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An Update from Lee aka Popeye


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This is for members who may be interested in my little adventures with this disease. Since my salvage prostatectomy, cystectomy, appendectomy back in November 2014 my PSA remained undetectable until 2016 and then started rising. Over the past 18 months the PSA was doubling approx every four months. In March 2017 when my PSA was 0.26 I had a PSMA gallium 68 scan that was negative so I was back to just hanging about. My PSA recently hit 1.8 and I have just returned from Townsville after another PSMA scan that returned positive results. The news was good and bad news. Bad news because there were two mets discovered with another area suspicious. Good news because my mind was expecting much more invasion than was found. I have one 10mm tumour adjacent to my S3 vertebrae and another 10mm tumour adjacent to my rectum. The suspicious reaction was in an area near my left ureter of my urinary diversion. Interestingly no bone reactions just tissue related stuff.

Members of this forum may be surprised that I had almost made up my mind not to have any treatment based on the results of the scan if it was real bad news. My previous experience on eligard ADT and search information on chemo that I have read about led me to that decision. I was not looking forward to a downward spiral in my quality of life on these treatments. I figured my QOL at the moment was reasonable and the fact that I will turn 71 in September will do me nicely thank you and I was not looking forward to senility with adt and chemo brain.

Discussion with my urologist in Townsville has changed my attitude somewhat. He was sympathetic to my arguments but has suggested I go back on ADT using firmagon which is different than the luprons etc. The downside is of course the injections are monthly and painful for some patients, he then gave me two things to ponder about while making a decision. Firstly he guaranteed that firmagon would put these lessions to sleep for at least two years and secondly I could always choose to stop the firmagon at any time. So I have re-thought this matter since my visit and the fact that the lessions are small in number I have decided to give firmagon a go and see where it leads to.

On a related matter the patient travel subsidy scheme recently declined my application for this latest visit to Townsville. Their reason for this decision is that the Mackay Base Hospital now has a resident urologist and my treatments should be done locally. I have appealed this decision and am hoping to take this further. While I have no issues personally with the resident doctor my preference is to stay with my urologist in Townsville as we have built up a mutual respective doctor patient relationship. He was the surgeon who demonstated great skill in my salvage surgery in 2014 and has carried out numerous other procedures prior to and since that time. My belief is that this medical relationship should continue for the betterment of my chronic condition. While I will be able to afford to travel the 1000km return trip and pay for accomodation there is sure to be other chronically ill patients who will not be able to do so. I accept that the public system has the beaurocracy to rigidly adhere to rules and that I am a public patient now. The original reason I went to this doctor was because I was then in private health and the Base Hospital in Mackay did not have a resident urologist at the time. Thank you for reading this.

Popeye

 

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Popeye

Thanks for updating us.

I have so far had 39 Firmagon injections.

The dose is per 28 days, not monthly. (USA Oncologist Stephen Strumm says the difference is important.)

So I have mine every fourth Monday - easy to prebook for many months ahead.

For me the injections themselves are not especially painful, usually.

But after the first couple of hours a histamine reaction happens, and I often feel unwell overnight.

I think of it as my "time of the month" and have to be satisfied knowing that "this too shall pass". 

My last injection was yesterday at 2pm, and things are back to normal this afternoon.

 

I feel a bit of a wimp talking to others on Firmagon, because some of our members have reported no real problems, and a guy I met at the PCRI conference in Los Angeles had had 5 years without problems.

 

All the best with your decision.

Jim

 

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Hi all, Popeye I think that you have a very brave urologist to guarantee that you will get 2 plus years on "Firmagon" I started Firmagon with Chemo in April 2017 and Oncologist said that I should get between 2 and 5 years on Firmagon but unfortunately I only got 8 months before PSA started to climb again. I did think that it was fantastic that it could get my PSA down from 340 to 0.14 in 2 months. The problem that I had while on Firmagon was the pain around the injection site which would last 2 weeks. I wish you the best of luck with your treatment and hope that you get the maximum benefit.

When I have some time and more energy I will post the details of my journey with this disease.

Thanks Geoff.

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Jim/Geoff: Thank you for the replies. I realise treatment is a bit of a raffle and different results are scattered about for every individual to pick up the pieces and move on. Given the fact that I was contemplating no treatment at all I have now accepted the offered plan by my urologist to at least give firmagon a go and see where it leads me, I can always chuck it in the bin if it drives me mad or PSA rises again in a short time. I think the two years guarantee was based on an average weight of results and I understand the odds. I still figure its the way to go for me as a personal trial and a bit like tossing a coin. Lets see what the next two years may bring. Thank you both once again.

Lee

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  • 2 weeks later...
Nev Black

Hi Lee   Have you had your Firmagon injection?

If so, how did it go.

All the best Nev

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Hi Nev, you must be psychic as I had my double banger starter shots yesterday. First injections are actually two 120mg shots to begin with and the injections themselves I hardly felt at all. My mind went back to my 3 month Eligard shots way back in the past and I remember those very well in regard to the horse needle used and the shock of banging those in. These two firmagon needles were very much in the gentleman class and I was thinking " This is great." A few hours later and especially throughout the night the gentle man medication turned into a thug and started beating up my stomach area.

Jim stated in his reply that he treats it as his time of the month and I guess I will most likely do the same. I see Jim calls it a histamine reaction and that may be correct but I would describe the reaction as like an ache and a restriction in bending, sitting or turning. A couple of panadol helped a bit and I feel as the morning goes on it is easing somewhat.

It will be interesting for me as time goes on to compare the side effects and severity of Firmagon and Eligard. I will try and remember to do an update a few months down the road. In any case I am off on a new adventure " Second star to the right and straight on till morning"

Cheers

Popeye

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