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NEW TO THIS BOARD, DIAGNOSED OCT 20, 2012

johnsnowden's picture
johnsnowden
Posts: 20
Joined: May 2013

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.

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

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

johnsnowden's picture
johnsnowden
Posts: 20
Joined: May 2013

i also love wolves, all dogs, all animals!

Trubrit's picture
Trubrit
Posts: 1712
Joined: Jan 2013

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. 

danker
Posts: 773
Joined: Apr 2012

 

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's picture
Trubrit
Posts: 1712
Joined: Jan 2013

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.

tellspring
Posts: 16
Joined: May 2013

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

Trubrit's picture
Trubrit
Posts: 1712
Joined: Jan 2013

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.

johnsnowden's picture
johnsnowden
Posts: 20
Joined: May 2013

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. 

Annabelle41415's picture
Annabelle41415
Posts: 4412
Joined: Feb 2009

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

johnsnowden's picture
johnsnowden
Posts: 20
Joined: May 2013

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

Aud's picture
Aud
Posts: 477
Joined: Oct 2009

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's picture
johnsnowden
Posts: 20
Joined: May 2013

please stay in touch.

ron50's picture
ron50
Posts: 1323
Joined: Nov 2001

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's picture
Trubrit
Posts: 1712
Joined: Jan 2013

'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's picture
ron50
Posts: 1323
Joined: Nov 2001

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's picture
Trubrit
Posts: 1712
Joined: Jan 2013

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. 

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

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's picture
Sundanceh
Posts: 4342
Joined: Jun 2009

Where's the Partridge in a Pear Tree?

Cool

 

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

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

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

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.

johnsnowden's picture
johnsnowden
Posts: 20
Joined: May 2013

wonderful attitude. taking control of doctors is helpful too, i agree, i have gone to have second opinions from hundreds of miles away. don't be bogged down by 'my insurance this and that'. pay cash for a consultation, 2 or 3 hundred. get all medical records yourself, they are free. 

and love those animals, they are sentient beings, like us.

 

nice to meet you!

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Welcome, and may you continue to have success in your journey!  

 

 

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Welcome, this is a great forum!!!

Judy

lp1964's picture
lp1964
Posts: 912
Joined: Jun 2013

Hey John,

My age and cancer is almost identical to yours, but I am at the very beginning of the process.

I have a Stage 2-3 adenocarcinoma right above the sphincter. It's 5X4 cm and penetrated the wall

of the rectum. I'm starting radio and Chemo next week and surgery at the end of summer.

I feel strong and I have healthy lifestyle so I'm shooting to heal this cancer without surgey.

My questions for you:

What did they use for chemo at the beginning and how was the process?

Everybody tells me that without surgery if the cancer comes back it will be lot worse. What do your doctors say and do you

think its worth going throught the surgey and what comes after or wait and see?

Your response would be greatly appreciated. Laz

Trubrit's picture
Trubrit
Posts: 1712
Joined: Jan 2013

I know you asked John specifically but I have to add my pennies worth. 

have you posted an introductory thread?

this is a great community, sadly it's a fight for your life forum, but we do it well and you'll get great response from your own thread. 

That being said, my resection went really well. because I was healthy, I healed very e quickly. I would go for the surgery just to cover your bases. Just my opinion.  

Good luck With your battle. 

SUE

johnsnowden's picture
johnsnowden
Posts: 20
Joined: May 2013

although i answered your question in detail in the PM you sent me, i will answer here as well, perhaps in a more simplified manner.

i feel that the quality vs. quantity of life decision is extremely personal. i do not suggest trading a long, perhaps fulfilling life for a shorter, more comfortable and less 'disfigured' life. my decision is based on the idea that i may have as much a change of recurrence without the permanent colostomy as i would with it, yet a doctor at UCLA was very adamently against that. perhaps if it 'comes back' i could then have the major surgery and more conservative treatment, or maybe it will come back worse than before. i have not heard that it necessarily comes back 'worse than before' from from either oncologist.

however, my condition is different in that i have had the so-called 'complete pathologic response' from radiation and chemo treatment (chemo pills, Xeloda). when my scar tissue was removed and biopsied in 10 sections no malgnancies were detected. therefore i have very good odds from here forward.

i sincerely wish you the best of luck, to be free of fear and to find peace and love.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

John - just saying hello and it sounds like you are doing all the right things!
Wishing you the best in moving forward.
Barb
I like your verse of finding peace and love...

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