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Roy White and Irene lived in Western Australia. He was 72 when he was diagnosed in July, 2008. His initial PSA was 7000.00 ng/ml, his Gleason Score was 10, and he was staged T4. His initial treatment choice was ADT-Androgen Deprivation (Hormone) and his current treatment choice is None. Here is his story.

After having a blood test with a PSA reading of 7,000 which was the highest reading my doctor and urologist had ever seen they sent me to have a bone scan and then a biopsy.

The bone scan showed many signs of metastasis and the biopsy had a Gleason reading of 10. My urologist said that cancer had got away from the prostate and that he would start me on 100mg tablet of Androcur 3 times a day.

On July 7th my PSA had dropped to 238 and on October the 14th my PSA had dropped further to 36. Although my PSA had dropped I was having trouble breathing so the urologist took me off the Androcur tablets and gave me a 4 monthly injection of Eligard [should be Lupron - see update below] and said my breathing should return to normal in a few days, but as a double check he arranged a chest x-ray in case the cancer had invaded my lungs, and that's how things are at the moment. My next appointment is on the 13th of November unless the x-rays show lung penetration.

Later: In my first message I forgot to mention that besides my medication I also took some natural anti cancer fighting foods, which were three glasses of Carrot and Beetroot juice three times a day, three cups of Essiac tea a day and 5Mls of Bovine Trochlea Cartilage three times a day with meals. Now I don't know for sure which dropped my PSA so fast the medication or the other natural cancer fighting agents. Maybe it was a combination of both.

Regards
Roy White

UPDATED

November 2008

Hi everyone

I finally got my x-ray results back which showed all clear with the heart and lungs and no lesions seen. My next PSA check is in February so hopefully it will of dropped further. I feel the best I've been for 6 months maybe the alternative medicine I still take is helping.

Regards Roy White.

PS; I made a mistake when I said Eligard in my last letter it should of been Lupron.

UPDATED

February 2009

Hi every one: I have finally had my second 4 monthly injection of Lucrin (aka Lupron) and a blood test which showed a PSA reading of 16. This is a great drop from the original 7,000 reading.

The doctors are pleased with the drop in my PSA readings but are surprised at the reduction over the last six months. I am still taking my alternate stuff (haven't told the doctors about that) so I don't know whether it is helping or not but I am not game enough to stop taking it just in case it is making the difference.

My next test is on the 7th of May.

Regards Roy White.

UPDATED

May 2009

Hi just had my latest test with the PSA reading at 38.0 ng/ml. I have also now one Casodex tablet to be taken daily besides my 4-monthly Lucrin injection, next test in October. My reading is high and the doctor only gives me 2 years but I feel great with no discomfort what so ever at the moment.

So until October all the best and keep thinking positive.

Regards Roy.

UPDATED

July 2009

Hi everyone I couldn't wait until October for my next PSA test, so went and had one this week myself and great news it has now dropped to 6.0 - only hope it keeps reducing. I am still taking alternate stuff to my four monthly Lupron injection and daily Consodex 50 tablet.

I still have my 3 glasses of beetroot and carrot juice, 2 glasses of pomegranate juice, 4 tablespoons of asparagus,1 selenium tablet & 1 multivitamin with Q10 a day, this seems a lot to take but its not costly and I believe it helps.

So until my next check-up in October regards for now and thanks to all that emailed me and gave me the confidence to carry on.

Regards Roy White.

UPDATED

October 2009

Hi everyone great news my PSA is down again to 4.6. The Urologist is amazed and only hopes we can maintain control of the cancer for as long as possible. I am still on the same medication except a dose of vitamin D has been added to my Luprin injections this is to strengthen my bones in case of an accident. Also still taking the alternate antioxidants.

The Urologist tells me that a new drug is now being trialed to treat prostate cancer and that it seems to be the breakthrough all have been waiting for I hope we don't have to wait to long for it to come on the market.

Regards to all, keep thinking positive Roy White.

UPDATED

January 2010

Hi all Yana members!

