NEW TO THIS BOARD, DIAGNOSED OCT 20, 2012

johnsnowden
johnsnowden Member Posts: 20
in Colorectal Cancer #1

Hi,

I introduced myself at the tail-end of the 'newbies posting on old posts' thread and it was suggested i introduce myself this way instead.

You all seem very sincere and i appreciate your camraderie. I live in a remote desert area near Palm Springs, there is one support group at the hospital but transortation is an issue. Most people i know are non-patients and only know older relatives with cancer, if any at all. At 49 years old, working at a gym, exercising and eating realy well, no drugs/alcohol, etc., everybody was pretty blown away. Everybody said 'stay positive' and 'we'll pray for you', but they did not really know what to say.

My 1 to 2 years of rectal bleding turned out to be a rectal cancer (and not hemorhoids) and was stage 3c with a giant inguinial lymph node at the time. I have been on this, odyssey, radiaion/xeloda, transrectal exams, some surgery and soon chemo (folfox). 

But my situation now is very different. My 6-7 cm tumor was half as big in january when radiation ended. It was expected to shrink more, perhaps down to 25 percent of original size. But 2 months later, as i prepared for a colostomy, the surgeon did a transrectal exam and found the tumor gone completely. Beforehand a PET scan done by UCLA showed indications of radiation, but no masses, no lymph node involvement either. The surgeon removed a sample of scar tissue from where the tumor hade been which was biopsied and contained some 'irregular cells', but no tumor. So 2 weeks later he (we) opted to removed that scarred area of the rectum, about the size of a 50 cent piece, above the sphincter, with a border, for 're-biopsy'. This time no malignancies at all. Today my colorectal surgeon was pleased, i am healing well (although very very sore!) and am expected to have regular bowel function again in weeks (right now it hurts a lot to poop!) and should have no other side effects.

UCLA, on the other hand, wanted to go with the complete colostomy after the first post radiation biopsy. Thank god for second opinions (they were actually the 2nd opinion, I have been with Eisenhower Med Center mostly.)

So i am one of the lucky ones, having had a 'complete pathologic response' to radiation. maybe 10 to 12 percent of patients have this happen, i am told. My oncologist still wants to treat me with 8 sessions of chemo, to be on the safe side. 

Yes i feel lucky, but i also feel my efforts contributed. An even better, meat free and high alkaline diet was one thing. Soul searching, travelling, re-evaluation spiritual beliefs another. Avoiding any negative triggers at all, personally transforming, deciding i wanted to live, and wanted to love myself and others. Even a healing stone made for me that i never removed.

I do not want to give anyone false hope, or dietary or spiritual advice. Just know that you are loved. And get second opinions!

I look forward to feedback, meeting new friends, and helping any way i can. I still don't understand it, but by the time the last biopsy and scan were done, I was expecting them to be 'good ones'.

sincerely, John

 

ok, synopsis: my stage 3b rectal tumor, 6cm, went away completely due to external beam radiation and chemo.

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Comments

  • wolfen
    wolfen Member Posts: 1,324 Member
    #2
    Welcome, John

    I am up late, as you are & just wanted to welcome you to our group. This is fantastic news that you have shared & will be an inspiration to many here, especially the ones just beginning the journey. Without hope, what do we have?

    I, myself, have been around for a while, not as a cancer patient, but as cancer survivor, nevertheless. My daughter is Johnnybegood, another member here. She has been fighting the beast with all her might for close to five years and is nowhere near to giving up.

    Unfortunately, my husband of 41 years lost his battle with H&N & Lung Cancers almost three weeks ago. The world is a lonely place right now. But with the love and support of this wonderful group as well as the H&N forum, I am making my way one day at a time. IMO, you could not have found a better group to be a part of to give & receive support.

    Luv,

    Wolfen

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    Love it!

    I love to hear from those who are surviving.  

    I am about to start radiation/5FU for six weeks, and honestly it plays on my mind.  

