43 with stage 4 prostate cancer

[Kezza2]

Hang in there Cam.  You're not dead yet and there are a bunch of us that are a lot closer than you.  I get a lot of mental relief through Mindfullness Meditation.  I know it sounds a bit wanky.  I did a program through the Cancer Council, and most mornings put on my earphones and play the disk and I go to a happy place.  It helps.  The cure is both inside you, and with the interventions from outside - both together and more powerful than either on their own.  

 

[Cam]

Hi all, thought I’d share a quick update.  Whilst in San Francisco early May, my local MO managed to get me an appointment with Dr. Larry Fong at UCSF.  We discussed Provenge and possible other treatments such as Keytruda, but agreed to commence with Provenge.  So my family (wife and 3 boys) are packing our bags and heading off to SF for nearly six weeks on Thursday, with my first treatment starting the day after we land.

 

True to form, I had to get blood tests done today to send to the US and my bloody PSA has jumped from 0.067 to 0.108 in the past six weeks (T up from <0.4 to 0.7) so I’m feeling rather deflated.  At this stage still on bicalutamide 50mg daily as my only active treatment given I had the bilateral orchiectomy last year.  Won’t get a chance to discuss with local MO before flying out as he’s at ASCO with every other oncologist.

 

Will share an update once I see how these Provenge treatments are tolerated and once I get to talk to an MO about my latest PSA rise.

 

Cam

[Cam]

What next? Keytruda, enzalutamide, invent a time machine??

Hi all, well, I’ve just added Provenge to my now extensive list of treatments since Gleason 4+5=9 grade 5 diagnosis in 2017. I keep being reminded by the medical professionals that I have aggressive advanced PCa (mCRPC now) and it’s terminal... but I’m equally as aggressive as my cancer so I’m determined to put up a good fight.

Flying back to Australia on Wednesday after 6 weeks in the US getting Provenge, having a blood test (PSA went from 0.067 to 0.108 prior to leaving so seems bicalutamide is failing), then looking for the next treatment. US MO has suggested we have a crack at Keytruda even though no MSI-H/dMMR. Any thoughts? Yet to discuss with Oz MO and PSA result will likely guide his recommendation which will probably be enzalutamide, but I’m not keen on following a standard of care that doesn’t seem to deliver the long results I’m looking for so that I can stick around long enough for a cure to appear. My 5, 7, & 11 year old boys are my incentive to keep “swinging for the fence”... so my new US friends describe it.

Cam

[alanbarlee]

Hi Cam,

While you do have high risk PCa (early onset and GS 4+5), your PSA is still very low, indicating a very limited growth rate of your cancer cells as of now, so you're still very likely to respond to the sequences and combinations of the large number of treatments that are now hitting the market. Bear in mind that all of us with Stage 4 PCa are dealing with a 'potentially terminal' disease (if we don't die of something else) - which simply means 'not yet curable'. In the meantime, buying time is always a good option.

A few thoughts:

1. If you haven't had conventional ADT (i.e. a GNRH agonist or antagonist), you may want to pursue this, since these hormone treatments will drop T lower than an orchiectomy does (target T< 0.7 mmol/L).

2. The anti-androgen bicalutamide (Cosudex) is a much less effective T blocker than enzalutamide, so I wouldn't be too hung up about that proposed switch. Enza (along with other emerging anti-androgens where trial results are emerging) is a widely effective drug.

3. Alternatively, abiraterone (Zytiga), which inhibits testosterone synthesis is an excellent option, which for 5 years and counting has worked brilliantly on my Stage 4 (lymph node) disease. 

4. It's now standard of care to bring in chemotherapy (docetaxel) at the time ADT starts, rather than leaving it until later. (Cabaxitaxel can    always be wheeled in at a later stage, if needed).

5. Subject to having a positive test for defective BRCA1/2 genes, you may be eligible for a PARP inhibitor like olaparib. There are a number of similar agents on clinical trial, so a test might be worth asking about (although some patients respond even without these gene defects).

6. Another possibility you mentioned is pembrolizumab (Keytruda)  (although the immunotherapy track record with PCa isn't yet strong: a gene test can be predictive of likely benefit or otherwise).  

