NETHERLANDS July 2001: Saw GP with complaint that passing water "seemed" restricted. After the compulsory finger up back passage, he sent me to see urologist in hospital. Ultrasound revealed suspect tissue on both left and right side. Biopsy revealed cancer (T2G2NxMx).

Aug 2001: Had bone scan. Clear!!

Oct 2001: Urologist discussed options with me and I decided on Radical Prostatectomy. Was operated on Oct 9 and was discharged on Oct 15. Oct 30 catheter removed. So far so good, I was happy.

Nov 2001: Post-op findings:
- PC not confined to gland;
- One lymph node positive for cancer;
- Post-op conclusion by Pathologist: pT3G3N1M0 [i.e. Gleason Score 7 or 8 maybe 9, stage T3 with lymph node invasion but no evidence of metastasis]
- Pre-op PSA 19.6: post-op PSA 1.1
- PSA now (November 2001)0.4

March 2002: PSA 0.9 so obviously cancer still "ticking away" somewhere in body. Problem for urologist, he does not know where, so he says he cannot treat it. I insist on some form of treatment and he puts me on Casodex.

UK October 2003: Posted to UK. Saw oncologist at Royal Marsden in London. MRI-scan performed and advised that I should benefit from "Radiation Therapy".

UK November 2003: Had Radiation Therapy at Mt Vernon Hospital. Lasted 5 weeks. No side effects apart from cramps and "loose bowels". Soon disappeared. PSA after radiation 0.2 Me very happy!!!

UK 2004: Had another bone scan: Clear!!

UK 2004 - 2008: Watchful waiting. PSA slowly increasing. From 0.2 to 7.0. Blasted PC just won't give up. Thing that worries me is that it doubles every three months for the last twelve.

UK Sept 2008: I am told not to worry. Chances are that I will die of old age rather than from PC.

UK Dec 2008: Had another CT- and bone scan. Oncologist very surprised with results considering relatively low PSA: Now have secondary cancer in lower spine, ribs and lymph nodes. Bit of a shock!! Especially when told that my quality of life cannot be guaranteed past 2009.

UK Feb 2009: After playing with the idea for a few weeks, I have now taken early retirement and am enjoying life with my wife. In the mean time I am on "Zoladex". Lets wait and see if it makes a difference. Will keep you updated.

Later: After having been prescribed Zoladex in December 2008, my PSA dropped from 7.6 to 0.2 in March 2009.

When discussing this with the oncologist, she agreed that the PSA value itself was only an indication, but that the significant downward trend was a good indication that the Zoladex was working. When I asked her how that would affect my (secondary) bone cancer, she replied that it would most probably restrict/halt its growth for as long as the Zoladex was working which could be anything from 3 months to 2 years.

So the obvious question to ask was: is it not time for another bone-/CT scan to find out if the Zoladex is actually working? She agreed, but also said that since it was only 3 months since my last scan it would probably not show up any significant difference. We agreed to do another scan in another 3 months.

If any of you have a similar experience I would like to hear from you.

Keep in touch, Henk

Have been on Zoladex since December 08. Last PSA in June 2009 0.1. Discussed the merits of a Zoladex "holiday" with oncologist but was advised not to do so unless I suffered serious side effects which I do not. Side effects so far are: no sex drive at all; putting on some weight, but that might also be the beer!! and I noticed that I am losing my chest hair.

Have tried early retirement but decided to go back to work part time (50%) in September. Think it will be better for me and especially my wife!!

Will keep you informed of any changes.

PSA check: still 0.1 Zoladex still working. Very happy about that!!

Asked about the merit of another scan. Was told that this was not necessary as long as the PSA did not show an upward trend. Still the usual side effects but not bad at all. Mustn't grumble. Also still working part-time. Keeps everybody happy.

Had to shop around for travel insurance; most of them not very keen on my medical condition. Obviously anything to do with cancer is excluded and I mean anything. If I were to trip and break an arm they would contribute that to the bone metastasis even though there might not be any in my arm. Not to worry, just tread carefully!!

When applying for a new mortgage I will not lie, but if they don't ask, I certainly won't make them any the wiser. That is it for now. Will keep you informed.

Whatever it is that you still want to do, go do it and above all....enjoy it!!

UK Dec 2009. Zoladex still working. PSA steady at 0.1. Not sure how much longer this will continue, but grateful for every month that it does. Will see oncologist again in March. Was told (once again) no new scans untill PSA shows steady rise.

Symptoms and hormone side effects have not changed. Oncologist increasingly interested in my bowel movements. Did not ask him why, but as things had not changed did not want to either.

Will keep you informed of the results of my March visit.

