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BRONZE

David Heritage and Sibylle live in England. He was 62 when he was diagnosed in August 2008. His initial PSA was 299.0 ng/ml, he does not know his Gleason Score and he was staged T4. His choice of treatment was ADT (Androgen Deprivation Therapy). Here is his story.

When I experienced chronic bone pain in my lower spine and upper back in the summer of 2008 I was sure and terrified that that the vertebral osteomyelitis I had suffered from 10 years earlier had come back to disable me again.

In 1998 I had been admitted to hospital in screaming agony but there was no correct diagnosis until 1999 after transfer to King's College Hospital in London. Before that I had been told, after my family had been told, that I had cancer of the spine and would be dead in a few months. As a survivor I had monitored all my results very thoroughly and declined treatment for the incorrect diagnosis; hence my transfer.

I left hospital after four months, at only 55% of my normal body weight, after long term and sickening massive intravenous antibiotic doses but was unable even to sit up for several months, my lower 5th vertebra having initially dissolved to mushy chalk. It took two years to become mobile and eventually engage in manual work on my 35 acre smallholding.

The interim period and whole episode was incredibly stressful, in fact hellish, for my beloved Sibylle and family as they had moved, with an aged mother ,after my hospitalisation to the house/cabin that I had only 90% completed.

In 2006 having sold up and moved to Worcestershire I collapsed during an energetic "hedgelaying " demonstration., After nearly killing me with steroids my GP took X rays etc and after an ultrasonic cardio echogram I was found to have suffered from chronic heart failure. have an enlarged heart and failing left ventricle. My consultant ,bless him, said "Well I really don't know what to say except that your heart is knackered" Me "Is that a new medical term- should I start reading any new books then?" Him ,after a pause "OK but maybe not War and Peace"

This condition, results also in water retention, and disguised the fact that I had probably been developing PC for some time possibly years - maybe it already existed at the time of the osteomyelitis diagnosis.

My 2008 recurrence of bone pain led to a fob off until I told my GP I would not leave the surgery without some serious pain control and specialist appointment. The referral, because of my history and suspicion was to a leading orthopaedic hospital which resulted in a prompt bone biopsy and diagnosis, August 2008, of prostate cancer. Subsequent scans including MRI at the Birmingham Cancer Centre showed that the cancer had spread to the pelvic region, upper thoracic spine with deposits on the lymph nodes.

The notice at Birmingham read "Birmingham Cancer Centre" in huge letters but to me, dragging myself in, severely drugged with morphine etc it simply said "you've got cancer and you're going to die very soon "

There were no options given, no alternatives explained by the kindly but stressed Italian consultant whose command of English did not help. I should simply embark on a course of Zoladex and some bone chemo treatment. My GP was shocked and actually said that I must have been really bad in an earlier life. When I suggested - perhaps even in this life, he retorted "Oh no - it says here that you have never smoked!! which was true .

(To be continued as I am now knackered, partly from the memories, partly from the effort and possibly by the hour and red wine ,supped of course purely for its anti-oxidant properties)

Later: This is a continuation of my initial story.......I shared the earlier medical history as I believe, from my experience, that medical conditions/symptoms can overlap. Tunnel vision by us or our medical advisors can easily occur in these circumstances, often resulting in an important or main issue being missed.

An analogy I would draw of this is the airport metal detector. You go through and when the alarm is triggered you surrender your pocketed keys to the guard. You expect this to be the end of the matter but oh no! as you are forced back through the device just in case you still have something dodgy on your person. So why did I and my advisors assume (ass-you-me)that because one condition was confirmed, none other existed?

For almost a year prior to my 2008 PC diagnosis, I had been planning to walk across northern Spain, via the Camino de Santiago, from the French side of the Pyrenees. When I got the "bad news" I declined immediate treatment and set off on my journey as soon as I could get a flight. The only way that I could carry my light but still 8kg pack was through massive doses of painkillers including immediate and slow release morphine. A quarter of my payload consisted of 5 weeks supply of these drugs plus heart medication and vitamin supplements "D" and "C".

My interest in the Camino was not because of its history of religious pilgrimage but mainly for its earlier Celtic roots and routes plus the scenery and promise of autumn sunshine without the heat of southern Spain and getting my head together. What I did hope for was that the Camino, having been a conduit for positive thoughts and prayers over more than a thousand years, in conjunction the positive thoughts and prayers of my loved ones ,aided and abetted by relaxation exercise and sunshine, would help rally any internal and external strength that was there for acceptance.

I was not disappointed.

In the first two weeks I experienced a tough and painful journey including torrential rain and storms through the Pyrenees but that did not detract from the heady pleasures of unspoilt forests, simple villages and miles of ripening corn and vineyards in Navarro. The kindness and encouragement of strangers of many nations but especially local people was uplifting and will never be forgotten.

On reflection I must have looked like "death warmed up" at that stage. This seemingly endless, mostly alone, slow trudge, turned out to be a wonderfully soul searching and meditative process. All the time I was visualising the cancer being beaten and opening up to the possibility of that success.

