Hi all, new to the site.

[p3d1]

Hi Everyone,

Found your posts and encouraged by your positive attitudes.

Diagnosed November 2017 with Stage 4, Gleason 4+5 ( 9 ), sample taken during TURP surgery, (Not a good experience!!) age 57.

Bone scan showed 4 bone mets in the Pelvis, 1 bone met in a rib. CT scan showed both Lymph nodes in the lower stomach area involved. CT scan also confirmed bone mets.

PSA was 10 in July, 30.41 in August, 41 in September, 83 in December 2017. Bone pain in the front of the Pelvis while walking started then.

At this stage it was not looking good really.

Started on Firmagon in December 2017, PSA dropped to 1.41 almost immediately.

Also prescribed Calcium and Vitamin D tablets by the Oncologist, a great guy.

Started Docetaxel Chemotherapy in February 2018, 10 cycles every 2 weeks. PSA went down to less than 0.2 within 6 cycles and kept going down to 0.07 at the end of the 10 cycles. Did not have any serious side affects during this time. The horror stories about Chemo do not affect everyone I found out.

26/01/2018 - 1.41....15/02/2018 - 0.57....01/03/2018 - 0.37.....15/03/2018 - 0.28

29/03/2018 - 0.23....12/04/2018 - 0.1....26/04/2018 - 0.14....10/05/2018 - 0.08

24/05/2018 - 0.09....07/06/2018 - 0.07

13/07/2018 - <0.05....10/08/2018 - <0.05....21/09/2018 - 0.1

02/11/2018-????

CT scan after Chemo now showed the lymph nodes were clear, (not evident anyway in the scan). Bone mets were very faint also. Felt very positive about the response. The oncologist was happy as well.

Started Zytiga after Chemo, late July 2018. PSA on the last two blood tests were down to <0.05 (undetectable). Now just hoping that the response stays durable.

I have read Charles Snuffy Meyers book and am following his program. I think that the ability to try and help myself is good for me. Everyone is different.

Next visit is 6 weeks and we will see where we go from there. A couple of questions that I have that maybe you can help me with. Possibly a test for the DNA repair defect genes, BRCA, ATM etc.... (My sister passed away from breast cancer when she was 45)

What happens the Prostate cells during the low PSA stage of treatment, i.e do they die off naturally over time if they are not active? Could not find any info on this in my research.

Does anyone have experience of the newer treatments for DNA repair defect cells.

Good luck to all on this journey.

Ger.

[Tall_Allen]

It sounds like you are getting good treatment and good response. There's a relatively inexpensive test ($250) that you can get for germline (inherited) defects:

pcnrv.blogspot.com/2018/02/...

Many vulnerable cancer cells are killed off by hormone therapy and chemo.

[p3d1 in reply to Tall_Allen]

Thank you Allen for the link to the germline test and the info on the dormant cells. Appreciate the quick response.

[Canoehead]

Great results so far! With the number and location of your bone Mets you may be considered oligometastatic and qualify for local therapy in the form of radiation that has the chance to knock this out completely. No conclusive studies on this but early anecdotal data suggests the possibility of cure or durable remission in some people. Look up the work of Dr. Scher at MSK.

[p3d1 in reply to Canoehead]

Thanks Canoehead, I will check out Dr. Scher’s work. My oncologist spent 5 years at MSK, it seems to be one of the leading centres for advancd treatments. I feel lucky to have such a good oncologist on my side. The hospital I attend is just in the final stages of building a new radiology wing. Hopefully this may open up that possibility for my treatment.

[j-o-h-n]

to p3d1: Weren't you one of the characters in the Star War(s) movies?

BTW Where are you located (on earth I mean)? I'm nosey.

Good Luck and Good Health.

j-o-h-n Saturday 08/25/2018 2:01 AM EDT

[p3d1 in reply to j-o-h-n]

j-o-h-n,

Living in Southern Ireland. The name comes from the initials of my company but Star Wars sounds like a better back story.

Cheers.

[Daddysdaughter in reply to j-o-h-n]

Love your sense of humor! Hope your doing well John!

[j-o-h-n in reply to Daddysdaughter]

Thank you...I'm still alive and kicking (make that shuffling). Hope your Dad is doing well, it's such a tough haul.... God Bless Him...(u 2).

Good Luck and Good Health.

j-o-h-n Saturday 08/26/2018 6:36 PM EDT

[davebliz]

Sounds very encouraging! What are your testosterone numbers like? I started on Firmagon 2 months ago. PSA dropped from 38 to 0.69. Testostrone initially dropped to 0.3 after a month. Oncologist said he would like it lower and wants to put me on Casodex. My next reading was 0.5, haven’t seen Oncologist yet. Is this concerning? Thanks.

[p3d1]

to davebliz,

My testosterone went down to 0.2 in late January 2018. I don't know if your numbers are concerning because I have just started myself. It is a steep learning curve we must climb. Good luck, think positive.

[EdBar]

Sounds like you're on the right track. I was given a similar DX in 2014 at the age of 55. You can check my profile to see what I've done. I was a patient of Snuffy for a couple of years, now a patient of Dr. Sartor. PSA currently undetectable scans clear. Just hoping it lasts...

Ed

[p3d1 in reply to EdBar]

Hi Ed,

The DX are very similar, you had a rough time for a while there but you are proof that a positive outlook can really help. Like you I have a lot of faith in Dr Meyers approach, for me he (and a lot of great people in this field) are driving the use of exercise and diet as steps we can take in our lives to help ourselves. Even if it is a placebo effect or we get a boost from our faith then to me "what does it matter". Thanks for the reply.