    I have heard/read about so many horror stories, that your report give me loads of comfort, and I thank you for posting here. 

    May you continue your journey, your life Cancer free. 

  • tellspring
    tellspring Member Posts: 16
    #4
    thanks for sharing John

    I John,

    I just joined the group last week. This board is great to provide help to cancer patients. My wife was just diagnosed with situation simular to you. I understand not everybody is as lucky as you're but sharing good news do help a lot with courage. I'd appreciate if you can provide some more guide on your diet experience. My wife is expected to start treatment in a week or two after her consulting in both UCLA and USC. I'm thinking on all organic, low fat and mostly vegetable diet with sea fish. Do you think sea fish is good? Also can you give some examples of high alkaline food?

    Thanks a bunch!

    Spring

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
    Welcome

    What a wonderful story and thank you for sharing that.  Welcome to the board where you will find a lot of really good people.  Sounds like you have gone through the first part of your journey with great success.  If you have any questions with the upcoming treatments just ask.  Hope things continue to go well for you.

    Kim

  • Aud
    Aud Member Posts: 479 Member
    #6
    Welcome John

    Welcome to the Board.   It's a good group.  I have not been too active on the Board the last couple years but I check in sometimes and came across your post. 

    I think it is great that you had such a wonderful response to treatment to downgrade the tumor to scar tissue.  I do want to commend you on thinking critically about treatment and seeking second opinions in order to make a truly informed decision.  I was so upset by my diagnosis that I simply followed my surgeon's and medical team's decision on treatment, without seeking other opinions/treatment options.

    And whether or not good nutrition, exercise, and our spirituality directly affect cancer (I believe they do), it certainly helps us to lead more enjoyable, healthy,  loving and fulfilling lives, realizing our true selves.

    Sincerely,

    Audrey

  • johnsnowden
    johnsnowden Member Posts: 20
    #7
    wolfen said:

    Welcome, John

    I am up late, as you are & just wanted to welcome you to our group. This is fantastic news that you have shared & will be an inspiration to many here, especially the ones just beginning the journey. Without hope, what do we have?

    I, myself, have been around for a while, not as a cancer patient, but as cancer survivor, nevertheless. My daughter is Johnnybegood, another member here. She has been fighting the beast with all her might for close to five years and is nowhere near to giving up.

    Unfortunately, my husband of 41 years lost his battle with H&N & Lung Cancers almost three weeks ago. The world is a lonely place right now. But with the love and support of this wonderful group as well as the H&N forum, I am making my way one day at a time. IMO, you could not have found a better group to be a part of to give & receive support.

    Luv,

    Wolfen

    thank you for welcoming me

    i also love wolves, all dogs, all animals!

  • johnsnowden
    johnsnowden Member Posts: 20
    #8
    tellspring said:

    thanks for sharing John

    I John,

    I just joined the group last week. This board is great to provide help to cancer patients. My wife was just diagnosed with situation simular to you. I understand not everybody is as lucky as you're but sharing good news do help a lot with courage. I'd appreciate if you can provide some more guide on your diet experience. My wife is expected to start treatment in a week or two after her consulting in both UCLA and USC. I'm thinking on all organic, low fat and mostly vegetable diet with sea fish. Do you think sea fish is good? Also can you give some examples of high alkaline food?

    Thanks a bunch!

    Spring

    i will share what i have done...

    i was in the process of becoming vegan before being diagnosed. for health, and for the sake of animals. after watching 'forks over knives' i came to believe that a plant based diet could inhibit cancer growth and maybe reverse it. from sites like vegan body building i have learned that meats and fish are some of the most contaminated food sources out there. also, all meats contribute to a rise in the acidic level of the bloodstream, a condition in which cancer supposedly thrives.

    high alkaline forming foods are avocados, apples, grapes, quinoa, almonds, coconut. most other foods fall in ranges of high acidic, med. acidic, med. alkaline, low alkaline, etc., and it is my understanding that one shouldn try to keep the body's ph balance leaning towards alkaline, or highly alkaline if trying to deter cancer. i also understand that the body will naturally re-balance itself but can be kept towards the higher alkaline side with effort.

    the foods are too numerous, please 'google' high alkaline foods. i also avoid all white sugars, high glycemic foods, processed foods and soy products. 