PSA still stable at 0.2. Had bonescan to determine if Zoladex caused any form of osteoporosis (apparently a well known side effect). It did; had developed mild form of osteoporosis so I was put on calcium supplements. [It is amazing, given the evidence available, that men are allowed to develop osteoporosis rather than being given preventive medication before the condition manifests itself.] Other than that, everything still the same. Determined to go for a "Yana Gold Medal".

Still here and still working. Last PSA check slightly up: 0.3. Although rising trend, it is minimal and no cause for worry just yet. Not until rising rapidly according to oncologist.

Now wants to see me every six months instead of three months. Call me suspicious but I did not like the idea. Settled on every four to five months. Still on Zoladex 10.8mg every 12 weeks. Side effects same, but nothing too bad. Still taking Calcium supplements.

Making time for me and my wife. Have fun and enjoy yourselves. [And congratulations to Henk on hitting Gold Status - in his tenth year since diagnosis.]

June 2011 Another PSA check and another appointment with the oncologist. PSA still steady at 0.3!! Oncologist happy with result. Me very happy!! Long may it continue.

Became "Gold" member. Must give others hope that everything is not doom and gloom after diagnosis. Sure, PC won't go away, but it does not necessarely stop you from living a normal happy life for a fairly long time.

I keep mentioning oncologist but actually have only seen him twice. He seems to have an always changing group of (international) "workstudents" as I see a different docter every time I go for my appointment. I am sure they discuss different patients before they see them, but it still gives me a slightly uncomfortable feeling. To be fair, when I insist on seeing the "big man", I can.

Will post again when there is any news. Be happy!!

PSA in October 2011 still stable at 0.3 Went back in February 2012 and PSA had risen a fraction, now 0.4. Oncologist not worried and me neither. Apparently time to start worrying is when PSA starts doubling or reaches double figures according to oncologist.

Have been on Zoladex now "non stop" since December 2008. Apart from the "usual" side effects, it is increasingly affecting my ability to concentrate and is also playing havoc with my (short-term) memory. Read somwhere that hormone (oestrogen) patches, like the ones that are used by women in the menopause, might help with the memory problems. Oncologist not convinced.

Discussed a Zoladex holiday, but as it is still working, I am of the opinion:"Do not fix what isn't broken". So for now I will continue with Zoladex and long may it last!

Had another PSA test in June. Although different lab this time, result still 0.46 so no change really. Now that I am retired from the military, I am under the care of my local GP. Have decided with him that I should continue with my Zoladex injections every 12 weeks and also still have a PSA test every 4-6 months. As long as the PSA does not rise dramatically, I will not go back to the oncologist. Only if PSA rises rapidly, or I get unexpected symptoms will I get back in touch with oncologist. He agrees. Saves me a lot of bother with going to the hospital and trying to find parking places etc. So all in all everybody happy.

Now that I have retired from the Air force, I found that I could do with a little extra money. (Pension is in euros and exchange rate with GBP not exactly favourable). Also, I was not ready to sit on my backside and do nothing (tends to drive my wife potty). So found part-time job with the local council. Once again, everybody happy.

So there you go...... >10 years ago they frightened me by saying that: "I would not get as old as I thought" after discovering (after the total prostatectomy) that the PC had already spread. And three years ago, after PSA started rising rapidly and bone metatasis were discoverd and was prescribed "Zoladex", they said that "on average" Zoladex was effective for about 2 years. I am still here; I am still working; I am still enjoying my life and I try to have a holiday twice a year.

So, whoever reads this, do not despair. Averages are just that. With a positive attitude and lust for life, you could go on for ever!!

PSA checked again in October. Now 0.86, not exactly doubled but an indication that ADT started to stop working. Oncologist suggested to add Casodex to the Zoladex in the next few months. Will wait till my move back to Holland is behind me and I have had a word with my new GP and new oncologist. I will let you know what they suggest after I have seen them.

We have moved back to The Netherlands in November. I was referred to the urologist and saw her on Dec 10th. My PSA has now risen to 1.0; not an enormous value compared to some of you, but still an increase which indicates that I am getting ADT resistant. No great surprise, (slowly) rising PSA levels whilst in the UK already pointed towards this and let's face it, over 4 years successfully on Zoladex is not bad going.

The urologist still hesitant to add Casodex. She would rather use it at a later stage. Somehow this makes sense to me.

When I enquired if there were any other options once ADT resistant, she answered no unless you count chemo . Kind of knew that too. So for now it is a matter of continuing with the Zoladex, checking the PSA every 3 months, maybe another bone scan in the new year and staying optimistic. So far it has done me no harm.

No bone pain yet, just the usual Zoladex side effects. Some of them awkward, some of them (slightly) annoying, but small price to pay to prolong life.

I'll keep you posted.

Had telephone consult with urologist. PSA had gone up from 1.4 in March to 1.6 in June. Not much of a rise really, so urologist and me fairly happy. Still on Zoladex 10.8mg every 12 weeks. GP now happy for me to inject zoladex myself. Apart from the usual side effects from ADT (see previous entries) nothing new to report. So all in all, I am happy and I feel good. Long may it continue.

