Hi everyone,
I'm fairly new to this site, but a long time PCa sufferer.
This is my story:
Diagnosis
Date: November 2002
Age at diagnosis: 37
Age now: 53
Treatment
1.Chemotherapy - Paclitaxel, Carboplatin, Estramustine - for 6 months
2.Intensity Modulated Radiotherapy - 81gy over three months
3.Zolodex - with a break in 2009
4.Zometa - lots at first, now every year or so
5.Cassodex - added to Zolodex for a short time - didn't help
6.Abiraterone - worked for almost 4 years (switching from prednisalone to dexamethasone extended its efficacy)
7.Enzalutamide - for four months. Had all the major side effects except fits, and it didn’t do much for the psa so stopped
8.BRCA2 mutation confirmed.
9.Trial for AZD6738 and Olaparib (a PARP inhibitor that was supposed to work well with BRCA2) - helped my mets a bit, but not the PSA.
10.Chemotherapy - Carboplatin and Docetaxel regime. Had to stop after 8 cycles as I was feeling a bit grim/needed regular blood transfusions.
11.Three ribs, a bit of spine and some lung removed to clear tumor/met in May 2017.
12.Brother diagnosed and had his prostate removed - his genetic tests are ongoing.
13.Cyber knife for met at T6 in June 2018 - oncologist says it didn’t work, radiotherapist not so sure.
I think that's it. There might be more. My memory is shot to pieces as a result of the hormone treatment over 16 years.
Latest News
I’m still struggling with the effects of my surgery, more than a year after the operation. In simple terms, the operation has resulted in an abdominal bulge linked to the removal of nerves when the ribs etc. were removed.
The absence of nerves means some of the muscles in my stomach aren't working - so the bits and pieces behind that area are not being held in place. The hope was the nerves would grow back/other nerves would compensate, but that hasn’t happened. So, there’s a lot of discomfort, plus my breathing has been adversely affected. Adjustments to my sleep apnea machine have recently been made to help with the latter, I’m going to see a surgeon about the former. I’m not keen on another procedure, but it may be a case of having to. One thought I’ve had is to possibly speak to surgeons who work on battlefield injuries and recovery from those.
Given these side effects, to say nothing of the post operation pain and having to wean myself off fentanyl etc. I sometimes wonder if it was worth having the operation. After a few minutes of self-pity, the answer is always “Of course it was”, I’m sitting here almost 18 months later with a psa of only 4, and without a large tumor that was enveloping my ribs, spine and lung. It wasn’t easy, but I would do it again, if needed.
On the treatment front, the oncologist has suggested a course of Cabazitaxel or a trial. I was very lucky to be offered places on a couple of immunotherapy trials. However, I’ve decided to try radium 223 first. Olaparib makes your cancer less sensitive to gamma radiation, but this is alpha radiation, so we’ll see.
I know that this is only a “holding operation” so that, at some point, I will have to go on one of the trials suggested. But, radium 223 seems to have less of an impact on quality of life, and my psa is quite low/mets are relatively small at the moment - so it’s probably a good time to give it a go. After that, the Ac-225-PSMA-617 PSMA targeting looks quite attractive. I’m following reports on that from numerous places around the world. Hopefully I can get onto a trial after the radium 223 treatment has run its course. If not, then immunotherapy/checkpoint inhibitor stuff will be the order of the day. I’m not going to have another round of chemo, as the impact on quality of life is not worth the likely gains. That’s not giving up - more an active choice of quality over quantity. And I’ll do all the trial stuff before I get to that point. By the way, if anyone has advice on radium 223, please let me know.
Other stuff
When I was first diagnosed 16 years ago, I saw an oncologist at Memorial Sloan Kettering who devised the aggressive chemo I had in 2003 (number one in the list above). That saved my life/kept me alive until Abiraterone came along (which, in turn, helped me to be here now).
He also advised me to take up cycling - telling me that he wasn’t sure why this had a positive impact on survival, but it did. I took his advice to the extreme, ultimately riding up a number of the famous mountain passes of the Tour de France, and dieting hard so that I could keep up with friends at a local cycling club I’d joined. My kids told me I looked anorexic, but I had to lose weight to stay with my friends, because the lack of testosterone in my body meant I was constantly anemic and it was hard to build/maintain muscle.
I’m convinced this has helped me stay alive for so long - which is why I’m worried about the fact that I haven’t been able to ride my bike for the last three years, due to the side effects of treatment, operations etc. I’ve also put on a stone and a half in weight over that period. I understand that there are some ongoing studies into the impact of exercise on pca. My experience is that my body just felt like it was functioning better/properly when I was fit and thin. So, the aim is to get going on the bike and weight front ASAP. I rode my bike for the first time in three years in August 2018, I’m hoping I can build on that despite having to have more treatment.
One last thing, I know there are competing views on the impact of supplements, so what follows might not be music to some peoples ears. At one point or another, I’ve tried everything. At the moment, I’m focusing on a combination of Ursolic Acid, Reservatrol and Curcumin. I’m convinced this has helped keep my psa low/unchanged since the time the oncologist told me the cyberknife treatment hadn’t worked - I know, I know, it’s the scans that are more important, but there you go, I believe these supplements help.
Actually, there’s another thing. I’m having trouble breathing when going upstairs. I’ve had lots of tests for this, and everything is supposed to be okay - it’s just a matter of getting fit again after a few years of tough treatment. I’m assuming that’s right, but playing close attention to it as we all know about the impact of long-term hormone treatment on heart health.
Finally, finally, finally, I’m convinced the treatment I’ve had has had an adverse impact on mental acuity. I had tests for this a few years back which were inconclusive - the first test showed I had “clunky thinking” the second, a few years later, that I’d improved. I think I was better in the second test because I knew what was coming and planned for that. The consultant said that could have been the case, but she could only report the test results. Since then, things have deteriorated.
When I was taking Enzalutimide, things were so bad I thought I might have dementia/Alzheimer’s. Some of it is obviously age, but my wife can say something to me one day and I have no recollection of it the next. Literally nothing. Not even the suggestion of a memory. This makes things quite difficult - especially at work, where my boss regularly asks me to update a piece of work that I have no memory of ever having done. I’m not sure there is an answer to this, just thought I’d share it in case it rings true with anyone else, and they have suggestions on ways to get round it/improve things.
In a similar vein, I have peripheral neuropathy problems in my feet post the last round of chemo; persistently low potassium and magnesium levels post Abiraterone – despite regular supplementation; and high blood pressure post Abiraterone – I did take medication for this, and am probably going to have to re-start that.
Right, that really is it, if anyone has any advice or comments on any of this please let me know.
Best Regards,
HighCadence
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