. I meant to say leading edge treatments.
did you measure ctc's or cea and notice any specific response with the k3.
hugs,
Pete
ps just found an amazing paper on lola and he and ohe.
if you understand those abbreviation i will fly over and buy you a beer for new years eve.
it may have some benefits for crc with liver impairment. i love the idea of leveraging the best treatments around the world to help us today. 2012 is going to be the best year for improving crc treatments.
http://petertrayhurn.blogspot.com/2011/12/liver-l-ornithine-l-aspartate.html
do you think lola should be a separate post here, the onc's will get me banned from this site if any patients ask about it. I am hooked up with the most amazing pharmacist. he just rights down the name of some amazing supplement/drug product and sends me off to do my research.
Just a day in the life of pete
http://petertrayhurn.blogspot.com/2011/12/daily-routine-updated-for-apatone-and.html
We initially used K3 after 1st surgery 3x/wk, after we started IV C, to help "hold the fort" until we could settle on a chemo option for "stage III". Vit K3 and N-acetylcysteine theoretically appear to interfere so we only did it on IV C days, and cimetidine might interact too. NAC + IVC has its own "good story". So we count more on continuous MK4 and lipoic acid with vitamin C, oral and IV.
While the pre-op "alternative neoadjuvant cocktail" (without IV C and K3) shrank the primary tumor, destroyed the mesenteric invasion and stopped the peritoneal invasion, the cocktail's effect on the (then unacknowledged) para-aortic lymph nodes is less certain, perhaps just a slowdown, too little data. Post op, my wife's tumor markers went down (at least faster) when we added the UFT and low dose folate/leucovorin (leucovorin is the correct choice, folate is ultimately toxic, the oncologists weren't cooperating on LV supply because they know nothing about CIM-UFT-LV-PSK and liked to sell Avastin even at stage III then, despite unfavorable results). Although the CIM-5FU data for stage III even without leucovorin was very favorable, I wanted leucovorin for insurance, as turned out to be the case.
Continuous low dose UFT-LV is best for stopping spread, slowing node growth. Our backup for any met mass is surgery. The surgeons' willingness and capability are crucial, because at stage IV, a lot of surgeons aren't willing, or as capable. Without surgery, one is left grappling with how to deal best with the mass. So jumping hurdles to find the "magic" surgeon with a track record and all the good answers is an early high priority but time consuming.
At 1st operation, the available CTC then appeared too insensitive for "stage III" and harder to get, my wife's CEA and CA19-9 respond to surgery and chemo. Just before the second operation, it took chemo and MK4 etc to stop the rise of CEA. CA19-9 reversed with stage IV dosing of UFT-LV and supplements until surgery. After 2nd surgery, the lab tests with live tumor tissue showed 5FU (UFT)-LV-MK4 as the most effective combination *for my wife's specific biology*. If we ever have to do irinotecan (presumably TegaFIRI with UFT), we might infuse -IRI low dose continuous every 24-36 hrs, preliminary trial results in Japan suggest good results with less toxicity.0 -
Happy new year, Pete-
and thanks for keeping us updated! Your posts are always very informative. I was just wondering if you've added anything to your supplements to address the loss of stomach acid with cimetidine that's been mentioned? I want to keep taking it but am a littel worried about that. Thanks! Ann0 -
thankyou, a lovelly reply to start 2012tanstaafl said:complexities
We initially used K3 after 1st surgery 3x/wk, after we started IV C, to help "hold the fort" until we could settle on a chemo option for "stage III". Vit K3 and N-acetylcysteine theoretically appear to interfere so we only did it on IV C days, and cimetidine might interact too. NAC + IVC has its own "good story". So we count more on continuous MK4 and lipoic acid with vitamin C, oral and IV.
