When I put up my last post, I expected the follow-up to be fairly straightforward - you know, radium 223 has worked a bit, but only a bit, and I’m moving onto something else/PSMA targeting/immunotherapy. But, that hasn’t really happened. The prostate cancer had other ideas.
I’ll come to that, but first I want to say a little bit about the radium treatment. For me, it was fairly uncomplicated. The main side effect was lethargy - especially for the first few days after the infusion - with the feeling that you’d literally just walked into a brick wall. First time round, I decided to rest up for a few days, but, I soon found out that if you push through the lethargy - by going to the gym or similar - you actually feel much much better. So, I’ve just carried on exercising as often as possible ever since (I had my second infusion last Wednesday). Apart from that, I’ve had a bit of a temperature, a bit of bone pain, and a bit of brain fuzz at the start of the cycle, although the latter could just as easily be stress related as treatment related. So, that’s the radium. Relatively easy overall.
Whilst all that was going on I decided that I needed to try again to sort out some long stranding problems that I’ve let slide for too long. There was mixed news on this front. A surgeon told me that there was nothing that could be done about the loss of nerves/muscle control in my abdomen, and that I basically just had to suck it up (my words, not his). I have to admit, I had a little cry after that one.
More positive new came from an endocrinologist who worked out I wasn’t diabetic or pre diabetic, which is good, although I would like to have a reason to try some metformin. He also decided that I could produce enough cortisol on my own to be able try coming off steroids (I’d previously been diagnosed with adrenal insufficiency after years on Abiraterone with a steroid). Finally, he thinks that my continued low levels of potassium and magnesium years after ending Abi is probably a reflection of damage to the kidneys caused by Carboplatin, which I’ve had twice. I have vague memories of being warned about this before the second round of this treatment, but had completely forgotten about it.
We’re not quite there yet in terms of a definitive answer, but if the latest blood test I’ve had shows I’m still low on these minerals/things haven’t changed having stopped the steroids, I will either take something to help me retain them or take something to offset their impact i.e a narrowing of blood vessels. I’m hoping this will help with the shortness of breath issues I’ve had for a while.
Put all of this together, and I was feeling pretty confident about getting out on the bike again. So much so, that I put new rim tape, tubes, and tyres on my two best bikes, batteries in the power meter and charged up the bike computer. I even bought a new jersey (two sizes bigger than the last one I bought).
And then the cancer had its say. To cut a long story short, my latest MRI scan suggested some new tumour growth was pressing on my spinal canal, making it thinner/narrower. The radiologists suggested I see a spinal surgeon with a view to sorting out what should happen next. So, I had a more detailed MRI of the spine yesterday, then this morning discussed the “pictures” with the surgeon who removed a bit of my spine last year. The upshot is that the new tumour/growth will have to be removed and some screws put into the spine. I’ve got a PET scan on Monday to determine if a couple of vertebra around the new tumour growth are “active” (it looks like it will be a PSMA scan but they are not sure yet). If they are active, the surgeon will take those out too.
Obviously this was not what I’d expected or hoped for, and I’m dreading the after-effects of another operation. But, there is no plan B. This has to be sorted out before I get spinal cord compression. I know a cyclist who has had a similar operation, but, if anyone here has gone through it, I’d really like to know what to watch out for, things I should do before and after to help recovery etc.
Apart from that, a number of people have asked to see a chart of my PSA through different treatment regimes. I’ve attached one below which cuts off the initial period of treatment - which saw my PSA dropping from around 400 to zero as the Zolodex and 2003 chemo kicks in - in order to make the variability in PSA since then easier to see
One of the most amazing stories I have ever read about fighting PCa. Thank you for sharing. And congratulations on your successful and ongoing journey! You are an inspiration!
We are all praying for you as you continue the fight! Please keep us posted.
I am just in the middle of receiving radiation to my spinal cord to hopefully eliminate a couple of tumors that have been causing me some pain. So I appreciate very much your comments on what you have done to deal with your cancer. Keep us posted on your progress. Hopefully you can get back on your bike along with other things you like to do.
Thank you very much Dennis. I hope that we both can. Good luck to you too. D
Thank you very much Nalakrats. We are all warriors on our individual journeys. You’ll be pleased to know I recently added bitter melon to my supplement list!
Wow - a long struggle. I am really impressed and inspired by your positive attitude.
Best of luck to you and hope you can get back on the bike. I am a biker as well - my ride this afternoon will push me past the 2700 mile mark for 2018. I was diagnosed 6 years ago with a Gleason 9 that had metastasized to my bladder and pelvic lymph nodes. I had external beam radiation and was on ADT (Lupron and Casodex) for 26 months. So far things have gone much better than I expected - I have been off all meds for just over 4 years and my PSA is staying down - it was 0.2 for over two years and about 10 days ago I had my every-3-month test and was pleasantly surprised to see it had actually dropped to 0.1. Thanks for sharing; you are a great role model for the rest of us! Very best wishes to you in your continued fight.
David, I am so sorry to hear your news, especially because, even when you have the operation, that means temporary relief but won't solve the problem as the tumors will still continue to grow, if not there than somewhere else. It is amazing how long you have been on this journey - one year longer than my husband - and I wish you continued success with your treatments ad, of course, first of all the operation! Keep us posted.
It was interesting what you said about Carbo Plating possibly having damaged your kidneys. I think this is what happened my husband back in May when his Creatinin changed from 6 to 23 all of a sudden and it was kidney failure. Well, his whole body was shutting down at that point, but it was interesting that, beside the liver which was his main problem, the kidneys which had always been well and strong failed.
Thank you Mel, I guess that’s the risk, but I’m going to hope for better than that, with an associated hope that there will be an immunotherapy trial for BRAC2 people like me that works. If not, then that PSMA targeting will keep the tumours at bay. I’m very sorry to hear about your husband.
to HighCadence: hut - 2 - 3 - 4 ride your bike, until your butt's sore. You're an inspiration to all of us. I thank you for your post and keep up the good fight...
Keep getting after it man, you’re an inspiration! I’m coming up on 5 years after being dx with stage 4 G9. Glad to see someone still in the fight as long as you have been.
I turn 60 next week, that was a goal of mine, next goal is to make it to 65. Let’s all keep kicking that can down the road!
Hello! I see that in a period that you had a progressive increase in PSA. At what point did the doctor make the decision to change treatment? My doctor says that although there is a slight increase in PSA, until there is evidence of progression, we will remain on Abiraterone.
Hi, it was usually a joint decision based on how I felt - so, when it gets to 10 or 20 we’ll do x, sort of thing. The switch to dex was a bit random. We were about to do something else when he remembered it was an option (luckily for me). It almost didn’t happen.
Hello HighCadence, the graph is very well done and shows clearly the efficacy of switching corticosteroids (e.g., prednisone to dexamethasone), which was recently reported. Your doctors neither knew this intuitively or your were part of a clinical trial? You may want to consider combination drug therapy such as metformin + atorvastatin + doxycycline + medendazole which is presently being investigated in a clinical trial for glioblastoma (clinicaltrials.gov/ct2/show.... This article contains additional information on the clinic that developed the cocktail (dailymail.co.uk/health/arti...
Cheers,
Phil
Hi Phil. My oncologist had recently co-authored a paper which showed 20-25% of men benefited from the switch (which made it even more strange that he almost forgot this was an option). I’ll check out the link - thanks very much for that. David.
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