P.s. Terry, I no longer live in the UK. Maybe you can find a little Dutch flag for me? [We did.]

Had another PSA check. Now 1.9, so slow increase. Must mean that Zoladex is still (more or less) effective. Urologist (and I) are hoping that the PSA rises in the future will maintain this slow rate. Who knows, I might live till a ripe old age. I still live like any other person, no special diet, no drinking gallons of fruit juice or anything like that.

Had an appointment with urologist on Jan 10 2014. PSA almost doubled in last 4 months. (from 1.9 to 3.6). This is what we did not want to happen.

I was warned, when I still lived in the UK, that as soon as the PSA values started doubling every 3 months, the Zoladex was losing its effectiveness. Apparently this is what is now happening.

I was advised to stay on Zoladex for the (limited) effect it might still have and I have agreed to this. As far as further treatment is concerned, the only option I was given (and was expecting) was chemo therapy which I declined. My personal opinion is that I would rather live for another year with the help of painkillers if needed, than for a year and a half, feeling sick with the side-effects of the chemo. It is a personal choice.

I still feel perfectly well and go about life like anyone else would, with no pain or adverse effects yet.

Watch this space, I might just surprise the medical world with what is possible with a positive attitude.

Will keep you posted with developments as they occur.

I have seen urologist again this month. PSA now 4.4. We discussed adding Casodex into the mix, but urologist would rather wait until PSA is higher or rises faster.

We also discussed the treatment with Radium 223 chloride in the future. This treatment is still fairly new in The Netherlands and will probably be available in my local hospital by the end of the year. Urologist thinks that I am a suitable candidate, but not just yet. Matters have to deteriorate first. I am still trying to get more info on this treatment, but am seriously considering it when the time comes.

I saw my urologist this month (Dec 2014) and PSA has risen drastically again, now 9.6. Casodex has now been added to the Zoladex. I will find out if this has any effect in March.

We talked about Abiraterone but apparently hospital policy does not allow the use of Abiraterone unless chemo has been tried first. (must be something to do with the costs). As I refused chemo, it appears that Abiraterone is not for me, at least not in my local hospital.

I will pin my hope of life extention on Radium-chloride treatment when the time is ripe.

I'll let you know how things are in March.

Happy New Year!

Have seen the urologist today, 3 months after Casodex was added to Zoladex. Against all my expectations it worked. PSA now down to 3 from 10! Long may it last.

We have also spoken about the next step, when the present combination of Zoladex plus Casodex stops being effective. In the past chemo (Docetaxel plus Prednisone) had been suggested. I was (for personal reasons) not prepared to have chemo, but I was told that skipping chemo would prevent me from being eligible for Abiraterone.

This is no longer the case. If the current combination of medication stops working, I can start on Abiraterone without first having to endure chemo. I am very happy about this.

Next visit in June. I will keep you posted.

After having daily Casodex added to the 3 monthly Zoladex, the results are fantastic.

PSA dropped to 1.8!!

If PSA drops below 1 at my next visit in 3 months time, the urologist wants me to stop the Casodex so that my body does not get used to it and the next dose, when required, will have a similar impact.

Lets hope for the best. So far I am happy with the way things are progressing.

I have no bad side effects from the present medication and can live my live like any other man of my age.

Happy days!

I hope that my story can help some other PC sufferers. As you can see, it is not all doom and gloom. You can survive for a long time without any serious (side) effects.

PSA is on the rise again. It seems that the effect of adding Casodex to the Zoladex has worn off. I was advised to continue with both for the time being so I will.

Once again, chemo was brought up as the next step and again I declined. Let's see if they are as good as their word and deviate from protocol and allow me Abiraterone.

Still feeling perfectly ok.

Will keep you posted.

Sorry I'm late with this. I saw the urologist in Feb and it came as no surprise that the PSA had gone up again. However, it rose not as fast as before. So we decided to to nothing else for the moment.

If it starts to rise more rapidly, the first we will try is an increase in the Casodex dosage.

If that doesn't work, and having declined chemo, we will give Abiraterol or Radium223 a go.

Be lucky!!

PSA has gone up again. From 2.6 to 3.6 in 4 months. Could be worse. Have declined chemo again. Will continue to take the medication (Zoladex and Casodex). So far no serious side effects. Feeling well. Long may it continue.

Have seen the urologist again and PSA has risen from 3.6 to 4.2. The increase was expected, but it is not too bad. As long as it does not double every 3 months I am not too worried.

