Some fantastic news to share!

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Comments

  • coloCan
    coloCan Member Posts: 1,944 Member
    PhillieG said:

    Great News!
    From your Head to your Toes, it sounds like it's all good news...
    Keep it up Pete!
    -p

    i think its up to us to educate our docs (as well as ourselves)
    If you consider how much time our docs spend at their "practice" on a daily basis, all the stories they hear,stuff they see, stress,sorrow,etc and then if they have a family to tend to when they get home, where do they get the leisure to keep abreast of the never-ending flow of research being published?

    As for knowledge being power--thats only true if that knowledge is acted upon.....just don't get paralyzed into inaction due to too much knowledge.

    Wish i had your energy!!!!!
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    coloCan said:

    i think its up to us to educate our docs (as well as ourselves)
    If you consider how much time our docs spend at their "practice" on a daily basis, all the stories they hear,stuff they see, stress,sorrow,etc and then if they have a family to tend to when they get home, where do they get the leisure to keep abreast of the never-ending flow of research being published?

    As for knowledge being power--thats only true if that knowledge is acted upon.....just don't get paralyzed into inaction due to too much knowledge.

    Wish i had your energy!!!!!

    Educating Ourselves
    Dave “e-Patient Dave” deBronkart is a VERY good source of information and an advocate for patients being part of the conversation as far as our care is concerned.
  • coloCan
    coloCan Member Posts: 1,944 Member
    PhillieG said:

    Educating Ourselves
    Dave “e-Patient Dave” deBronkart is a VERY good source of information and an advocate for patients being part of the conversation as far as our care is concerned.

    thanks,i'll check that out
    My onc, who's a younger Chinese lady, acknowledged she's not up on alternatives,etc; my urologist, an older Indian man, is ,so i run stuff by both of them. I also have all my docs give me input on my scans from their specialty perspective.....
  • KathiM
    KathiM Member Posts: 8,028 Member
    I'm dancing, dearheart!!!
    YEA!!!

    Knuffels, Kathi
  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    KathiM said:

    I'm dancing, dearheart!!!
    YEA!!!

    Knuffels, Kathi

    Congrats!!!!

    That is really wonderful news, Pete. Celebrate. I am so happy for you and for your family.

    Blessings galore!
    Cathleen Mary
  • northernlites
    northernlites Member Posts: 96

    my genetics test did not do pms2 gene
    Dear Tessa,

    i am smiling also. what a happy bunch we are considering we have cancer.
    we will be the happiest cancer forum on the planet. its a glorious sunrise here, and its 7.40am and i have to get the wife and kids up for school and start my juicing and supplments. takes about 2 hours each morning.

    i really hope your naturopath dr is the best in your area, what i do with every health professional ( includes doctors, surgeons, tcm, naturopaths, functional gp etc etc ) is understand where they a coming from , their bias. is the care they offer me, getting results. If they give me hope that counts for alot. I don't won't to loose a day to cancer related depression, as i still cannot get a guarantee on how many more days i have got.

    am i getting healthier ? yes or no

    my naturopaths were a good starting point, but with the first sign of recurrence i went straight to the functional gp's. now i do 24 hour urine samples and measure zinc, etc etc.

    what i have shared here is just what i have been taught by naturopaths and functional etc
    over time i also have started buying my supplements over the internet from places like iherb or puritans or life extension. getting some alternative support does not have to break the bank.

    I have been so challenged by the huge differences between conventional and alternative that i then have done my research about each of the recommendations.

    so far i have not found any negative evidence for the advice of my naturopaths and functional gp's. the only issue and its real is I am on so my products its a challenge in itself.

    I am trying to find a balance, until my rising cea goes back to normal I feel obliged to do all i am doing, as some of it maybe helping.

    if i do have a tumour growing somewhere, and face it , its likely, the little sucker is growing real slow, so slow they cannot find it yet.

    so i am on the ned, wagon. every quarter getting scanned looking for that gutless little tumour that won't even show itself. I think it knows whats going to happen to it, if it shows up.

    i will be straight to the liver or lung or brain surgeon with a box of chocolates for the receptionist and a bottle of scotch for the surgeon. and i will ask him to cut the little sucker out ASAP and to take a big margin as well.

    I will summarise the results of the genetic test so, i will email again fitgenes and ask them for the pdf version and i will be put it on my google docs for you to have a sticky break at. the report tells half the story, the 2 hours of naturopath consults discussing my health and the genes are recordings i place i value on. i am contemplating putting them up as well.

    so then if others start getting genetic profiles done we might be able to share what we learn a little more effectively. at the moment i feel like i am the only one doing the molecular and the genetic tests here. and we are the biggest colorectal forum on the planet. surprising, but i guess thats the way it is.

    in future the first test every cancer patient will get will be a genetics profile. mark my words. why wait the 10 years for evidence based medicine to get that into clinical practice. it costs me $395 for the test and them so far 2 x $200 for the consults so far.
    some i get back from health insurance.

    but my naturopath 7 darren went to the genetics conference, he is the best. no one else in sydney went. no doctors. do you get that. no doctors, no doctors, no doctors. that speaks volumes. our doctors are ignorant of genetics, our genes, their mutations and what epigentic changes we can influence in our lifestyle modifactions.

    i am saying for me, is i want to help conventional medicine get just one more good result for me. convnetional is too slow, over regulated, having government policies and procedures that slows the pace of medical innovation. we have our backs to the wall, we have the internet and we have each other.

