Survival Guide

[gibbo41]

A Survival Guide. Perhaps this may help some. It is the best book I have read in relation to what you can do to help yourself when you have a cancer diagnosis. I continue to use it as a guide 5 years later.

Key points from chapter 3, Disease and the Mind, in Dr Bernie Siegel’s book

Love Medicines and Miracles. First published by Rider in the UK, 1986

I first read this book in 2009, after I was found to have metastatic prostate cancer in my lungs, when I began a search for ways that I might survive. It showed me then that there is a great deal that we can do for ourselves when faced with a potentially terminal illness. I have gone back over this chapter now to distil off what I see as the main messages, so that I can better apply the lessons I learned then. These are;

•Healthy self esteem is essential

•Peace of mind is essential

•Give vent to your feelings

•Don’t suppress anger

•Don’t feel a failure

•Be at peace with yourself and your surroundings

•Have real meaning in your life

•Avoid feeling trapped

•Avoid feeling helpless

•Male camaraderie is needed

•Anticipate recovery

•Avoid predicting illness

•Express your emotions – especially those relating to your needs

•Enjoy what you do each day

•Use drugs and surgery to buy time to change your life

•Be honest. Avoid an outward ‘show’ of happiness

•Visualise change to bring it about

 Prepared by Gibbo41  

November 2011

[JoelT]

I strongly believe that all of these points are excellent and that each and everyone of us needs to find a way to incorporate them into our life.  For many of us this is not so easy.

There is a general research finding that feeling in control of your destiny, or having the locus of control, enhances well being.  All of the points you cited, when you boil them down, really do enhance our feeling that we have taken back control of our life.

The one very important point that was not listed is being educated about your disease, in this case prostate cancer, so that you have even more control in your decision making.  Control of your health decisions helps to reach many of the points you cited.

Thank you for sharing them.

Joel 

[gibbo41 in reply to JoelT]

Thank you for the positive feedback Joel. I agree about the importance of being educated about your disease and have made that a focus of my journey. That knowledge helps a great deal in working with doctors in making decisions. I remember one Medical Oncology Registrar who told me in 2009 when PCa mets were identified in my lungs that 'Knowledge is Empowerment' . She also said that she believed we all have an inner source of strength that we can draw on for healing that is not understood by Western medicine (she was of Asian origin). I believe what she says to be right.  

[Jonlaco]

Gibbo 41: Can you please give me your PCA history if you don't mind.  I as well have developed metastases in my lungs.  I have some lymph nodes and soft tissue involvement.  I have spine mets as well.  I am currently in the hospital as I am getting more weakness in my left leg.  I have spine surgery in Sept. 2015 to remove a tumor from L3 but it has grown back and now I am in a wheel chair.  I have had new scans completed while in the hospital and I will be getting results from my doctors tomorrow.  I hope to be starting Xofigo soon and maybe even Zytiga.  Hearing that you as well have lung mets gives me some hope.  I am very interested in your history of your prostate cancer.  You can read my history on my profile if you would like.  Thanks for the encouragement about the Survivor Guide

[gibbo41]

Jonalco. Thanks for your feedback. I have tried to enter my history but without luck so have copied it below.

Diagnosed in September 2007 with firstly bladder cancer (topical lesion removed by surgery, no recurrences) than PCa. Prostatectomy October 2007. Not curative, recurrence. Hormone (ADT) with Lucrin Depot for 6 months from Jan 2008 then Radiation to prostate bed. Effective at dropping PSA but lung mets detected in March-April 2008. Started Lucrin Depot again in May 2008 and this has been continuous since then (7 years) apart from one 3 months break (PSA rose again when I stopped). To Prof Charles Myers (a prostate cancer specialist) in Charlottesville, Virginia in 2011 and again in 2012. Started on Ketoconazole (an antifungal, highly effective against PCa but not now used in Australia) by him and used for 2 years. Also used concurrently Leukine and oestrogen patches (NINE daily). Treatment very effective at reducing lung mets in size and dropping PSA. Treatment was very controversial with some local (Perth) Oncologists who refused to support the treatment however my GP and Respiratory Specialist did. Changed to Abiraterone (Zytiga) in about June 2013 and continued for over 2 years. Partially effective in controlling lung mets. First bone lesion detected at T10 in 2011. Treated with radiation to prevent 'explosion' of further lesions. This worked for about 3 years. Had molecular profiling of lung lesions in 2014 by Caris Life Sciences in USA (biopsy done in Perth)and used cetuximab January to March 2015 but with little or no effect on lung mets. Chemotherapy with Taxotere March to October 2015 (10 cycles). Effective against lung lesions but not against bone mets. Therefore started Lutetium (a radioactive isotope) in October 2015 and continuing. 4th treatment due 28th April. Uptake by PCa lesions has apparently been good but as yet don't know how effective this has been. I remain well with no lung symptoms and only back stiffness - which may or may not be caused by bone mets - or it may be the Lutitium working. Don't know yet.

In 2009 when lung mets were detected I realised my life was at risk and went on a search to find out what I could do for myself. I read and consulted widely and developed a health care plan that included many lifestyle changes - including (most importantly) reduced stress, exercise and correct nutrition. Prof Charles Myers is a strong advocate of a holistic approach and that is what I take. I have used the following supplements on Prof Myers recommendation since I saw him in 2011. Omega-3 capsules (2 twice a day), lycopene one 3 times a day, resveratrol, curcumin and pomegranate - all one twice a day and make sure my Vitamin D levels are in the upper range. I remain in touch with him through his Patient Portal and have a high regard for his knowledge and skill. For anyone interested Prof Myers can be contacted at his clinic, the American Institute for Diseases of the Prostate. I remain well and active and regularly attend my local Gym twice a week. I have a very supportive wife which makes a huge difference.

Xofigo sounds like a good option but only treats bone mets - not soft tissue lesions. Can you get onto Lutetium, which treats both? It is still experimental in this country but it's use is spreading quickly.

Hope is an important part of survival and I will post something on that soon that I put together. Don't give up hope. Best wishes. Gibbo41