I also mentioned that I sometimes passed blood. That was something she did not like, so I was back 4 days later so that she could have a look around in my bladder. Surprisingly, in the area where my prostate used to be, there is now a small growth inside my bladder. According to the urologist, this is a re-growth of prostate tissue and no doubt cancerous. However, as it is in the area where they operated and where I had radiation, she is afraid that the healing process after removing it might be compromised. I.a.w. chances are that the cure would be worse than the ailment. So it was decided to do nothing about it for the time being but to keep a close eye on it.

So, all in all, keep taking the medication and don't forget to breathe!

Long may it last!

Seen the urologist again for my 3 monthly check. PSA up from 4.8 to 6.0.

Increase was to be expected, but within the expected range.

Nevertheless Casodex (Bicalutamide) dosage increased from 50mg/day to 100 mg/day.

So far no physical problems.

Have asked what the particular problems were with removing the growth inside my bladder.

Apparently it might leave me with a hole in my bladder, so for the time being we will stay put.

Have experienced (sometimes) extreme urge to pass urine. Only severe concentration stops it from happening (most times). According to urologist this is due to growth in my bladder. As it is suspected to be (cancerous) prostate tissue, she prescribed Tamsuloscine HSI, a prostate relaxant. I will let you know if it helps.

Updates in another 3 months.

On May 22 I saw my urologist again. PSA has risen from 6.0 to 6.8 in 4 months. Its not too bad an increase (yet). She had also tested me on testosterone which was 0.

The Tamsuloscine HSI that I was prescribed actually works reasonably well. I still get the occasional urge to pass water, but it (the urge) is a lot less now.

No "news" on the growth in my bladder. It does not yet give me too much discomfort.

So all in all I am not displeased with the "progress".

There was one thing that bothered me though. When I was waiting at the urology department for my appointment, I read an article that claims that there is a correlation between (long term) use of ADT (Zoladex, Casodex, etc.) and the early onset of dementia.

I did some research on-line and guess what? Out of nearly 10.000 persons that were investigated (of which nearly 2000 were on ADT), it transpired that the ones on ADT were more than twice as likely to develop dementia. For more info see links below:

www.oncnursingnews.com/web-exclusives/adt-and-dementia-link-gains-evidence-in-recent-update

www.realnatural.org/androgen-prostate-cancer-therapy-dementia

The reason that it bothered me is that I have been on ADT for nearly 9 years now and my wife has been telling me for more than a year that my memory (especially short-term memory) has deteriorated significantly. So much so that I started to notice it myself. I contributed it to side effects of the medication and I was right, but not in the way that I thought. I am worried that it might very well be the beginning of dementia.

So what to do?

Keep taking the medication and live longer, but not notice it because you don't know any longer who you are, where you are and who the person is who is claiming to be your wife.

or

Stop the medication, live not as long and be fully aware of it.

Something to think about. I certainly will.

If anyone has similar experiences, please let me know.

As always,........don't let the beast get you down.

I saw the urologist last months and no surprises the PSA has increased again. It is 8 now. I am not surprised but do not like the progressive increase in the 3-monthly value.

Also, she wanted another look at the tumor growing in my bladder. It turns out it is starting to obstruct the exit of the bladder. I.o.w. I will get more and more problems relieving myself. So we decided that it would have to be removed.

Risks involved with this are: bladder infection (easily treatable), bleeding (also treatable) and long term incontinence. It is the last risk that bothers me.

I will have the procedure sometime in November and will keep you updated.

On November 10 I had my surgery to remove some of the tumor that was growing inside my bladder.

After a period of peeing blood (only occasionally now), a burning sensation when peeing (all gone now) and a small period of incontinence (thank God it was only temporarily) all is well now with my waterworks.

I saw the urologist last week to get the post-op results. No surprise the pathologist defined the tissue as prostate cancer tissue. Also not a surprise but still something to worry about is that he gave it a combined Gleason score of 10. Apparently it was rather abnormal and aggressive.

I had hoped that my PSA would have dropped after the operation and it had, but not by much. From 8 to 7.6.

In January I shall see the urologist again and talk about what is next, but she already hinted that there is not much more that she can do apart from continuing as we are.

In the mean time I feel fine and have no pain. Long may it continue!

I will update again in January.

I saw the urologist this week. The removal of (part of) the tumor in my bladder did nothing for my PSA. It had gone up to 9.8. It is not what I had hoped (against all hope) for, but then again it is just a number. I still feel remarkably well.

We (the urologist and I) had a short discussion on what treatment there was left, taking into account that I have refused chemotherapy. The short answer is no other treatment, so I will continue with zoladex and casodex and see how far it gets me. Up till now it got me quite far.

The only other treatment possible is radium 223 to help with (the pain of) bone metastasis. She is of the opinion that it should be used when I start to experience bone pain. I on the other hand think that it might be beneficial to start earlier. Kill it (the metastatis) in its early stage before it gets painful. Apparently there is no data on this yet. If any of my followers has any info please contact me.