[leo2634]

Welcome to the elite club that none of us asked to join but got excepted anyway. My first diagnosis sounds almost identical to yours . I was started on Zytiga,Prednisone,and ELIGARD injections along with Xgeva for bone Mets as my first line of treatment. PSA was 14.7 to undetectable in one month. My Doctor never mentioned Chemo as yet . I read up on the beast and I guess it's the specifics and oncologists that determine your treatment. I intend to fight until I have no more fight in me and live each day with giving thanks to God. Remember my friend everyday above ground is a good day!! Never give up never surrender. Leo

[p3d1 in reply to leo2634]

Leo,

What a club! definitely did not ask to get in

Chemo was not the nightmare that I believed before I started it. The hospital where I got the treatment were on top of any potential side effects. They loaded me with information and medicines that I never had to use, just in case some side effects kicked in. Was I lucky? maybe, there were a lot of guys getting treated at the same time and talking to them I got the impression that I was not alone in getting through it without getting sick.

My oncologist gave me the choice to aggressively attack the cancer. I took it, I wanted to hit it with everything I could. He scheduled 10 x 2 week cycles instead of the STAMPEDE or CHAARTED schedule of 6 x 3 week cycles, I think this helped. At the time I knew the prognosis was not good based on my numbers.

Stay healthy Leo,

Ger.

[whatsinaname in reply to p3d1]

If you took the 10 x 2 week cycles instead of the 6 x 3 week cycles, the Docetaxel dosage given to you would probably be less than those who took the 6 x 3 week cycles.

Check it out.

[p3d1 in reply to whatsinaname]

I checked it out at the end of the cycles, the total amount of Docetaxel was nearly identical. Getting it at a smaller dose but more often prevented a spike of chemo that may have reduced the SE. it worked for me anyway.

[whatsinaname in reply to p3d1]

The chemo spike resulting in side effects is usually avoided by proper hydration before and after chemo and a two-three hours session of pre-chemo drugs administered intravenously before every chemo session. There is also a PEG GRAFEEL injection given approx 24 hours after the chemo session.

This might take longer ( a few hours more) but saves one the trouble of returning to the hospital more often.

Ultimately, do whatever works

There is one guy on this board who tolerated 8 cycles without any problem whatsoever and then the ninth cycle almost killed him.

I have completed 4 cycles and am due for the fifth on the 14th of January.

Hoping all goes well & survival is not an issue Cheers p3d1 !!

[p3d1 in reply to whatsinaname]

I had 10 cycles and it really was not as bad as I had feared. The nurses were brilliant and had me on steroids the day before, the day of and the day after. They also gave me a pack of medicine for nearly every possible minor side effect. It sounds like you are in a very good treatment cycle, that is brilliant. Cycle 4/5 and my hair thinned out a bit but I never lost it and it has grown back now stronger than ever. Cycle 6/7 and my nails started showing signs of the treatment. Check out the website below. I was sorry that I did not chase down the Nail treatment they have, it would have saved a little discomfort.

polybalm.com

Good luck with the remaining cycles.

Ger.

[whatsinaname in reply to p3d1]

Thanks, p3d1, for the dope on nail balm. It could be quite useful.

All the very best,

Cheers !!

[p3d1]

SsgCulldelight wrote:

Hi all, new to the site.

Welcome, and first things first, YOUR attitude and self motivation has EVERYTHING to do with how well your treatment, recovery and survivability. Get ad much info as you can there is a lot of info and alternatives out there. Stay mobile...

SsgCulldelight,

Your post has not displayed here so I copied and pasted it from an email I received.

To SsgCulldelight,

Each of us tackle this in our own way, for me being able to do something to help myself is vital. Of course it will not be the same for others.

I am gathering information from every reliable source

and what I have found so far is that I do not know enough!

I will stay mobile as long as I can

[Lombardi24]

If you test positive for the BRCA mutation you may be eligible for Lynparza.

[p3d1 in reply to Lombardi24]

Hi Lombardi24,

If I test positive for BRCA 2 the doc is trying to get me on a panel which will possibly progress to a trial using pembrolizumab. This is made by Merck (MSD) and its a coincidence that the company I work for is designing the Biotech plant here in Ireland that will make pembrolizumab (Keytruda). DeBone from the Royal Masden in the UK recently made a presentation at ASCO 2018 where this drug had a dramatic effect on some guys (about 12%) with the BRCA2 gene repair defect.

Its a strange feeling not knowing if I want to test positive or not!

If positive i may have a chance of a breakthrough immunotherapy drug BUT I also have exposure to the danger of a very aggressive type of cancer.

I must check out Lynparza, thanks for the tip.

Ger.

[Lombardi24 in reply to p3d1]

Well I think he might be referring to Lynparza (olaparib) regarding the BRCA 1 & 2 mutations. I tested positive and am on Lynparza now and PSA did drop.

[Lombardi24]

I think pembrolizumab treats the cancer by working with a specific receptor on the cell (PD1). I was in a trial using Keytruda. It didnt work for me. I hope you get to use both. 👍👍👍👍❤

[p3d1 in reply to Lombardi24]

Lombardi24,

I would be happy to get on a trial of either, I hope you are successful with your next trial.