Newbie here - sharing my story

98rkrider Member Posts: 6 Member
edited April 2022 in Prostate Cancer #1

I don't know if any will find this useful, nevertheless, I thought I would share.

Early in 2021 a digital exam of the prostate by my GP led to a visit with a urologist. PSA was 40+ and scans revealed Metastatic Prostate cancer. It had spread throughout my bones and a small amount into the lymph system. Time to cowboy-up!

I was told that they would not remove the prostate since the CA was too far advanced. I had my gonads removed to starve the CA of the testosterone that was feeding it's growth. Moved on to an oncologist that had significant experience treating Prostate CA. He offered a chemical (Abiraterone) to further starve the Prostate of testosterone or a chemotherapeutic called Docetaxel.

I chose the Docetaxel which was to be taken every three weeks for a total of eight doses. Unfortunately, I am one of those that had severe reaction to the Docetaxel. After 4 doses the oncologist refused to give me a fifth dose stating that I would not survive a fifth dose. We switched to Abiraterone 750mg every day. It took a while to recover from the Docetaxel's side effects, though the peripheral neuropathies are still present with some days worse than others.

Last week my PSA has, as of now, dropped to 0.3, yahoo. Recent scans show a marked decline in bone involvement and no lymph node involvement.

Compared to where I was 11 months ago I am very pleased. I go to work every day and still enjoy most everything I did before. Fatigue seems to be the most irritating ongoing factor. I will turn 70yo in May of 2022 and am looking forward to riding my Harley from the Idaho panhandle down to Southern Arizona and New Mexico this coming summer to visit my brothers.

My faith in God has remained strong throughout this challenge and I give a big tip of the hat to my extraordinary wife for standing alongside me every step of the way.


  • Old Salt
    Old Salt Member Posts: 1,119 Member
    edited January 2022 #2

    Thanks for posting; definitely useful.

    Physical castration isn't that common among prostate cancer patients, but does make sense for many.

    That ride you are planning sure sounds like fun. Perhaps the pandemic will be less of a concern by then?

  • Rob.Ski
    Rob.Ski Member Posts: 113 Member

    I find everybody's story useful. There is a wide range of conditions, positive and negative outcomes, all good info.

  • VascodaGama
    VascodaGama Member Posts: 3,598 Member

    This is a successful story. Thanks.

    Hopefully your symptoms subside. Have a good time along your trip.

  • lighterwood67
    lighterwood67 Member Posts: 363 Member

    Thanks for posting. I see victories in your journeys. The human side of dealing with this cancer has always been of great significance. So take care for those of us that travel with one of the "Emperors of all Maladies". Keep posting.

  • 98rkrider
    98rkrider Member Posts: 6 Member

    You are absolutely right - physical castration is not very common. But as I assessed the degree of spread of my CA it seemed to me that immediate and aggressive measures were necessary hence my decision for castration and docetaxel. The weight gain I was warned about has not occurred and the mood swings/hot flashes are infrequent and tolerable.

    I am looking forward to the ride and the pandemic will not be a problem.

  • 98rkrider
    98rkrider Member Posts: 6 Member

    One thing I did not mention in my first post is something I have learned over the last couple decades and that is to be flexible. Someone else has coined the term "new normal" and I believe that about sums up my days.

    No. I cannot ride a motorcycle 1000 miles in a day anymore but 500 is do-able. I cannot go to bed and get a continuous 8 hours of sleep anymore but I can get enough. I cannot work in the garage all day but I can still manage to maintain my vehicles, it just takes longer. I'm not going to win any prizes on the Trap range but I can still shoot.

    The "new normal" may be partly the CA and partly being a few months shy of 70. Whatever it is doesn't really matter. I try to manage each day and focus on what I can get done and not on what I cannot. Some days are more of a challenge, like when the drug side effects are more pronounced. I'm sure you guys experience that.

    This morning I awoke at 3:45 and laid there till 5:00 (it was comfortable and warm). I got up at 5:00 and pedaled my stationary bike for 45 minutes then prepared a pork tenderloin to go into the sous vide cooker. I still got to my office by 8:00 and the sous vide just sent me a message that it was done cooking. I called my wife and she took it out for further prep for tonight's dinner. So far it's a good day!!

    Hope you gentleman have a blessed day today - don't hold on to anything to tightly!!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,791 Member

    98, your story is not only useful but highly inspiring as well. The level of recovery you got from serious Stage 4 PCa will give hope to many here. There will of course be careful follow-ups with the medical oncologist.