As always, stay cheerful and upbeat for that is half the battle won.

In the beginning of this year I decided that seeing the urologist every 3 months was a waste of time, both for her and for me. The message was always the same: yes your PSA has increased again, but that was to be expected and no, there is nothing more we can do. (Taking into account that I refused chemo).

So we decided that I would see her every 6 months and that in the interlaying period (3 months) I would get a telephone consult.

As you will know, in November last year they removed a tumor (Pc) from my bladder. Apart from some minor inconveniences all is well with my waterworks. PSA went up from 9.8 to 10 in may, but has gone down to 9.5 now (September). Thank God for small mercies. I know these are just numbers, but the fact that the PSA has now more or less stabilised (for the time being) instead of increasing, must be good news.

So, all is well as far as I am concerned.

I will let you know if anything changes, otherwise I will update again in months.

No sooner did I get lulled into a (as it turns out false) sense of security, then this happens. After PSA had more or less stabilised, I had a telephone consult with the urologist beginning of Dec. It turns out that PSA has risen from 9.5 to 16.

I know these are just numbers and that there are men with a PSA running into the high hundreds and more, but it worries me.

When I was still in the UK, my then oncologist told me that I should not worry too much until the PSA started to double every visit which was then every 6 months. It looks like I have arrived at this point and perhaps I am right to be concerned.

I am not too sure what the next step should be.

Replacing one hormone treatment for another seems pointless. Ra 223 might be the way forward, but it can affect your bone marrow so I am not yet sure. The urologist however does not consider it until I get bone pain?! Also, it is not cheap and therefor not considered as just another treatment you can choose from. There is a strict (and as far as I'm concerned) very conservative protocol that oncologists/urologists have to stick to.

So we are back to chemo. One of guys who followed my story, contacted me and said why not try chemo. It might work in delaying the progress of the PC. And if you react badly to the side-effects, well you can always discontinue. He has a point.

So there we are. Lots of things to think about.

In the mean time, I am pain free with no really bad side-effects from the present medication, so bugger the PSA.

I am planning my vacation for next year and will stay optimistic throughout.

Keeping my pecker up (contradiction in terms when you are on zoladex and casodex) but you get the drift.

Will post again in 3 months.

All sorts of things are happening.

Just over a year after I was operated on a tumor in my bladder, I started passing blood and bloodclots. Sometimes so severe that I could not pee until (after much pressure) the clots got passed. It frightened the hell out of me. The urologist put it down to the operation. I was doubtful, almost a year without any problems and now this?! And why did they not warn me?!

Anyhow, it all sorted itself, so the urologist was right. Just wished she had warned me that this could happen this far after the operation.

PSA is now 19. It just keeps increasing. My hospital is just a regional one and they do not get involved in immunotherapy or any other kind of state of the art investigations into PC. They have given me the opportunity to go to Amsterdam, Nijmegen or any other university hospital that is more up to date. But that would involve 5 hours traveling plus the time in hospital every week? And I would still not be sure that I was not part of the reference group (placebo), so I declined. I would rather enjoy the time I have left enjoying myself rather than traveling and waiting.

Anyhow, I got some good advice from Chris (a member of this group) who got in touch with me, and I have now decided to give chemo a go. I have an apointment with the oncologist on the 25th of Feb. I will let you know what I will decide, but nothing will happen before I take my holidays in May.

All in all, I am still happy and can still go about my life without pain or major disabilities.

Long may it last.

Henk

Another update, as things are moving along.

I saw the oncologist earlier this month, and gues what.......apparently all sorts of treatment are available to me, even in this provincial hospital. I can understand that the urologist had no more treatments to offer, but why not send me to the oncologist straight away? Why wait till I said that finally I would consider chemo? I shall have a word with her about that!

Anyhow, depending on the scans, she would consider radiation treatment for the tumor in my bladder; treatment with radium 223 for the bone metastases; chemo or a combination of all three. What a difference a day (=specialist) makes!

I've had my scans. Apparently nothing significant showed up on my bonescan,....great!

But on my CT scan my bone metastases did show up?! Still in the same places, lower spine, neck and ribs. However, not bad /significant enough to get worried about. So we will keep Radium 223 for a later date.

The CT scan also showed no problems with my lungs, kidneys and liver.....great! So chemo is also reserved for a later date.

She has however told me to discontinue Casodex (bicalutamide), keep taking the Zoladex (Goserelineacetate) and has added Zytiga (abiraterone) and prednisone. I shall give this new regime a go and see if it works.

I have also enrolled in a trial where they take a biopsy, (next Friday), to determine the DNA anomalies of the tumor. They then look in their database to see if there is experience (with other types of cancer) where these specific anomalies have reacted favorably with certain medication/treatment. All in all it will/can hopefully personalize the treatment you receive. I think it is worth it. If it does not benefit me,it will benefit someone else in the future.