In the medieval town of Estelle I was physically guided by some clergy of the Cistercian church of San Pedro, without request, to the cloisters where I sat alone continuing the thought processes of my journey. After a while I was just filled with such a feeling of tranquillity that I had never experienced in my 63 years and tears of relief flowed silently down my cheeks. I cannot explain this phenomenon or the fact that after immediately discontinuing my pain control, I was totally pain free after two more days walking and the pain has never returned.

I continued my pilgrimage to Santiago de Compostella with much gratitude, a new spring in my step and then on to the unimaginably spectacular coast at Finisterre.

On my return to The Birmingham Cancer Centre in November, no one could explain why in three months without treatment my PSA could reduce from 299 to 99 . Nevertheless I was persuaded that the level was still far too high and eventually in December I agreed to a first stab of Zoladex and two 15 minute sessions of "bone chemo". Within two weeks my PSA was 3.5 and by March 2009, just before my second jab of Zoladex, it was 0.50.

I then concluded that the treatment had satisfactorily reinforced what my body had already started and declined my June and September stabs. In October though I was nagged by my GP into resuming treatment which I did in November as my PSA result from earlier that month showed a rise from .5 to 1.8 in only two months. I still don't know the significance of the two numbers on my results report. The printout reads :- "total PSA level 1.8 ug/L < 4.5 "

I searched out YANA when I recently learnt from a news report that Zoladex could be detrimental to people like myself, with a serious heart condition. The report was based on a study recently concluded by researchers at Kings College London. Only then was I alerted to other possibly more suitable ADT drugs.

Based on this new information, my treatment experiences and PSA fluctuations my gut feeling is that I would be better off on another ADT drug and probably intermittently. (the name escapes me at the moment but the one that prevents attachment of testosterone to the prostate cells rather than Zoladex which prevents production of testosterone, which the heart benefits from ). [David is likely referring to Casodex or Eulexin see Hormone Therapy for Prostate Cancer ] I have also experienced heart incidents in the past 6 months and had recently to drag myself out of a black hole of depression.

I think that the alternative ADT therapy is likely to assist in all these areas and will discuss the options at my next oncology appointment in January. I shall report back fully then but in the meantime post my experiences and findings in respect of nutrition for PC sufferers.

Cheers Dave

Later: I am a "foodie" and keen cook and so not surprisingly I consider my diet as an important part of my treatment. Whatever we all think about the scientific basis of our nutrition, if we believe it is effective it probably will be.

As it happens there is a lot of evidence out there that certain nutrients will help our cause. As a result of my reading and conclusions I incorporate the following into my daily diet and because I am the cook , most of it into the family fare. It is very easy to do:-

COOKED TOMATO AND GARLIC easily incorporated into sauces,soups (hot and cold) and occasional bloody marys.

WALNUTS are added to cereals or as drink snacks.

TURMERIC is added to sauces curries etc and yellow bread, pasta rice and potatoe are very common in our house.

COCOA is drunk instead of coffee and made with SOYA MILK which is also used in breakfast cereal

85% COCOA, DARK CHOCOLATE is a regular treat.

GRAPESEED OIL is used in light frying ,grilling etc.and included in bread making.

BREAD however is the simplest way I incorporate a variation of ingredients into one staple and this is so easy with an electric bread making machine. Typically in a wholemeal loaf I add turmeric, softened garlic, grapeseed oil and often tomato to the basic ingredients. The result is delicious, unless you eat it with strawberry jam.

I just imagine it all in the front line of my war on PC ,seeking out those free radicals and causing any recalcitrent cancer cells to self-destruct. Additionally I take VITAMIN C as a frequent cool drink plus VITAMINS D,E amd SELLENIUM.

Now this may not have a complete scientific foundation but I'm pretty sure it won't do me any harm and the psychological benefit of my self-help I just know will improve my lot.

Cheers for now Dave

My sincere thanks to Terry Herbert,this site and the kind and encouraging people who have e-mailed me since I posted my experience.

 

UPDATED

March 2010

 

 

I saw a new oncologist at Worcester Hospital on 1st Feb and discussed my lack of confidence in Zoladex given my pre-existing CHF I(congestive heart failure) condition A very broad study of 30,000 men wth PCa over several years concluded that that this drug increased the incidence of heart failure by as much as 35% and of heart attack by up to 5% (see King's College website- news item around august 2009)

Seven weeks after that consultation and promised reference to my heart consultant I have no agreement for Casodex v Zoladex I have no intention of reverting to Zoladex, which inhibites the production of testosterone This is because, in support of the King's study, my heart incidents all occurred between 3 and 5 weeks of Zoladex implants.

I have been unhappy wih my lack of testosterone and look forward to agreement to Casodex which is designed not to prevent male homones but to prevent attachnent to abnormal cells. Meanwhile I have no "medical" treatment and will take a PSA test around mid April I feel very well despite my last treatment being 23rd Nov 2009

Cheers Dave

 

UPDATED

September 2010

 

 

My last Zoladex jab was in November 2009 and I later realised that this drug was exacerbating my Congestive Heart Failure (CHF ) which had been under control. By mid 2010 my oncologist had agreed to prescibe Casodex as a replacement therapy.This alternative is supposed to prevent attachment of testosterone to cancerous cells as against cutting off testosterone completely as in the former therapy.