    What model is your scooter ?


  • 98rkrider
    98rkrider Member Posts: 6 Member
    edited January 2022 #9

    Thank you for your kind words! I follow up with the oncologist every four weeks which includes blood tests.

    My Harley is a 1998 Road King with substantial mods; I replaced the original engine with an S&S 111, the transmission was replaced with a Baker DD6, plus suspension and brake modifications.

    My wife rides a 2016 Road King. We enjoy traveling together.

    Max, do you ride?

  • eonore
    eonore Member Posts: 160 Member

    Dear 98,

    Finding your post tonight was like finding a jewel! What a great lesson in how to live life.


  • 98rkrider
    98rkrider Member Posts: 6 Member

    Hey guys, this is just an update. I think and pray for many of you often. This chapter we are all in is a challenge, for some of you it's a whole lot more difficult than for others.

    I have read many of your accounts and I must confess that I am glad to have a stage 4 metastatic prostate cancer that is inoperable. To those of you that are dealing with a prostatectomy and all of it's side effects plus the follow on treatments --- well, my hat's off to you. Your chapter is much more difficult than mine and I hope and pray that you will have the strength and resolve to handle it.

    I had my follow-up appointment with the oncologist last week; the PSA remains at 0.3 and the rest of the blood work was all good. They are scheduling me for another bone scan at the end of the month to compare with the prior one and determine the status of the cancer's spread. My pain level has not changed and I am not experiencing any new symptoms so I am hoping for a good report. I am also hoping that they will switch the monthly Zometa infusion to once every three months - I hate feeling so wiped out after that treatment.

    Well that's it. Any motorcyclists out there?? I would enjoy hearing from you!!

  • george1945
    george1945 Member Posts: 1 *

    Dear 98 -

    You have given me a big boost in morale.

    Been feeling a bit down as only received my prostrate biopsy results - Gleason score 4 + 5 = 9, two cores positive, 40%.

    Going for a PET Scan in 5 days' time to see if the prostate cancer has spread to my bones and lymph nodes.

    Will advise.

    George (Australia)

  • Timhas2
    Timhas2 Member Posts: 1 *

    Hi All

    Newbie here been reading some post and liking them. I was diagnosed with prostrate cancer November 2021 and we decided to watch it. This November they did another biopsy and it came out as a 4+3 Gleason score. March11,2022 I had University of Calif San Francisco (UCSF) look at all my findings and they gave me a Gleason score of 5+4. I've had MRI, Bone scan, and a CT scan with a injection. They have seen a few very small spots but haven't said there was any cancer in them. One of the scans showed an enlarge Thyroid and I am having an ultrasound done on that March 16. UCSF is lining up a Pet-scan if my insurance will allow it. I an feeling decent and my diabetes is good control. Just not sure how serious this is for me.

  • VascodaGama
    VascodaGama Member Posts: 3,598 Member
    edited March 2022 #14

    Hi Timhas2

    The increase in the Gleason rates and score sets your case as very aggressive and therefore with high probability for existing extraprostatic extensions.

    It seems that the scans done previously didn't find metastases. With the PET scan your doctor is now trying to certify if there is a chance that your case is contained. This would influence recommendations for the choice of a treatment.

    I wonder your age and the number of positive cores from the biopsy. Typically, surgery is avoided in aged patients. If metastases are found in scans, radiotherapy is chosen as prime. If the spread shows to be wide, then doctors recommend palliative approaches.

    Best wishes and luck in your journey.


  • 98rkrider
    98rkrider Member Posts: 6 Member

    Just an update - oncologist last week gave me the news that my PSA remains at 0.3 and the PET scan revealed sclerotic bone lesions through out my body with no advancement in the cancer and what looks like minimal uptake in the prostate. I am taking all of that as a good sign. The aberaterone seems to be doing the job of keeping the testosterone in check. They have decided to switch the Zytiga to once every 3 months, a decision that really pleases me.

    Fatigue seems to be my biggest issue at this point - one day is great while the next day might be considerably less than optimal. I sold one of my motorcycles and have resolved that I probably won't be able to ride my remaining Harley to Arizona/New Mexico but I can still take the chevy to visit my brothers.

    My wife wanted e-bikes so we bought a pair of them, I am hopeful that the increase in physical exercise will benefit my energy level and help to keep the cancer at bay. Last weekend I pedaled 22 miles -yeah!

    I continue to pray for many of you as it seems your treatments and daily routines are much harder than mine.

    Blessing to all of you!