If all of this does not work out, there is always the Ra223 and chemo to look forward to.

So there you go. You think that you have come to the end of the line, and all of a sudden there are a lot more opportunities available to you. The morale is....... never give up!!

I will keep you posted on any developments.

P.s. Thank you Chris for enlightening me!!!

Hello everyone,

A quick update. I have been on zoladex (for many years now) and now also on abiraterone and prednisolone (for a month). No adverse effects so far. Initial bloodtests show normal liver and kidney function. Next week another bloodtest with liver-, kidneyfuction and PSA and testosterone levels.

After the biopsy of the tumor growing in my bladder, (the things you have to endure to help the medical profession to find a cure for PC), I have stopped passing blood and bloodclots. Much happier now!

Lets hope that abiraterone is showing results.

I will update again next week.

Be positive and keep going!!

Hi everyone.

A quick update. After a month on Abiraterone and prednisolone (and of course still Zoladex) I can only say that everything is well. No effects from the new medication at all. PSA has dropped slightly from 23 to 20. Still early days, we will see if this continues in another 2-3 months, but it is encouraging that the upward trend seems to have been reversed.

I will update again after I have seen the oncologist next month.

Hello,

As promised, another update

I seem to do well on Abiraterone. Virtually every month they check my blood pressure and test my bloods. All remain just fine.

Present medication: Zoladex, Abiraterone, Prednisolon and calcium D3.

Side effects very few. Long term Zoladex zaps your energy and sometimes makes you feel a bit depressed and/or over emotional. (I can cry watching a Disney movie?!!)

PSA dropped a little to 18. At least it is no longer rising!

Just read a report published in the Lancet stating that the average gain in lifespan for people on zoladex and abiraterone is 54 months. I'll be ok for a little while longer.

Be happy and stay positive. It really does help!

Hello,

It has been a while. This is mainly because not a lot happened. Zoladex plus Abiraterone and prednisone seems to be doing what it is supposed to do. PSA now slightly down again at 15.

Prednisone is responsible for me gaining weight. Went from 79kg to 85kg. As I am well past the days where I wanted to impress the "girls on the beach", I do not mind too much. However I do not like it, but cannot be bothered to stop drinking beer or go on some sort of a diet.

Apparently, my kidney function is not up to scratch. Not sure why that is, but have been told to drink 2 ltrs of water every day and no.......2 ltrs of beer is no substitute. We will see if in 3 months it will be ok again.

Still the same side effects.

Occasional hot flushes, decrease in muscle volume/strength, sometimes over-emotional and slightly depressed.

Also absolute loss of libido. This sounds worse than it is, because if you are absolutely not interested in sex, not having any does not bother you. However, it is different story for my wife, who is still with me and supporting me. Good on you girl!!!!!!!

So, all in all I seem to be doing ok and long may it last.

If you have just been diagnosed with PC and happen to read my story, I hope that you will gather that not all is lost. OK, everyone is different and PC affects everyone differently. But there is hope.

Keep your pecker up!

Hello again. It has been a while but there was/is no news. (No news = good news).

Due to covid19 I had telephone consultations rather than face to face meetings with my oncologist.

I prefer face to face, but with corona I understand the phone consultations. Especially if there is nothing significant to report.

So far the PSA is stable and the rest of the bloodtests are ok too.

So the abiraterone and zoladex plus prednisone appear still to be working. So I will keep taking the medication.

I gave in and been on a diet with no alcohol for 3 weeks. Lost 5kg. Now eating normally again and also drinking a few beers again. Still just over 80kg.

Worst side effect at the moment is a total lack of energy, so started light exercising. It helps a bit.

As soon as I can have face to face meetings with my oncologist again, I like to discuss my options for when the present medication stops working.

Speak soon and stay healthy

Henk.

Had my first face to face with my oncologist since I don't know when (corona!)

Bloods fine, bonescan no new hotspots, MRI scan showed tumor in bladder growing.

I knew it was, because passing water gets more difficult. Discussed radiotherapy for tumor, but radiologist decided that cure (radiotherapy) would be worse than the ailment.

So we'll continue on zoladex, abiraterone and prednisone and see where that gets us.

Be happy.

Weirdest thing happened. All of a sudden I started urinating blood. Not a lot at first, but it got gradually worse.

Last time that happened, they had a look in my bladder and discovered the PC-tumour. Subsequently they took a bit of it off and that was that.

Urinating blood, and I mean pure blood is not a pretty sight and it did worry me a bit. However, it did not hurt and I thought (fool that I am) that it would rectify itself.

Until I also started passing blood clots. Smaller ones at first, but they too grew bigger.

Then, one night at about 3 am I could not urinate at all. (These things always seem to happen at awkward hours). The whole system was clogged up.