By July I still had not taken the replacement drug, relying entirely on my dietary therapy and have felt very well with my libido and general drive making a come back (no pun intended ). To my dismay however my PSA crept up from 0.8 to 4.5 over less than three months.This was a bit of a shock and three days ago I commenced taking the Casodex and will take another blood test in 3 months months time. Hopefully this drug's side affects will be ok.

Trying to forget all this on a 3 week trip to the island of Paxos tomorrow. Cheers for now and all the best to everyone on this site.

 

UPDATED

November 2011

 

GREAT - my PSA is 265

Well everything is relative, only six weeks ago is was 311.

To re-cap - the Zoladex exacerbated by heart condition and the alternative - casodex turned out to be ineffective in isolation( I understood that it was generally used in tandem with zoladex ). The bone pain returned in the summer with a multiplying PSA and I reluctantly succumbed to Chemotherapy in September. The drug is Taxotere and administerd at 3 weekly intervals till the end of the year. Four sessions down and two to go.

In the 1st week I was very low but subsequently adjusted. Lose weight in week 1, mark time in 2 and replace the weight in 3. Then back to the "poison chalice" The plus side is that the bone pain and need for massive morphine etc input went within one week of the first chemo session. I'm still keeping my hair on AND fervently believe that the treatment will literally give me a new lease of life which I am continuing to enjoy to the full with ongoing travel plans , retirement fu but psuedo- commercial project and family visits.

Later: This is a postscript to my last/recent update :-

For me ,side affects in the week following a chemo session are insomnia and lack of appetite. So here I am, at the computer in the early hours , wide awake and no interest in the fridge contents---what a bummer eh.

I told the family that this taxotere would be great being extracted from plants. Apparently the components are extracted from the periwinkle, pacific yew bark and this sounds great, the asian happy tree. I suspect also belladonna. My pupils do occasionally dilate but that could of course be by virtue of the herby condiment powder acquired by one of my caring relatives.

At the pep talk a week before my first chemo session we were advised by the concerned young medic to engage in safe sex. We could hardly contain ourselves and my fellow survivors on Yananow will fully understand our unstoppable tears of laughter and possibly anguish, on the way home.

Well , I really believe that laughter is the best medicine - so keep laughing everyone. At the risk of "too much information we did eventually follow the young medics advice albeit with even more hilarity (well the affects of the ADT had worn off in more ways than one. At least now , should all treatment options come to an end, I could stop the heart medication and literally "go out with a bang" Enough of that now.

Well some power has kindly folded back a cloud and switched on the light of the full moon.

How beautiful is that. Life is sweet. Night all -and keep suviving.

Dave

 

UPDATED

January 2012

 

Having completed my 6th session of chemo on the 19th Dec 2011 I saw the consultant on the 9th January now 2012. This was mainly to discuss the recommendation for a further two chemo sessions plus future options.

By the appointment date my PSA had reduced to 197 well on the downward trend from 311 some 4 months earlier. Apparently the ongoing treatment after the final chemo session would be steroids which also accompany the current taxotere onslaughts. After that there is also the option to return to the original ADT and/or abiraterone [marketed as Zytiga in the US] . The latter drug is in tablet form and was passed for UK use in September 2011 and whilst not necessarily available everywhere is being prescribed by my local NHS Trust.

I have accepted two more chemo sessions and the final one should be mid-Feb when the situation will be reassessed. As a parting shot at the consultation I told the Oncologist that I had seen a special offer on five year diaries and asked whether she thought I would be wasting money to buy one. She fixed me with her pretty hazel eyes and said that that might be a little optimistic. I didn't pursue the point further. My only regret regarding this drop dead gorgeous lady, apart from the above opinion, is that she has never performed a DRE on me. C'est le vie.

Without being an ostrich, however, I feel sure that she is out of order (maybe on both counts) as I actually feel that I am in better shape now than in August 2008. At that time my PSA was 299 and I felt very ill. Now I am down to 197 and apart from the chemo side affects, very irksome, I feel great. [To introduce another animal into the narrative, in The Elephant In The Room I touch on the inability of the medical profession to forecast events with a deal of accuracy.]

In September 2008 I had set off on my long walk accross northern Spain with a PSA of 299 and returned with it reduced to 99. So at the end of March I plan to walk the 1200km pilgrim trail from Granada in the south of Spain to Santiago in the north west.This route is not widely used and I should enjoy much quieter trails and meditative solitude. For me this activity , I believe , creates more balance in the body and maximises the opportunity for cancer fighting. So bring it on. I can't wait to get through this chemo and on the road.

All the best to all my fellow survivors.

Bye for now Dave.

David's e-mail address is: gasworkswharf@yahoo.co.uk