    ask your naturopath about genes, your gene pms2 gene, i would be interested in the advice. see if he advises heavy tumeric supplementation as a way of killing polys on contact. you don't even have to get tumeric into the blood supply, its acting straight in the gi tracket.

    hugs,
    pete

    Hi Pete,
    I did ask my

    Hi Pete,
    I did ask my Naturopath about the pms2 genes.... She said she has done research and found that a few of her patients have this mutatiion but has never had cancer. She explained to me that these are patients that have been with her for long periods of time and she has had them on specific herbal remedies for other reasons. She beieves that these long term patients have benefited from her herbal and vitamin remedies therefore never getting cancer. She is a huge fan of tumeric and milk thistle. I was already taking this after my colon surgery. She also put me on 5 liquid drops of rosemary under my tongue 3 times a day. This is suppose to cleanse the kidneys and liver of any toxins. Naturopath thinks I have clogged my kidneys with too much unnessary vitamins... she wants me to consider an IV of specific vitamins and minerals that my body is missing. Zinc is one of them....

    Oh.... and she said I was a miracle! I really don't have alot of organs left in my body. My body has had a hard life! she wants me to assist her in writing a book..."Living without Organs".. Sounds crazy i know!

    Tessa
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    Great news!
    NED is wonderful!

    My CEA is slightly elevated, and it doubled in one month. So we were going to wait 2 weeks and re-check. In the meantime I had some scary swelling problems from abdomen to feet. So they re-checked all my labs and sent me for another CT (I just had one the end of January that was clear). My CEA dropped from 10 to 7 on its own - something it has never done. I did have a nasty cold/flu bug that I fought for a full month, and was at the end of it when my CEA showed up at 10 (was 5 the previous month). So we think maybe it was that bug that made my CEA spike. My CT was clear too! So I have bought another month of no treatments! I haven't had any cancer treatments for over 3 months now, and will be over 4 months of no treatment by the time I see my onc again. My CEA is elevated - it used to drop under 3 when I was NED. But all the chemo and radiation for 2 1/2 years did a lot of damage to my body. It may be that my CEA won't go down again. Or it may be that there is just enough cancer hiding out somewhere to raise it, and one of these days there will be a tumor large enough to find on a scan again. For now, I'm enjoying NED right along with you. The oncologist wants me to see my primary to follow up on the swelling issues. It may be my heart of something else. It is much better, but I still have issues with my feet and lower legs. I've been waiting an extra week for it to clear up, but no go... So I'm going to call the primary tomorrow and make an appointment for next week.

    Maybe something odd is causing your CEA to remain higher now too - something other than cancer. May you remain NED a long, long time!
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Wow
    Well, that's just plain amazing!

    *hugs*
    Gail
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member

    Great news!
    NED is wonderful!

    My CEA is slightly elevated, and it doubled in one month. So we were going to wait 2 weeks and re-check. In the meantime I had some scary swelling problems from abdomen to feet. So they re-checked all my labs and sent me for another CT (I just had one the end of January that was clear). My CEA dropped from 10 to 7 on its own - something it has never done. I did have a nasty cold/flu bug that I fought for a full month, and was at the end of it when my CEA showed up at 10 (was 5 the previous month). So we think maybe it was that bug that made my CEA spike. My CT was clear too! So I have bought another month of no treatments! I haven't had any cancer treatments for over 3 months now, and will be over 4 months of no treatment by the time I see my onc again. My CEA is elevated - it used to drop under 3 when I was NED. But all the chemo and radiation for 2 1/2 years did a lot of damage to my body. It may be that my CEA won't go down again. Or it may be that there is just enough cancer hiding out somewhere to raise it, and one of these days there will be a tumor large enough to find on a scan again. For now, I'm enjoying NED right along with you. The oncologist wants me to see my primary to follow up on the swelling issues. It may be my heart of something else. It is much better, but I still have issues with my feet and lower legs. I've been waiting an extra week for it to clear up, but no go... So I'm going to call the primary tomorrow and make an appointment for next week.

    Maybe something odd is causing your CEA to remain higher now too - something other than cancer. May you remain NED a long, long time!

    thanks kathryn
    ned for both of us sounds good.
    I hope so.

    the power of this crazy little inflamation marker, i feel great and thats my focus.
    I hope your ned lasts forever, that each day you heal and gain health. thats all i am trying to do, albiet a little fast tracked.

    use your ned time wisely, i am going hell for leather on the alternatives. thanks for sharing your story so far. its a great story.

    it gave me a lift.

    hugs,
    pete

    ps if you get the chance find the worlds best naturopath for you, ask them WHY regarding all your outstanding health questions. I have been amazed how easy it is to take a little lemon juice, or hymalayan sea salt or some probiotics. these treatments have worked wonders for my general health. sometimes the cheap and natual way out performs slow and toxic conventional therapies. i am sorry i am just so alternative these days. i like to believe in the healing power of our bodies and that we can really work with mother nature as long as we stop poisoning ourselves, which to be honest in our urban environments is a challenge, but not impossible.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    tootsie1 said:

    Wow
    Well, that's just plain amazing!

    *hugs*
    Gail

    thanks gail
    its easter, i am still thanking mr big. and thats not me.

    hugs,
    pete
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    tootsie1 said:

    Wow
    Well, that's just plain amazing!

    *hugs*
    Gail

    thanks gail
    its easter, i am still thanking mr big. and thats not me.

    hugs,
    pete