Well I have been back for my next check up and found that my PSA had increased to 9.4. My Urologist said not to worry about it as I was I was very fit and keeping well and to continue with the same treatment until it begins to get rejected. When this happens, which I know eventually will, I then go onto one of the trial treatments being carried out here in Perth.

Regards Roy White.

UPDATED

June 2010

Hi everyone, well just had my 4 monthly check up and my PSA has risen to 52.0.

My Urologist said that the cancer was starting to reject the hormone treatment but cannot understand how fit and well I am. He has applied to get me into one of the many Clinical Trials going on here in Perth, though they have not yet found a cure they have had great success in extending life for many patients.

Regards to at Yana Roy White.

UPDATED

July 2010

Hi all YANA members I have just been for a CT and Bone scan and it was a great improvement on the last one. I still have metastatic in my sternum and skull but the rest has just about cleared up.

My PSA has gone up to 72.0 so they have taken me off the Cosodex tablets trying shock the system into again reversing the process, I have also started a monthly Biophosate intravenous injection to build up my calcium and strengthen the bones.With all this I am still continuing my Lucrin injections and am waiting for the next clinical trial to start, which should be in the next month or so.

I am still very active and fit and its hard to believe what's going on inside me.

Regards Roy

UPDATED

March 2011

Hi everyone! It's been a while since I have updated. I must thank all that have contacted me and given support.

Well I have just finished my first six months of the trial and it appears that it has been fairly successful.The spreading of the Metastasis seems to have stopped and is pretty well under control. Much of the Metastasis has cleared up altogether but it is a continuing programme, as I now go onto the maintenance programme which is an intravenous injection of Ipilimumab every 12 weeks and I also still keep up my four monthly injection of Lucrin [This drug made headlines in March 2011 when the US Food and Drug Administration (FDA) approved the drug for use in melanoma cases.]

My PSA is up and down one month it is in the 40s and next up to 140. The onocologists and trial people take no notice of these readings but it gives me some concern.

All the best to all YANA members

Roy White.

UPDATED

January 2012

Hi everyone just updating from a hectic year. Twice I went down with Pneumonia and Lung infection but both times luckily recovered ok.

I still receive a Lucrin injection every 4 months and a infusion of Zometa monthly also I take 5mg of Panafcortelone daily which they are gradually weaning me off and also a 5mg tablet of Progynova to help reduce my PSA.

I have been taken off the trial as my PSA went up to high to 280. The remarkable thing that through all this my health is ok and I remain fit and well. I guess that you have to believe and have confidence in yourself and things will get better.

Regards to all YANA members

Roy White.

UPDATED

February 2012

I'm sorry to say my last PSA reading I reported as being 240 in December was wrong.

The oncologist has now told me that it went to 7,400 in December; 6,800 in January and now is 5,500 in February.

They have delayed giving me chemo up to now as I am very healthy in all other areas, but if the PSA does not reduce or it goes higher they will start chemo therapy.

Regards Roy.

UPDATED

April 2012

Hi all YANA members thanks again for those emails I received.

Well I finally got back the latest CT & Bone Scan results my PSA had soared up to 8,300 so they have taken me off the Progynova as it was not successfull. I now have a condition known as metastatic castrate resistance prostate cancer.

The 0ncologist has given me a choice of starting on one of two chemo trials or taking a non chemo trial with the drug Tasquinimod which is in tablet form. As I am in fairly good health with no ingress of the cancer into any organs they suggested the last method. I have looked over the three trials very carefully and have agreed that the Tasquinimod trial is the best. I found the drug company conducting the trial on the net Active Biotech and read their full report on stages 1&2 of the trials which looked very promising ,this stage 3 is being given to about 1200 people over 40 countries and if proven successful should be approved in 2 to 3 years. I am still to get the zometa monthly and the lucrin every 4 months and take the Panafortelone tablets daily.

Regards to all and remember to always think positive.

UPDATED

May 2012

Hi Yana members what an exciting time I have had over the last month.

A few days before the start of my new cancer trial I had a heart attack. Luckily I got to the hospital straight away and had a Angioplasty procedure arranged for next day. It was truly amazing I watched whilst they cleared the blockage in the artery and inserted a stent the whole procedure only took 40 minutes and I was discharged from hospital next day.