While the pre-op "alternative neoadjuvant cocktail" (without IV C and K3) shrank the primary tumor, destroyed the mesenteric invasion and stopped the peritoneal invasion, the cocktail's effect on the (then unacknowledged) para-aortic lymph nodes is less certain, perhaps just a slowdown, too little data. Post op, my wife's tumor markers went down (at least faster) when we added the UFT and low dose folate/leucovorin (leucovorin is the correct choice, folate is ultimately toxic, the oncologists weren't cooperating on LV supply because they know nothing about CIM-UFT-LV-PSK and liked to sell Avastin even at stage III then, despite unfavorable results). Although the CIM-5FU data for stage III even without leucovorin was very favorable, I wanted leucovorin for insurance, as turned out to be the case.
Continuous low dose UFT-LV is best for stopping spread, slowing node growth. Our backup for any met mass is surgery. The surgeons' willingness and capability are crucial, because at stage IV, a lot of surgeons aren't willing, or as capable. Without surgery, one is left grappling with how to deal best with the mass. So jumping hurdles to find the "magic" surgeon with a track record and all the good answers is an early high priority but time consuming.
At 1st operation, the available CTC then appeared too insensitive for "stage III" and harder to get, my wife's CEA and CA19-9 respond to surgery and chemo. Just before the second operation, it took chemo and MK4 etc to stop the rise of CEA. CA19-9 reversed with stage IV dosing of UFT-LV and supplements until surgery. After 2nd surgery, the lab tests with live tumor tissue showed 5FU (UFT)-LV-MK4 as the most effective combination *for my wife's specific biology*. If we ever have to do irinotecan (presumably TegaFIRI with UFT), we might infuse -IRI low dose continuous every 24-36 hrs, preliminary trial results in Japan suggest good results with less toxicity.
I want to find a daring young Onc, my famous high profile Onc does not like to take risks with me, I am likely dead if stage 4 gets a hold at some point, I would like to defer that a few seconds at least. Maybe 109000000 seconds that is.
The blood tests on Monday to baseline lymphocytes I am excited about. Why not demand the best , and get lots of rest.
Did you check out Scott blog, he has been to Germany, Mexico. I hope he calls me, we both know bob, the worlds best compounding pharmastist0 -
thanks annannalexandria said:Happy new year, Pete-
and thanks for keeping us updated! Your posts are always very informative. I was just wondering if you've added anything to your supplements to address the loss of stomach acid with cimetidine that's been mentioned? I want to keep taking it but am a littel worried about that. Thanks! Ann
At the moment I chew chew chew, I want a great answer for the acid question. If you find it, maybe it will be answered in digestion 101.
If the topics discussed here, get discussed with Onc and surgoens they will at least get the message we are looking at ways we can help them help us. Ironically this may mean for some of us, getting out of the way. I never expected my Onc and surgeon to save me, just help as much as they can. I feel that the batton has been passed to the integrative care team. If you follow the analogy then I am the runner and I choose who I pass the batton to.0 -
I'm going to ask my naturopath-pete43lost_at_sea said:thanks ann
At the moment I chew chew chew, I want a great answer for the acid question. If you find it, maybe it will be answered in digestion 101.
If the topics discussed here, get discussed with Onc and surgoens they will at least get the message we are looking at ways we can help them help us. Ironically this may mean for some of us, getting out of the way. I never expected my Onc and surgeon to save me, just help as much as they can. I feel that the batton has been passed to the integrative care team. If you follow the analogy then I am the runner and I choose who I pass the batton to.
see what she can come up with. My oncologist is hopeless (if it ain't "national standard", he doesn't want to hear about it), so there's no point in discussing it with him. I'll let you know if she has any interesting ideas.0 -
i love it annannalexandria said:I'm going to ask my naturopath-
see what she can come up with. My oncologist is hopeless (if it ain't "national standard", he doesn't want to hear about it), so there's no point in discussing it with him. I'll let you know if she has any interesting ideas.
its not the national standard, its pretty well international.
potentially my suffering is lining someones pocket, no mine thats for sure.
my onc is not really interested, that why my lymphopenia has been ongoing.
guess who may have a recurrence to deal with.
my lymphocytes were depleted, those still around were probably wornout or alseep.
they did not identify this potential cancer cell early on in the game. damm same.
ask your naturopath.
do me a favour, play your cards close to your chest, see what the naturopath's recommend. tell them your story, symptoms, all the tests. and see what they say, what they don't say.
apply the same tough standard i apply to my onc, to the naturopaths.
regrettably they are all human, thats why second opinions and a bit of overlap i feel justified as i increased confidence and learn a bit more.
hugs,
Pete0 -
a little magic for us all, 2012 the year of magictootsie1 said:Worth a try!
