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Control the Beast

Posts: 77
Joined: Jan 2012

Someone from CSN asked me recently regarding my treatment that has kept me going to this day and I would like to share my journey with you.

A little brief background information is as follows which applies to me only and I do not wish to influence anyone with their treatment. This information is provided purely for your information and comparison purposes only.

After I was diagnosed with near total bowel obstruction Stage 4 Liver/Lung Mets in April 2009, I immediately took early retirement to treat the CRC and recover from the colon resection which was undertaken on 01 May 2009, (due to metastasis no other surgery was contemplated). During the period from May 2009 to Feb 2011 - received Oxilplatin and Xeloda ( 8 tabs per day) for 7 months, followed by Avastin and Xeloda (6 tabs per day) for a further 3 months and Erbitux on its own for 3 months. Had regular CT scans every 3 months from Apr 2009 up to May 2012. I want to believe I had the best Medical Oncologist in this state, therefore seeking a second opinion was never entertained.

My CEA levels which were tested every month, have always slowly increased over 41 months (initial was 7 now 247) but still had very little other symptoms dealing with CRC. I stopped my conventional treatment in June 2010 when the disease was stable and liver tumour had nearly disappeared, multiple lung nodules had shrunk to around 10 mm sizes Why did I stop treatment? well I was experiencing cardiac issues which was partly attributed to the Avastin. This issue has now (Jun 12) been finally resolved thank goodness, it's bad enough dealing with the disease without having heart problems.

In April 2011, I had secondary liver,lung and pancreas disease progression and I decided to have 'quality time' rather than experiencing chemo effects up to my passing. I am 57 and I do believe being relatively fit & active and mentally strong has played an important part in my survival to this date. Now I am under early Hospice Care because I wanted to have these arrangements in place now to assist my wife (my carer) deal with pain and other 'end of life' issues. I feel really good and still doing low physical jobs around the house. Some days I have left collarbone pain & swelling, fatigued and nauseous, night (cancer) sweats but still wake up feeling pretty good.

I eat what I like, especially fresh FRUIT and smoothies (2-3 times per day), I have strong tea with 1 sugar, eat very dark chocolate every night, take 1 aspirin per day, no other special diet requirements except limit meat intake, no vitamins or supplements.

My goals are now to make it to the 5 year mark.

Best regards to everyone with your plans, health and happiness. Thank you for your information posted here on CSN Forum, it has helped me dealing with "the Beast".


Posts: 157
Joined: Jan 2011

Thank you for sharing. I think you are a very courageous and strong man. I like that you are doing things your way and that it is working for you and your family.

Just wanted you to no.


Posts: 135
Joined: Dec 2010

You have gone through much. Thank you for sharing your story. I'm glad you have mostly good days. You seem like you have an excellent team behind you, supporting you and your wife. It is quite amazing for you to be off treatment for such a long time. I hope you continue to have many many more good days and surpass the 5 yr mark.


steveandnat's picture
Posts: 887
Joined: Sep 2011

I really pray you stay well past 5 years. Your journey is very interesting since I to was dx in 2009 and have been doing similar treatments. Keep up the good fight. Jeff

devotion10's picture
Posts: 631
Joined: Jan 2010

last night at dinner. I shared your story with my husband (who has stage four colorectal cancer) and son. We spoke of your courage and your strength. We raised our glasses in a toast to you ... and the five year mark.

Best to you,


Phil64's picture
Posts: 835
Joined: Apr 2012

Andrew, thanks for sharing your story.

I'm sure there are many other people who have decided the no treatment option. I wish you the best quality time there is, and I hope that LOVE flows down upon you and your family everyday.

Keep us posted.


Maxiecat's picture
Posts: 544
Joined: Jul 2012

Thank you for sharing your journey with all of us. We are all pullijg for you to surpass that 5 year mark. Did your dr give you any info on what is causing the collar bone pain...i have been experiencing some left collar bone and shoulder pain for about a week now. Ihave my next appointment with the onc on Friday.


Posts: 77
Joined: Jan 2012

Thank you everybody for your kind thoughts to my post.

I have had left collarbone pain for about 2 months now and its progressively getting worse. My ONC does not want me to have anymore CT scans because he is more concerned about the liver mets. I have swollen left side neck glands and lymph node involvement. It seems I may have some small tumours in that region and I am now wondering if the mCRC disease has/or spread to my head? I did have a Brain MRI early in 2012 but it failed to show anything (but I do have a brain!!!) I am not having any other symptoms of brain mets. I suppose "time" will tell one way or the other and there's not much I can do about it anymore.

I would like to believe this collarbone and neck pain is really just a strained neck muscle????? LOL. Good luck with your ONC appointment on Friday, can you please PM me about your collarbone? that way we can help each other with our discomfort.


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