I previously wrote that ADT failed after 6 months and that I was looking at next steps. In summary
- RP in 2015, IMRT in 2016 both failed to stop disease progression
- PSA was 7.5 in Apr 2017 when I started ADT, by Nov 2017, PSA had reached 15.9.
Gregg57 suggested that the issue might be neuroendicrine PCa and and advised me to look out for visceral met.s.
So what has happened since then? Uro added Cosodex to my Zolodex and has conducted a series of tests:
- bone scan shows no bony metastisis
- CT scan showed 'suspicious lesions' in liver
- PSMA scan showed that lesions in liver are indeed PCa mets. Not the best Christmas present ever!
- PSA as at 19 Dec is 41.
In summary - ADT2 has done nothing to stop disease progression. MO has stopped Cosodex and ruled out Enza or Abiraterone as there is no 'androgen axis'. He also noted that this is not behaving like 'normal PCa'. So I need to start chemo right away (first dose scheduled 29 Dec). It has been encouraging to read the reports of many men here who have gone through chemo, and I am quite confident about managing side effects. Luckily at age 55 I am still fit and active, I don't run marathons like Randy Kam who is a member here but i am pretty fit for my age.
Gregg57 - you know your stuff, and unfortunately it looks like you called it correctly.
Thanks to everyone on this forum, the conversations and comradeship here make it easier to manage this disease. A Merry Christmas to each and every one of you!
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Hazard
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Sorry to hear about your liver mets. I think you are making a good choice going on chemo. So many of us have made it through chemo so there's lots of support available here. I wish you all the best for your treatament and dealing with side effects. What specific chemo will you be doing?
Hi Greg, are you up early, or up late? What time is it where you call home?
I will be doing docetaxal. 6 cycles minimum. After that, MO said that we will take it 'one at a time'. Randy Kam did 15 rounds, that's a good target :-). But he also said that Lutetium trial is now recruiting more men, if we don't see progress after 4 cycles then we will consider this as an option.
I will do a 2 day fast before each round. MO said that there is no evidence that fasting helps, but said that I can do it if I want. I see Chemo nurses day prior to first infusion and I am sure that they will have a few tips on how to handle side effects.
I live on the west coast of the U.S. I'm usually up until around 10 and up around 7 or 8.
If you suspect cancer with neuroendocrine features, you can also get a Chromogranin A blood test to establish a baseline. Those particular cells don't express the PSA, but they produce CgA in larger than normal amounts so that may be a useful "tumor marker" for you going forward to see how well your treatments are doing against the cancer. Also, keep a sharp eye on your liver enzymes (AST, ALT, Billirubin, etc.) Those can be useful indications of progression or regression with liver mets.
If you do have those cells, generally the chemotherapy that's most effective is Carboplatin either alone or in combination with Docetaxel or Cabazitaxel. Of course you should discuss all of this with your doctor since I am not a doctor.
Good luck and feel free to message me privately if you prefer. We are all here for you.
Hey Hazard - thanks for the mention. I just wanted others to maybe try what I did with exercise/fasting and hopefully reduce the side effects. I still worked 6 days/week during the sessions.
My MedOnc and I feel that my aerobic fitness staved off any peripheral neuropathy and offset fatigue
Don't remember if you are on Metformin at all, I was at 0.7 when MedOnc wrote an Rx(after I emailed research) and I got down to 0.2 - 6 months later.
After the above regimen, I was able to get a 2nd nadir of 0.1 a year after the 0.2. I had ticked up to 0.5 before I started the Ursolic acid combo prior to that.
I went whole grain, lotta fruits/veggies. No red meat, fish twice/week, no eggs/poultry
All the best to you with the sessions and Mele Kalikimaka to you and yours
Randy, thanks for this info, my uroligist mentioned metformin (and statins) as emerging treatment for PCa but didn't prescribe it. But I can see that it helped you.
I have shared your amazing journey with my wife, and she has asked me to find out more about your supplement regime.
Where is best place to buy ursolic acid, resveratrol and curcumin? What are the best brands and how much do you take? I live in Australia, so i am hoping that I can order on internet (I use iHerb regularly, they have a great service in my experience).
Thanks Randy, happy new year and I hope that you run many more marathons in 2018 (and beyond).
Sorry about the liver news, but chemo will be an excellent route. Helped me tremendously. and at your age and with your physical condition, I’d bet you will breeze thru it!
I know I’ve read here of folks that fast before the chemo...personally I’d just eat well. I think you will handle the treatment better. Have you read David Servan-Schreiber’s book Anti-Cancer: A New Way of Life? Great read about his personal journey and excellent diet book that recommends the right diet targeted for each type of cancer.
I wish you Merry Christmas and much success with your treatment! I’m sure 2018 will be a great year!
James
Another thing you might want to consider is testing for genetic mutations to your PCa. There are targeted treatments available for certain mutations such as BRCA 2, TP53 and others.
There are several options for genetic testing, others here are more familiar with them than I am.
Thanks Greg, by good fortune my MO at Peter MacCallum hospital in Melbourne (Australia) is involved in all the cancer trials and has already enrolled me in the trial that involves genetic testing. I have already provided a blood sample and they are also getting a sample of my tumour tissue from my prostate which is sitting in a bottle somewhere. So I will continue with chemo until we get the results of the genetic tests. If tests are negative then we just continue as we are, if they are positive then we can discuss what next at that time.
If you wouldn't mind, please let us know the details of the test results, treatament options, etc. This is an area I am trying to learn more about. Thanks.
Hazard, you may also discuss with your Onco what chemo drug is more effective in dealing with mets in the liver. Docetaxel or Carboplatin? Just a thought.
Thanks Sisira, a few others have mentioned here that Carboplatin might be more appropriate and I will bring this up with MO when I see him in a few weeks. The other option is Lu177 - Peter MacCallum is extending trials for Lu177 and MO says that if we don't see a positive response to docetaxal after 4 cycles then he will consider putting me onto Lu177 trial. This may be better than either docetaxal or carboplatin (or maybe not )
Thanks to everyone for their kind replies. Just a quick update on how first chemo went
- Water fasting on Wednesday, Thursday and Friday morning prior to first infusion Friday afternoon. No noticeable effects from fasting - no hunger, no light-headeness.
- A light dinner (garden salad) on Fri night, then 20 min on exercise bike and 30 min of my daily weights program
- 6.5 km walk on Sat morning, and 2.5 hours of tennis on Sat night
- 1 hour lawn morning Sun morning (today)
I know its only the first one, but as I told my wife - don't tell me that the first one is easy. I expect that each treatment will be the same, my goal is to keep doing what i do and to expect nothing to bad. Maybe I will even take up marathon running.
I'm glad that you got thru the 2 day fast with no issues. Keep up the exercise to help offset fatigue and neuropathy.
There's a cumulative effect to the chemo and you may have symptoms as you progress. No worries - it will diminish after the last session. Don't worry about hair loss - that's your badge of courage
Sounds great for the first infusion! That's similar to my first. Yes, you may hit some rough spots on infusions, particularly near the end. But for me those only lasted a few days and were not that bad. You mainly just take one infusion at a time and don't think about the ones ahead. You will deal with those when you get to them. You will get through each one, one at a time. The main thing to think about now is: The hardest part of number one is finished! Should be getting better for the next 2 weeks.
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looking for next steps for my young husband
Merry Christmas from Denmark
Father’s CRPCa Failed chemo (Cabazitaxel,Docetaxel) and Failed LU177
Hi Everyone