7. Radiopharmaceuticals (especially radium-223 (Xofigo) and lutetium-177/PSMA-167 can deliver the goods for the right patient, but none of these are (sadly) are on the PBS for PCa, and, while TGA approved either for PCa or for other diseases, , are all (along with Keytruda) very expensive. 

8. There may be some scope for stereotactic RT (SABR), as long as there aren't more than 5 discernible mets. If any get to the point in the distant future of causing pain, SABR or IMRT can be wheeled in to deal with them.

 

You may already have your head around a lot of this, but apart from encouraging you to not let cancer define you, and to live every day for your wife and kids (they are your 'time machine'!), it's about all I can think of.

Best wishes,

Alan

  

   

[alanbarlee]

....one more thing!

9. Don't underestimate the prophylactic power of daily exercise that regularly lifts your aerobic rate (heart / lung) to 75-80 percent of your personal maximum - as well as resistance (weight or elastics) training that helps to preserve muscle mass and bone density (the latter of which should be monitored annually with a DEXA scan, and supported if necessary with denosumab or Zometa). A gym membership is a really good investment! 

Alan    

[PeterH]

Hi Cam,

 

Re the exercise, the ABC's Catalyst had a program back in 2016 dealing with exercise for cancer patients. It's worth looking at.

http://www.abc.net.au/catalyst/stories/4459555.htm

Possibly even more to the point is the following paper by the Dr Newton, who is interviewed on the program. Fortunately, it's available free at:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5961562/

Newton is currently engaged in a further big trial built on the above.

 

 

Best wishes

 

Peter

 

[Cam]

Hi All, thought it time for an update before my 46th birthday on Friday.... after returning from the US following the Provenge treatment, my PSA continued to climb to 0.071 in October so we stopped bicalutamide.  Less than a month later it had leapt to 0.34 so we discussed whether to join the queue for the Talapro-2 trial (earliest start date Feb ‘20) but decided to immediately commence Enzalutamide.  Feel like the treatment options are getting smaller and so too the chance of seeing my boys grow up, so it’s been a very rough week.  My wife and I have been discussing what things to leave behind (videos, letters etc.) for various milestones for the boys, and that is a thoroughly saddening task.  Haven’t given up hope, but this bloody cancer just won’t stay in check even after throwing the kitchen sink at it for nearly 3 years.

Cam

[Canook]

Hi Cam,

Thanks for your update...you sound really frustrated.  

I hope we can agree that the most important thing any of us can leave behind to our kids is an education. 

Teach those boys what a fighter their dad is.  They don't want videos or letters or possessions.

Show them that you are not prepared to go quietly and that, if the kitchen sink ain't working, you are prepared to rip the bathtub out and throw that as well. 

Exercise, meditation, diet and a positive attitude should be maintained irrespective of your doctor's other prescriptions. 

They all help, as does spending time with your family on matters other than cancer and estate planning! 

I had a shitty day today also.  Today's PSA sample result has doubled over the past six months. 

I now know that second-round treatment of my advanced PCa must now start sooner rather than later. 

Let's take a breath together and promise one another that tomorrow we will regroup and try the next thing. 

We just need to stay alive until a cure is found...until then be happy not sad!!! 

Best Rgds,

David

 

[Chalkie]

I have been on the treatment treadmill for the last 10 years. They tell me options are running out but new ones come along - in fact the last three were not available a few years ago.   After the Chem Doxetaxel  started to loose its effectiveness I was eligible for Zytiga or Xtandi and I went for Xtandi - That lasted for about 6 months and PSA was on the rise again.  So then I was offered a trial   TheraP  - (Lutetium or Chemo Cabazitaxel).  No choice and I drew the Lute straw.   (Lu-PSMA617 theranosic) works for about 50% of guys - but after 4 infusions my PSA continued to rise.  By this stage it was over 700.  So I was offered the other arm of the trial Cabazitaxel.  This is available on the PBS.  After 4 infusions  (12 weeks) my PSA continued to rise and was over 2500!!!  Scary, but they said keep going and my psa started to drop and after 6 more infusions it is now below 1200.  A drop of 50% in 6 months is impressive.   One of my oncologists says this chemo has had some spectacular results.  I hope I can join that statistic.