  • johnsnowden
    johnsnowden Member Posts: 20
    #9
    Annabelle41415 said:

    Welcome

    What a wonderful story and thank you for sharing that.  Welcome to the board where you will find a lot of really good people.  Sounds like you have gone through the first part of your journey with great success.  If you have any questions with the upcoming treatments just ask.  Hope things continue to go well for you.

    Kim

    thank you

    i will have concerns about chemo, oxyplatilin, etc., and will start a thread about those things.

  • johnsnowden
    johnsnowden Member Posts: 20
    #10
    Aud said:

    Welcome John

    Welcome to the Board.   It's a good group.  I have not been too active on the Board the last couple years but I check in sometimes and came across your post. 

    I think it is great that you had such a wonderful response to treatment to downgrade the tumor to scar tissue.  I do want to commend you on thinking critically about treatment and seeking second opinions in order to make a truly informed decision.  I was so upset by my diagnosis that I simply followed my surgeon's and medical team's decision on treatment, without seeking other opinions/treatment options.

    And whether or not good nutrition, exercise, and our spirituality directly affect cancer (I believe they do), it certainly helps us to lead more enjoyable, healthy,  loving and fulfilling lives, realizing our true selves.

    Sincerely,

    Audrey

    nice to meet you

    please stay in touch.

  • ron50
    ron50 Member Posts: 1,723 Member
    #11
    johnsnowden said:

    nice to meet you

    please stay in touch.

    welcome John
    It sounds like you have be incredibly lucky in that radiation seems to have been extremely effective on your cancer. It highlights how different each of us are in our genetic makeup. Although we share a dx of colon ca it is in fact our personal ca and what works for one will not necessarily work for all. It is a good feeling to have early success. I was dxed in 1998 with stage 3c into 6 nodes. I had a year of chemo , mainly 5fu but enhanced with an old regime drug called levamisole. It was effective and I have been ca free since that time. Unfortunately levamisole was banned for human use in 2000 because of often fatal side effects. I say unfortunately not because it was banned but unfortunately it was not banned before I had it. I have suffered a lot of long term side effects that I believe were caused by levamisole.
    Good luck with your recovery and long term survivorship . Ron.
  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #12
    tellspring said:

    thanks for sharing John

    I John,

    I just joined the group last week. This board is great to provide help to cancer patients. My wife was just diagnosed with situation simular to you. I understand not everybody is as lucky as you're but sharing good news do help a lot with courage. I'd appreciate if you can provide some more guide on your diet experience. My wife is expected to start treatment in a week or two after her consulting in both UCLA and USC. I'm thinking on all organic, low fat and mostly vegetable diet with sea fish. Do you think sea fish is good? Also can you give some examples of high alkaline food?

    Thanks a bunch!

    Spring

    Tellspring

    I've not heard of high alkaline foods. Very interesting.

    I have adopted (for the most part) the Medioterrain diet.  Lots of good foods that nature intended us to eat. 

    I think fish woud be great (I eat it), lot of Omega's.  Check it out with your Oncologist.

    May you and you wife be blessed. 

    Just a couple of books that have helped me change my diet.  'The Mediterranian Diabetes Cookbook' by Amy Riolo and 'Cooking with Foods that Fight Cancer'  By Richard Beliveau, Ph, D. & Denis Gingras, Ph, D.