I don't know anything about this particular treatment, but I sure do hope it will work some magic for you, Pete.
*hugs*
Gail
dear gail,
thanks heaps for the kind thoughts.
i am praying for magic.
hugs,
Pete0 -
Lori hard to say if it's helped. I feel great, look good, so yeslepperl said:apatone
How is the apatone working for you? I just started taking it for stage 4 colorectal cancer. I am using it in conjunction with Folfiri. Thanks Lori
I am on so many alts.
It's just another piece in the puzzle.
It's great for prostates, it's the synthetic of k2.
Not stopping it soon, I use prostay by Jonathon Wright, a fraction of what I wad charged originally.
I hope these help us. Thanks for asking. So few here try my bag of alts.
It's nice to find somewhere are advised, the same as me. We come to the same treatment via different paths, and we can share it here.
My big cancer alts are artemisinin, slforaphane, mcp, turmeric, vit c iv.
Apatone is one of my supporting players .
Hugs,
Pete
Ps I hope you are well and today is great for you0 -
thanks pete for the quickpete43lost_at_sea said:Lori hard to say if it's helped. I feel great, look good, so yes
I am on so many alts.
It's just another piece in the puzzle.
It's great for prostates, it's the synthetic of k2.
Not stopping it soon, I use prostay by Jonathon Wright, a fraction of what I wad charged originally.
I hope these help us. Thanks for asking. So few here try my bag of alts.
It's nice to find somewhere are advised, the same as me. We come to the same treatment via different paths, and we can share it here.
My big cancer alts are artemisinin, slforaphane, mcp, turmeric, vit c iv.
Apatone is one of my supporting players .
Hugs,
Pete
Ps I hope you are well and today is great for you
thanks pete for the quick reply. I also am using prosstay as my version of apatone. Obviously it won't be doing anything for the prostate I don't have (lol) I did research and came up with this one on my own. Really sad the apatone development center is literally at my back door and my Dr will not get it for me. So I ordered prosstay and take enough to get the recommened apatone dose. I am also using lots of alternative stuff with the chemo but my two latest add ons are the apatone and essiac tea. I don't know if it working but I know I feel fantastic. If I have any success with anything I will let you know and I hope you will do the same. I am not in denial. I know our diagnosis really stink but I will never surrender. One day someone is going to find the recipe to cure this. I think if we all keep sharing our stories one day we will figure this out. Good Luck with your treatnets. wishing you the best. Lori0 -
thanks pete for the quickpete43lost_at_sea said:Lori hard to say if it's helped. I feel great, look good, so yes
I am on so many alts.
It's just another piece in the puzzle.
It's great for prostates, it's the synthetic of k2.
Not stopping it soon, I use prostay by Jonathon Wright, a fraction of what I wad charged originally.
I hope these help us. Thanks for asking. So few here try my bag of alts.
It's nice to find somewhere are advised, the same as me. We come to the same treatment via different paths, and we can share it here.
My big cancer alts are artemisinin, slforaphane, mcp, turmeric, vit c iv.
Apatone is one of my supporting players .