All this time I never told my wife because "I did not want to worry her". Dumb move!!

Anyhow, saw the GP next morning. She sent me straight to hospital.

Urologist had a good look around in my bladder and decided blood came from the tumour, however he could not see any "serious bleeding".

Was admitted (for three days as it turned out) to have bladder rinsed on a continuous basis and "turbo-washed" 3 times a day. You won't believe the "debris" that came out.

Still pass (a little bit) of blood and the occasional (very small) clot, but other than that everything is fine.

Urologist wondered (as did the oncologist) why I had not had radiation therapy in order to try and "zap" the tumour. Told him that the radiologist did not like the idea. Something to do with cure being worse than the ailment and the fact that I had been "zapped" in that area before.

Now, under pressure from oncologist as well as urologist, I got an appointment with radiology.

We'll see where that gets us.

In the mean time I have done some research about having to live without a bladder, (worst case scenario). What can I say...... awkward, but perfectly do-able. So if it all goes to a can of worms (bladder-wise), it won't be the end of the world, or me!!

Be happy, stay positive!!

It bloody well happened again. Within 3 weeks of leaving the hospital, the same thing happened again; passing a lot of blood and then I could no longer pee.

Back to the hospital, two days of rinsing the bladder, third day removing the catheter and back home in time for Christmas!!

In the mean time I have started radiation therapy (photon?) to try and zapp that bloody tumour. I had 7 sessions so far with another 6 next week and the week after. So far no adverse effects (knock on wood).

Will keep you posted.

Happy new year!!

Well, I have finished my radiation treatment. No problem what so-ever. Although I have developed a very mild form of urinary incontinence. I now have to wear "panty-liners" made for men. They range from 0 to 10. I am on 0, so it is all very manageable, but awkward to get used to all the same.

Passing blood has ceased all together I am happy to say. Thank you radiation therapy!!! It bloody well worked. Another worry less.

Talked to my oncologist today (on the phone due to covid) and she told me that PSA has dropped from 16 to 2.6!!!!!!!

Sounds like the radiotherapy worked even better than I thought. I am very happy because it will probably give me a few extra years. It worked before (2003) and than stopped working, so I take it that it will be no different this time. Still, a few years extra is better than a poke in the eye with a sharp stick.

So, as always, there is hope. Even if everything starts to look a bit gloomy.

Keep your pecker up! Sorry that bit does not work that well anymore, so, keep your head up!!

Cheers,

Henk

Whoopy dee. Zapping the (PC) tumour in my bladder has had a positive effect. Not only did it stop the bleeding in my bladder and the subsequent trouble passing urine, it also seems to have done something to my PSA. It has now reduced to 1.1. Never thought I would see figures as low as that.

Happy as I am with the results, I am a bit worried about the future though. Because they cannot remove the tumour in my bladder and although radiation was extremely succsesful this time, there is no repeat (radiation) performance likely.

So what is next?

Oncologist seems to think that I will do well for a while on the present medication. When asked what options I would have in the future (no operation to remove the tumour and almost definitely no more zapping the bugger) she mentioned Lutetium.

I looked it up and as for many of the "new" treatments, it is all a bit up in the air. It seems to me that all the new treatments and/or new sequence of treatments don't get any further than that. There still is no breakthrough or eureka moment. It all helps a little, but nothing to write home about.

Anyhow, I am happy with my situation as it is and long may it continue.

So, if in doubt, zapp the bugger. It does seem to make a difference.

Would you bl**dy believe it? PSA has gone down again, now 0.88!!!

You recognise this?

Specialist: "How are you feeling?"

Me: "I feel fine, but I am sure you have a different opinion on how I should feel".

Not in this case. All blood tests came out fine and she does not want to see me till January. And even that will be a consult by telephone. So, she is confident that not a whole lot will go wrong in the mean time. Well, if she is confident, then so will I. Definitely planning a holiday now.

It seems that I will have a little more time on this mortal coil. Just have to be careful not to be run over by a bus, that would just be sodd's law.

So there you go, never give up (hope). live a little. With the right specialist and the right medication, there is a lot that can be achieved.

Cheers,

Henk

You have not heard from me for a while. That's because not a lot happened. However, it looks like "things" are happening now.

Zapping the PC-tumour in my bladder made a huge difference to my PSA. But it appears that the effect of the zapping is wearing off.

Also the zoladex and abiraterone treatment is losing it's effect. Not entirely unexpected but still not the news I would like to hear.

PSA has now shot up to 3.3. Not a particular high score, but the rate of increase is worrying.

My latest CT-scan has shown some more lymphnodes affected; never good news.

I will go for another bonescan in 2 weeks time, to see if there is any change on that front. I will keep you posted.

It all makes for an interesting talk with my specialist in June. She has already indicated that she is (I am) running out of options. The only thing left is chemo, which for reasons of my own, I refuse.

