16 years with metastatic prostate cancer - latest news

[HighCadence]

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 

I hope it helps. 

David.

[Admin]

David

I know you will be extremely careful with that spine until it's reinforced.

 

I guess the doctor will taper down the steroids over a period of time. The tapering time I took one time (1 month taper after 14 months high dose steroid) was too short and I suffered adrenal failure. Treatment for that was steroids again, then a 5 month tapering.

 

If your kidneys have slowed down, your doctor may suggest to be careful with regular water. I use the light colour of my pee as a guide. Your doctor will advise if too much water will be a concern. There are a  number of things kidneys do not like (from too much protein to licorice), but you should wait for your doctor to tell you accurately about your kidney function level before you act on these. (My kidney score is CKD3, so it is a constant thing in my life).

 

Great graphing, by the way. Clearest we have had in our group.

Jim

[susan horn]

What part of spine has the mets

my husband had cervicle spine surgery 

now lower back hurts 

he also has two hemi hips and rods in femors to prevent breaking 

if in cervicle spine don’t wait 

[pauldhodson]

Hi David, Thanks for the update. Sorry you are going through a scary phase. I am too (my cancer has morphed into the small-cell variety). I hope your spinal surgery goes well.

[HighCadence]

Hi admin,

i will indeed - although the temptation is always to go for an “ah, f*8k it” ride down a steep hill with the wind rushing into my face!

The endocrinologist has been slowLy weening me off - I had a similar problem when I was taken off too quickly when Abiraterone ended. I guess the issue now is whether or not I have to go back on during the operation etc, as he said I should restart if I was ill.  I’ll check that. 

I think the endocrinologist said he might give me something that makes me pee more frequently, and if that doesn’t work, out me back on blood pressure tablets - i’ll check and get back to you on that too.

Charts are my thing - I’m a professional ecnomist. Just glad to have worked out a way to post them.

Thanks again,

D

[HighCadence]

Hi Susan,

the real problems are at T7, with possible issues at T6 and T5.

i hope your husband’s pain issues get resolve soon.  Sounds like he’s been through a lot already.  He must be very strong.

David.

[HighCadence]

Thanks Paul,

I’m sorry to hear that. I hope you can get some treatment that will help you.

Hang in there.

D

[alanbarlee]

G'day again David,

That's a great update post that you put together - a coherent story of a difficult journey, garnished with a generous serving of positivity, optimism and courage, as was your first post. Early onset PCa (age 37) is clearly a tough animal to subdue, but your story is both informed and inspiring.

 

Good that you found 123-radium (Xofigo) to be relatively easy to tolerate, even though its efficacy in your case was less than you were hoping for. Your comments will reassure others with bone-only mets, who should hopefully have subsidised access to this drug here in Oz early next year, after 4 years of unremitting advocacy from this Group.

 

Your comment about 'pushing through the lethargy' caused by most PCa treatments is excellent advice. There have been ground-breaking research reports published by Rob Newton  and Prue Cormie here in Oz that provide strong evidence of the importance of exercise to both the body and the mind.

I mentioned in a previous post that there are a number of trials going on with promising new PARP inhibitors that are following on from olaparib (given your positive BRCA2 gene test). Did you manage to dig out anything useful there?

 

In a similar vein, have you been able to follow up on your radonc's positive more assessment of your initial Cyberknife stereotactic radiation treatment? This 'spot welding' may limit adding to the unwanted side effect load caused the battery of drugs you've been tolerating. However, you may want to discuss the cumulative radiation exposure that Cyberknife and your previous IMRT have already imposed on the skeletal areas in question before going down the track of more RT. This may or may not also limit the feasibility of a 225-actinium-PSMA  trial, which otherwise could be another good candidate in terms of efficacy and manageable side effects. 

 

Unlike the experience with melanoma, bladder cancer and non small cell lung cancer, immunotherapy for PCa has been a bit disappointing, with only 10-15% of patients showing a positive response to pembrolizumab (Keytruda). My impression is that single agent immunotherapy seems to work best with PCa that is at an earlier stage. Combination trials may be more positive, however, and such trials would be well worth considering.    

On your question of issues around spinal surgery, I had a 'simple' laminectomy last February, following severe, disabling lower back and sciatic pain due to sponylolysthesis (vertabral slipping) at L3 and L4, clearly visible with MRI. The neurosurgeon removed a piece of bone to deal with major narrowing of a lateral nerve channel , which produced instant and continuing relief. My recuperation was greatly helped by walking (initially with a stick), within a couple of days of the surgery, increasing to a hour per day every day for the next 6 months, followed by a return to a 3 days per week x 1 hour per day in the gym (also good for recovering a bit of lost muscle mass and minimising bone density loss from T-reducing drugs and steroids (low dose in my case - 0.5 mg/day of dexamethasone supporting Zytiga). My warning with opioids like Fentanyl and Oxicontin is the high risk of severe constipation unless accompanied by Coloxyl and Movicol. I had no warning about this, and suffered the consequences until my pharmacist put me wise.

 

Your experience with peripheral neuropathy being a major side effect of chemotherapy (especially platin therapy, but also taxanes) is a difficult one. My thought is to try regularly stimulating the damaged nerves in your feet with alternate footbaths using hot water and ice water. I have no evidence that justifies the effectiveness or otherwise of this, but since it is unlikely to cause harm, it might be worth giving it a go. If some of the symptoms are the result of high dose or long term steroid-induced narrowing of the small blood vessels in the feet, this experiment might also help with that. (I have this latter problem, which an ultrasound test showed was not caused by restrictions in the large blood vessels in the legs).

 

That's about all I've got, Mate - other than to wish the best possible outcome for you as you continue to resist both the disease and the treatments side effects. You are an inspiration!

Cheers,

Alan

[HighCadence]

Thanks a lot Alan. Lots of helpful information and suggestions in your response.

To answer some specific questions. I haven’t followed up on other PARP inhibitors yet. The plan I’d sketched out in my mind was radium 223, PSMA targeting, then immunotherapy/checkpoint inhibitors etc.  But that’s been overtaken by events. 

On the cyberknife front, my surgeon is in communication with the radiologist who did that to try to work out what might be happening at T5 and T6. There is evidence of radiation treatment at both of those points, but it’s not clear whether or not the cancer is active there. If you’ve ever seeen these scans, grey and black areas usually means cancer, bright white is usually radiotherapy.  T5 is mostly bright white, T6 is grey, T7 has a lovely big black area, but that ‘s been there for sometime and could also be a sclerotic legion i.e. where the body has put a defensive layer of bone/calcium around a problematic region to try to make things better. I’ll know more after the PET scan.

I know what you mean about opioids and constipation!! Fully prepared this time round. Not looking forward to having to ween myself off the drugs again though. The surgeon thinks I’ll need them for around 6 weeks. 

I’m really glad that you got through your operation and will give your ideas on peripheral neuropathy a go ahead of the op.

We are all warriors together. 

David.