    I have so many recipes from the last book that I'm sure to come out of this Cancer, healthy.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #13
    ron50 said:

    welcome John
    It sounds like you have be incredibly lucky in that radiation seems to have been extremely effective on your cancer. It highlights how different each of us are in our genetic makeup. Although we share a dx of colon ca it is in fact our personal ca and what works for one will not necessarily work for all. It is a good feeling to have early success. I was dxed in 1998 with stage 3c into 6 nodes. I had a year of chemo , mainly 5fu but enhanced with an old regime drug called levamisole. It was effective and I have been ca free since that time. Unfortunately levamisole was banned for human use in 2000 because of often fatal side effects. I say unfortunately not because it was banned but unfortunately it was not banned before I had it. I have suffered a lot of long term side effects that I believe were caused by levamisole.
    Good luck with your recovery and long term survivorship . Ron.

    What might they be?

    'I have suffered a lot of long term side effects that I believe were caused by levamisole.'

    What kind of side effects, Ron?

    I wonder if there is help (finacially) afforded to you in compensation for your country giving you a medication with such dier side effects.

    I know here in the States they have loads of 'law suits' to cover problems from faulty drugs. Whether they are good or not, couldn't tell you.

    I am sorry that you are expreiening these side effects, but glad that you are here with us.

     

  • ron50
    ron50 Member Posts: 1,723 Member
    #14
    Trubrit said:

    What might they be?

    'I have suffered a lot of long term side effects that I believe were caused by levamisole.'

    What kind of side effects, Ron?

    I wonder if there is help (finacially) afforded to you in compensation for your country giving you a medication with such dier side effects.

    I know here in the States they have loads of 'law suits' to cover problems from faulty drugs. Whether they are good or not, couldn't tell you.

    I am sorry that you are expreiening these side effects, but glad that you are here with us.

     

    G'day Trubrit
    I have been dxed with an unknown auto-immune disease. When I was treated with chemo I asked about long term side effects. I was told "don't worry we are out to kill your ca, if there are l/t effects we will deal with that later'. They didn't and haven't. After I got over the treatment for the cancer. I became very active and fit. I was walking up to 50 miles a week. I started to lose touch with my feet. No one could explain why. I developed acute pancreatitis and subsequently lost my gall bladder. Quite common for cc chemo recipients. I began to suffer from peripheral oedema. I was checked for diabetes and congestive heart failure. Neither was present. A random urine test showed high levels of protein in my urine, around 3 grams,.015 gram is baseline normal. Since then I have had three kidney biopsies. All of them showed problems , but none pertaining to known kidney disease. I have been dxed with severe reactive psoriatic arthritis. The treatment for kidney disease .which was given on the "lets try basis", has
    left me with type two diabetes , osteoporosis and ankylysing spondylitis.(18 mos of 75 mg daily of prednisone). My neuropathy now extends past the knees on each leg and I cannot feel my left hand. I began to have panic attacks at night ,not being able to get enough oxygen. I have had scans that show I am now into congestive heart failure and pulmonary oedema. It is being treated with lasik. I had follow up heart tests which shows my heart just beyond maximum normal size and abnormal beats IE, VEB's ventricular ectopic beats. I never had them before but I am assured they are benign, yeah right. So at this point in time I am in a poor state of health . I have been treated with some really nasty immuno-suppressants and threatened with ones even worse yet no one has been able to give me a dx on exactly what is causing my problems tho they have said that if I lose any organs I am do not qualify for a transplant because I am immune-compromised. Ron.
  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #15
    ron50 said:

    G'day Trubrit
    I have been dxed with an unknown auto-immune disease. When I was treated with chemo I asked about long term side effects. I was told "don't worry we are out to kill your ca, if there are l/t effects we will deal with that later'. They didn't and haven't. After I got over the treatment for the cancer. I became very active and fit. I was walking up to 50 miles a week. I started to lose touch with my feet. No one could explain why. I developed acute pancreatitis and subsequently lost my gall bladder. Quite common for cc chemo recipients. I began to suffer from peripheral oedema. I was checked for diabetes and congestive heart failure. Neither was present. A random urine test showed high levels of protein in my urine, around 3 grams,.015 gram is baseline normal. Since then I have had three kidney biopsies. All of them showed problems , but none pertaining to known kidney disease. I have been dxed with severe reactive psoriatic arthritis. The treatment for kidney disease .which was given on the "lets try basis", has
    left me with type two diabetes , osteoporosis and ankylysing spondylitis.(18 mos of 75 mg daily of prednisone). My neuropathy now extends past the knees on each leg and I cannot feel my left hand. I began to have panic attacks at night ,not being able to get enough oxygen. I have had scans that show I am now into congestive heart failure and pulmonary oedema. It is being treated with lasik. I had follow up heart tests which shows my heart just beyond maximum normal size and abnormal beats IE, VEB's ventricular ectopic beats. I never had them before but I am assured they are benign, yeah right. So at this point in time I am in a poor state of health . I have been treated with some really nasty immuno-suppressants and threatened with ones even worse yet no one has been able to give me a dx on exactly what is causing my problems tho they have said that if I lose any organs I am do not qualify for a transplant because I am immune-compromised. Ron.

    Oh dear!

    I am so sorry for your ongoing problems.  

    I pray you will find a treatment that eliviates at least some of these problems, and that of course you continue NED.

    I will keep you in my prayers. 

  • danker
    danker Member Posts: 1,276 Member
    #16
    Trubrit said:

    Love it!

    I love to hear from those who are surviving.  

    I am about to start radiation/5FU for six weeks, and honestly it plays on my mind.  

    I have heard/read about so many horror stories, that your report give me loads of comfort, and I thank you for posting here. 

    May you continue your journey, your life Cancer free. 

    trubrit

     

    I had 5 weeks of radiation coupled with a chemo pump delivering 1 1/4 mg per hour 24/7. Other than some diarrhea which was controlable with LOMOTIL

    Then the resection, including an iliostomy.  6 weeks later a reverse of the iliostomy, but developed a fistula.  That healed itself frome the inside out.   A 2011 colonoscopy showed NED.  Been that way ever since.  Don't be afraid!! Like me you can beat it!! Good luck

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #17
    danker said:

    trubrit

     

    I had 5 weeks of radiation coupled with a chemo pump delivering 1 1/4 mg per hour 24/7. Other than some diarrhea which was controlable with LOMOTIL

    Then the resection, including an iliostomy.  6 weeks later a reverse of the iliostomy, but developed a fistula.  That healed itself frome the inside out.   A 2011 colonoscopy showed NED.  Been that way ever since.  Don't be afraid!! Like me you can beat it!! Good luck

    Thank you!

    Your words really comfort me. 

    I've read too many horror stories, and not enough of experience from those who lived though it.

    I will face June 3rd allot calmer I think.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #18
    Welocme John. Seems we have a

    Welocme John. Seems we have a lot in common, Good attitude towards this, exercising, diet, and animal lover. You can read my profile.

    BTW we(My wife and I) have  -dwarf goats, 2-dogs, 3-ducks, 3-chickens, and 1-parrot.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #19
    Welocme John. Seems we have a

    Welocme John. Seems we have a lot in common, Good attitude towards this, exercising, diet, and animal lover. You can read my profile.

    BTW we(My wife and I) have  -dwarf goats, 2-dogs, 3-ducks, 3-chickens, and 1-parrot.

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #20
    janderson1964 said:

    Welocme John. Seems we have a

    Welocme John. Seems we have a lot in common, Good attitude towards this, exercising, diet, and animal lover. You can read my profile.

    BTW we(My wife and I) have  -dwarf goats, 2-dogs, 3-ducks, 3-chickens, and 1-parrot.

    Jeff

    Where's the Partridge in a Pear Tree?

    Cool

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #21
    Sundanceh said:

    Jeff

    Where's the Partridge in a Pear Tree?

    Cool

     

    No pear tree but we do have

    No pear tree but we do have an apple tree and you never know about the partridge.

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