A few days later I went to start the cancer trial but the Oncologist said that my PSA had risen to 10,300 and that they could not start the trial at this time. I was to continue with the Zometa and return in a month to see how things were settling down. On returning home I decided to go back on my original alternate medicine whilst waiting and that was a glass of beetroot, carrot, ginger juice each morning a daily glass of pomegranate juice and 4 chorella tablets 3 times a day with meals.

On returning for my next check up the Oncologist said that I would still have to wait another 3 to 5 months to start any further treatment but the good news was that my PSA had dropped to 7,300 was it the taking of the the alternate again or what, I will let you know when I start treatment again just remember don't worry and keep thinking positive.

Regards Roy

UPDATED

December 2012

Hi all Yana members having had a heart attack I was taken off the trial as I had to have a 6 month break before continuing, in the mean time my PSA rose to 15,050 so I was started on chemotherapy straight away and after the 7th treatment the PSA has dropped to 1,040 I have one more treatment to go and then if all goes well I start a trial on Arbiraterone in February or early March. The only other problem I have at the moment is dizziness which has something to do with my heart and is presently being checked out. Thanks for all your enquiries and best wishes regards Roy White.

UPDATED

May 2013

Hi Yana members thought that I'd better give an update on my progress. After my ninth session of chemo, it's been stopped as every time I had it I spent at least a week in hospital with after effects which were collapsing unable to stand, blood count low requiring several transfusions and finally a massive hemorrhage, besides that I got an infection in my fusaport and had to have it removed. At the present I'm only having Zometa monthly and Lucrin 4 monthly. This treatment will probably change after I have bone scans in the next few weeks. It is truly amazing how good my health is at the present there certainly must be someone up there looking after me. Once again thank you to all that have sent me emails of support and suggested help.

Regards, Roy

UPDATED

December 2013

Once again hi all Yana members. Except for continuing my monthly treatment of Zometa & 4 monthly treatment of Lucrin all other treatment has been suspended for several months. The reason for this was that I had much trouble breathing and could only walk short distances before becoming breathless.My Cardiologist carried out many tests before finding that I had a severe blockage in my left main artery this he fixed by clearing out the blockage and placing two stents in, my breathing has now returned to near normal again although it will never be the same.In the mean time my PSA has gone up very high,but seeing Xmas is coming up my Oncologist is waiting until the new year until I get some scans and then decide on what further treatment I shall have. I myself feel very well the high PSA does not seem to be affecting me and the Oncologist is not too worried about it at the moment.They will not treat me with Arbiraterone because I will not be able to go back on chemo if required. Just remember to keep thinking positive and best wishes to all.

Regards, Roy

UPDATED

June 2014

Hi all Yana members thank you for your enquiries and support given to me it is great hearing from members way down here in Perth Western Australia.Well after a year of just getting treated with my monthly zometa and 4 monthly injection of Lucrin with Predislone daily my PSA went up to14,500 so they quickly started treatment with Chemo. After 4 treatments my PSA had dropped to around 800 and they are now considering starting on Aberaterone after my next Chemo session in July. After the first Chemo session the side effects put me in hospital for 8 days I had 5 blood transfusions anti Anti biotics and recovered ok. The second session was not as bad and I stopped at home with only light headiness and shortness of breath. The 3rd session I had severe constipation, light headiness and returned to hospital for another week and after another blood transfusion and more Anti Biotics I was once again released ok. I am just hoping that the side effects are niot so bad after yesterdays treatment. Besides having all these side effects problems I have great support from my wife and family which really keeps me going. As I always say keep thinking positive and my best wishes to all.

Regards, Roy

UPDATED

October 2014

Hi Yana members, well I finally finished my second course of Chemo and the side effects were not really good as I ended up in hospital after most treatments, but it did drop my PSA down from 11,500 to 4,900. My PSA went back to 7500 after a two months of no treatment and now they have started me on Zytiga and already my PSA has dropped back to 5,400 after a fortnights treatment. My health is now good the only exceptions are shortness of breath and a little giddiness which are some of the side effects of taking Zytiga. I can only hope that my PSA keeps on a downward spiral. Just remember believe in yourself and always keep thinking positive. l wish the best to all members.