So, we will see what the outcome is, and more importantly, the outlook.

On a positive note, my wife and I had a holiday in april and enjoyed it so much that we booked another one for this year.

Also, I still feel fine. No aches and pains apart from the ones associated with my age.

We will see what the future brings and I will inform you if there is any news.

Always stay positive, that is half the battle won.

Henk

I saw the oncologist earlier this week with regards to my bonescan.

All is quiet on the bonescan front. A few old hotspots, but no new ones!

PSA has gone up from 3.3 to 3.5 No surprise that it is only a small increase as we checked it just a month ago.

She also checked my DNA and the DNA of the tumour for certain anomalies to see if, in case there were any, I would qualify for immunotherapy trials. Apparently I am fairly "run of the mill" as nothing abnormal was found.

Because the last time she hinted that the next step would be chemo, which I refuse, I asked what was left as far as treatment and time left on this earth.

Well, she seems to think that I have a little time longer to live and that if all goes to a can of worms there is (surprise, surprise) still lutetium that can be tried.

So our next holiday was already planned and, bar airlines cancelling flights and airports overcrowded, I am going to enjoy it!!

Next update October 2022.

As promised, here is an(other) update.

I saw the oncologist today. Unfortunately the PSA has shot up from 3.5 to 10. A clear sign, (as expected after a while), that abiraterone plus zoladex is no longer as effective as we had wished for.

She also found deposits in my blood that indicated that my bones are being affected. So next stop is another bonescan.

To top it all, the CT scan showed several lymph nodes in the pelvic area that are swollen.

So it looks like I am (slowly?) on my way out, but aren't we all.

We, the oncologist and I, discussed any future possible treatments. Apparently the only (standard) treatment left at the moment is chemo. I refused, and not only did she understand, but she agreed with my decision. She will however try and get me access to the Lutetium177 trials. In some countries this has already become standard treatment, but not in the Netherlands. If I get accepted, it would mean a lot of frequent travelling, but I am willing to give it a go. Especially because, if I end up in the control group (i.e. receiving a placebo), I will be moved after 3 months to the the group that actually gets the Lutetium177. It is worth a try.

On the positive side, I still feel good, apart from the aches and pains that come with age. Although I have noticed that my energy levels are low and that I appear to be out of breath much more frequently. So be it.

Keep breathing and stay positive. It as as good as any medication!!

Who would have thought; another update 2 months after the last one. But a lot has happened.

First of all I did not get included in the Lutetium 177 trial.

Initially they said I would need additional checks and tests (healthcheck, bloodtests, a psma petscan, etc.) and then they would put me on a waitinglist. This suited me fine because I planned a 4 week holiday in January. Then all of a sudden they phoned me to say that the manufacturer had enough participants and was closing the trial enty. So, if I still wanted to participate, could I please be there the next morning at 08:30 to sign paperwork, be prepared to go there 3 times a week and cancel my January holiday? I told them no!

My oncologist asked me why I said no; would I not want to live any longer? I asked her how much longer I would get and at the cost of what? She could not answer that. I refuse to have my life turned upside down for what? That is also the reason I refused chemo.

Secondly, about two weeks ago while I was in a supermarket doing the shopping, I developped an increasing pain in my groin which made walking very painfull. I was expecting it to subside after a few days, but it did not. After two weeks I consulted my GP. She sent me for x-rays because she thought, considering my age, that it might be a worn-out hip.

Long story short: I have a tear in my pelvis near the previously discovered hotspot and bonegrowth in places that you don't want/need it. Orthopedics do not want to touch it, radiotherapy is very reluctant due to the previous radiotherapy treatments.

So, now prednisolon is replaced by Dexamethason, I will get an IV with Zoledroninezuur? for bone strengthening, and I am now prescribed oxycodin for the pain. That last stuff actually works!! I can walk without too much pain. It is still painfull, but not debilitating, it is just sore.

So you see, I am still alive, not in too much pain and still planning to go on our holiday in January.

I will let you know if anything else worth mentioning happens. Otherwise my next update will be sometime in February.

Happy Holidays!!

Dear all.

It has finally happened. After years of hardly having any problems at all, the bloody PC has gone absolutely mad in the last few months. Nobody saw it coming (least of all me), but all of a sudden it attacked my bones. Both hips and my pelvis are so invested that there is no chance of repair. I am on very strong painkillers but will not walk again. now it appears to have targetted my lungs. Every day I can get 1.5 litres of fluid removed from behind my lungs. Needless to say I am like a fish on dry land, gasping for air. I am not waiting to see what the next target is. We are desperately hoping for a place in a hospice and then paliative sedation.

Good luck to you all.

Henk

Henk's e-mail address is: henkinenschede AT ziggo.nl (replace "AT" with "@")