Hugs,
Pete
Ps I hope you are well and today is great for you
thanks pete for the quick reply. I also am using prosstay as my version of apatone. Obviously it won't be doing anything for the prostate I don't have (lol) I did research and came up with this one on my own. Really sad the apatone development center is literally at my back door and my Dr will not get it for me. So I ordered prosstay and take enough to get the recommened apatone dose. I am also using lots of alternative stuff with the chemo but my two latest add ons are the apatone and essiac tea. I don't know if it working but I know I feel fantastic. If I have any success with anything I will let you know and I hope you will do the same. I am not in denial. I know our diagnosis really stink but I will never surrender. One day someone is going to find the recipe to cure this. I think if we all keep sharing our stories one day we will figure this out. Good Luck with your treatnets. wishing you the best. Lori0 -
thanks lori, sweet replylepperl said:thanks pete for the quick
thanks pete for the quick reply. I also am using prosstay as my version of apatone. Obviously it won't be doing anything for the prostate I don't have (lol) I did research and came up with this one on my own. Really sad the apatone development center is literally at my back door and my Dr will not get it for me. So I ordered prosstay and take enough to get the recommened apatone dose. I am also using lots of alternative stuff with the chemo but my two latest add ons are the apatone and essiac tea. I don't know if it working but I know I feel fantastic. If I have any success with anything I will let you know and I hope you will do the same. I am not in denial. I know our diagnosis really stink but I will never surrender. One day someone is going to find the recipe to cure this. I think if we all keep sharing our stories one day we will figure this out. Good Luck with your treatnets. wishing you the best. Lori
its nice to share my faith in alternatives with other believers and not to bare the brunt of criticisms about treatment options i have faith in.
so thanks heaps, its put a smile in on dial.
saw my onc today, see does not want to see me for 3 months.
just another cea test in a week.
nothing on offer, i said i am at work, still doing vit c, which she says is a waste of money.
conflicting opionions about treatments is just to be expected, its taken me awhile to come to terms with this and not get stressed, or feel the need to defend my position or convert anyone else.
if i find the recipe i will post it here. here is hoping. maybe hope is the key.
because without hope everyday would be bleak with this cancer monkey on our back.
yes our diagnosis stinks on one hand, but for me, i have many dead friends, so i take my current health with gratitude.
goodluck with your treatments also. i found out about apatone from my top alt doctor. been on it since december 2011. looked into back then, its not something i have the energy to checkout again at present.
hugs,
pete0 -
thanks glinka, its so good to have friends hereglinka65 said:pete
i would love info on this my friend!!! I BELIVE ME ARE ON PM MESSAGING, SEND ME ANY INFO, THANKS MY FRIEND1
http://www.medsci.org/v05p0062.htm#headingA4
its best to google apatone, some interesting links come up straight away.
i have no regrets trying this, its not recommended or indicated for colorectals, but hay it might stop me getting prostrate cancer, and given all the radiation i had thats a good thing to avoid.
i would be seriously pissed to beat colrectal and then to die from prostrate cancer.
but then i just found this.
http://www.informedinvestigator.org/articles/details.php?unid=237
this one is interesting......................................
thanks for asking, i learn more when i have to do research to answer good questions.
oh the skeptics will have a field day with this, gee it costs about $10 a week. some conartist is making a small fortune out of all the apatone sales. i am being sacrastic, yes a very very small fortune.
of course my onc says all this is an absolute waste of money. she maybe right.
i just love seeing her smile and lecture me, she knows it will do no good. i think to myslef, i am alive. just how sweet that is. you are alive, we all are. i just hope we all get as many great days as gods allocated to us.
i am really proud of my crazy regime, and its getting bigger and bigger. i think any cancer cells will soon just pack up and go find someone else to annoy. its way to hard for them to exist in my body. even my dreams are anti cancer. goto get that subconscious doing something while i am resting.
of course get professional medical advice, good luck finding it though. i used to get apatone with a scipt for $168 per month, then jonathon wright started doing his for about $40 per month, avail on iherb and no script. that i found very easy and the prostay does not need to be regfrigerated.
hugs,
pete
i found this on my messy blog, even back in december the research looked worthwhile.
but i am such an alternative ****, i mean i am so easily convinced.
http://petertrayhurn.blogspot.com/2011/12/apatone-for-new-year.html
this has pretty pics, i did not follow most of this, but my top alt doc liked it, and so i just did it and have FAITH!
http://www.formatex.info/microscopy4/211-220.pdf0
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