Regards, Roy White.

UPDATED

September 2015

Hi everyone I thought that it was time I updated my story as I am getting many emails asking how I am going and many suggestions to try out different treatments. Although my PSA got up very high over the years but with the treatment of taking zytiga tablets it has now dropped down to 4,440 which is the best it's been for a long time. I am not worried much about my PSA but more about my Metastatic cancer, it has not seemed to spread any further so I have to wait for scans in November to find out how's it's going. My Oncologist thinks I may have to go back on chemo if the scans are not good and that's something I would not look forward too after the trouble I had last time. I would like to thank all that suggested trying other treatments but my Oncologist has kept me going over seven years now and I have full confidence her treatment. I wish all members well with their treatments and always remember to keep thinking positive. Regards Roy.

UPDATED

January 2016

Hi all Yana members I thought it was about time for an update. I am still taking the Zytiga tablets and every month get my infusion of Zometa and every 4 months have a Lucrin injection. My PSA has slowly dropped down to 400 and I am feeling as well as I have been for a long time I can once again put an hour or two into the garden. I had quite a big house and property to look after which got too much for me me so I sold up and built a Granny Flat on my sons property which was the best thing I have ever done. When I look back at the time my PSA reached 15000 I fully believe that the man upstairs is looking after me. Regards Roy

UPDATED

February 2017

Hi everyone I thought it time to update my story. After the Zytiga dropping my PSA to 400 it started to rise again up to 11,000 so back onto chemo for a 6 month course which dropped the PSA back to 460. I now have been off the chemo for 3 months and the PSA is now 3,600 when it reaches around 6,000 plus they are going to put me back on a chemo course again. In the mean time I am feeling quite well the only problem being a little unbalanced on my legs, the Oncologist suggested that I do leg exercises which I will attempt to do without tumbling over. I am still getting a monthly infusion of Zometa and the 4 monthly injection of Lucrin so until the next update keep well and keep thinking positive regards Roy

UPDATED

October 2017

Hi everyone I have had some up and downs since my last upgrade my PSA went back up to 11,500 and I was started back on chemo again (Cabazitaxel) which dropped it back to 420. The after effects were very bad I ended up with severe diarrhea and put in hospital whilst there I got a virus between my bowel and liver, it took the doctors 10 weeks to cure it but it left me unable to walk. I am now at home with a personal trainer coming twice a week and with her help it looks like I will be walking ok again by Xmas, other than that my health is very good. The only tablets I'm taking now are premedsalone, pain tablets also the Lucrin every 4 months. I'm to see the oncologist in two weeks time and have a check up I only hope there won't be any more chemo as I couldn't take much more of the after effects. My thanks to all that have emailed me and wish everyone good health in the future. Regards Roy White.

UPDATED

November 2018

Hi everyone it's been sometime since my last upgrade since then it has been decided my that metastatic prostate cancer is resistant to all forms of treatment that I have received over the past years so now I have finally been given approval by the government to do the course of Xtandi tablets which they have just released on the market, before being released they were far to costly for us normal people to afford. It was a bit of a hassle for the oncologist to get approval as the government is very strict on the requirements before giving approval. I also have another problem after years of working out in the sun without using proper head gear I have developed several bad cancer spots on my head which they were going to treat with skin grafts. Luckily my GP told me about the Genesis Cancer Clinic who are now using a new type of radiation treatment where they can control the radiation to within a millimetre. I start treatment next week which will go for 6 weeks 5 days a week each treatment goes for about 12 minutes they tell me my head will be clear of any cancer spots after that. I only hope that all these treatments will give me little more time. Thanks to all that have shown interest in my problems and just remember to keep thinking positive no matter what. Regards Roy White.

UPDATED

June 2019

I would like to let everyone who has been following Roy's story know that he finally lost his battle with cancer. He fought bravely for a long time but could not hold on any longer. He was very loved by family and friends and will be sorely missed. I am sure he would want to wish you all good luck and to keep fighting.


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