For me this chemo has been less debilitating than the Dox when I lost my hair, taste and my fingernail became poisoned one by one.  My hair is still there, my taste buds are involved but minimal.  Fatigue is a side effect that runs me out of puff.  Stairs are hard work and I now use a ride on cart on the Golf course.   I am having the 11th infusion tomorrow.   I have heard of some guys being on this treatment for over a year.  Next option is Ketruda - the drug that has proved very effective in the treatment of Melenoma and Lung Cancer.   The effectiveness for Prostate Cancer is not as flash but can work for some so they tell me.   I have heard on the grape vine it is now available on the PBS - only a rumour.   Then there are a number of genomic treatments - Not sure if I qualify and of course new trials are becoming available.  Hang in there.

Good Luck

Chalkie

 

[alanbarlee]

Chalkie - great result on the cabazitaxel! May the good PSA trend keep going. The better side effects profile of cabazitaxel is good to see confirmed for those graduating from docetaxel - thanks for sharing your experience. 

 

A couple of thoughts here to perhaps chat about with with your oncologist, viz gene-targeted therapies.

 

The immunotherapy drug Keytruda (Pembrolizumab) is a 'PD-1 inhibitor' that seems to be most effective where  'micro satellite instability' (a  genetic mutation in the tumour) has occurred. 'Mismatch repair' gene mutations is another situation where Keytruda seems to be effective. In the absence of both these indicators, this option may not be worth the quite high cost .(There MAY be PBS coverage for this, but only under very specific circumstances).  

 

'PARP inhibitors' like Lynparza (Olaparib) is a class of drug often used in ovarian cancer. In prostate cancer, the evidence suggests that they work best in the context of mutations to 'homologous recombination repair' genes - typically BRCA2 (and others), made famous by Angelina Jolie.

 

Tests for some of these (especially BRACA gene mutations) are becoming available in Oz, and this is likely to expand quickly. Outside of a trial, these tests are a bit expensive, but this needs to be assessed in the context of whether much more expensive drugs have a good chance of working - or not.    

 

There  are clinical trials running on both these classes of drug, including combinations of them. Positive gene testing is a usual eligibility requirement, but these are provided free within the trial   Amplified side effects with some combinations  be a problem for some patients, but this is hard to predict for an individual.

 

Best wishes,

 

Alan

[alanbarlee]

...and another bit I forgot to mention in my previous post -

 

PARP inhibitors like Olaparib have been  also been successfully combined with carboplatin  - but the caveat on side effects needs to be considered.

 

Alan

[Cam]

14 hours ago, Canook said:

Hi Cam,

Thanks for your update...you sound really frustrated.  

I hope we can agree that the most important thing any of us can leave behind to our kids is an education. 

Teach those boys what a fighter their dad is.  They don't want videos or letters or possessions.

Show them that you are not prepared to go quietly and that, if the kitchen sink ain't working, you are prepared to rip the bathtub out and throw that as well. 

Exercise, meditation, diet and a positive attitude should be maintained irrespective of your doctor's other prescriptions. 

They all help, as does spending time with your family on matters other than cancer and estate planning! 

I had a shitty day today also.  Today's PSA sample result has doubled over the past six months. 

I now know that second-round treatment of my advanced PCa must now start sooner rather than later. 

Let's take a breath together and promise one another that tomorrow we will regroup and try the next thing. 

We just need to stay alive until a cure is found...until then be happy not sad!!! 

Best Rgds,

David

 

Hi David,

Your reply was the first thing I read today and gave me the required slap and words of encouragement to start getting back into the swing of things.... thank you.... so I flew a helicopter down to Moorabbin airport and did some circuit training.

My wife’s new favourite saying is, “here today, here tomorrow”.... works for me.  As you said, just need one of those “tomorrows” to be the day they come up with something more curative.

Happy.

Cam

[Canook]

Glad that you are back in the air with a fresh perspective Cam...remember to always keep your eyes on the horizon (to avoid helicopter-induced motion sickness) !!

 

Canook

 

PS Love your wife's saying and wish that it applied to my scalp (hair today, hair tomorrow, any hair will do really)!!!