Hey Guys, just thought I'd check in with an update as I haven't posted anything in ages.
Today marks three years, since my Urologist delivered the news "you have cancer" followed soon after by "stage IV, spread to your bones in about a dozen places". I had just turned 49, so it was the last thing I was expecting to hear.
The past 3 years have flown by, but a lot has happened.
In summary, I was diagnosed Gleason 10 after suffering classic symptoms for several months before diagnosis. Soon after I was given a bone scan confirming bony metastases. I went straight on to an anti-androgen, followed shortly after by Zoladex implants. about 4 months after diagnosis, I visited a doctor in Florida for cryo-immunotherapy. 3 months later, after I started getting significant bone pain, I went back for round 2. 3 months later, I went back onto Zoladex and then started chemo (Docetaxel) for 6 rounds. About 6 months later (1.5 years after diagnosis) my PSA tarted to rise rapidly whilst o Zoladex and I was declared 'castration resistant'. I was started onto Xtandi, which improved my symptoms, but a biopsy a few months later revealed that my prostate adenocarcinoma had morphed and was now 90% small-cell and 10% sarcomatoid. I had two TURPS in 2 months, to allow me to pee and I went from self-catheterising to 100% incontinent. CT and PET scans revealed I had tumors in my chest and small lesions in my liver.
I was moved onto cisplatin/etoposide with 26 Grays of radiation to the prostate (cyberknife). After that failed to slow the progression, I was moved onto cabazitaxel. After even more evidence of progression, I was taken off all medication, with the exception of Zoladex 3-mthly implants. My oncologist told me there was nothing further to offer me. I had some PET scans as pre-requisites for Lutetium177, but I was told that based on the results, I was unlikely to respond. I had a lung biopsy testing for CP1 and that came up as zero, so I was told immunotherapy was also a 'no go' for me.
Here I am, I've just turned 52, the primary prostate cancer in my bones appears to be well under control, but the soft tissue mets in my chest and liver seem to be progressing and I have no treatment options on the horizon. I have incredible pain in the prostate, which makes it very hard to stand or walk.
I hope you guys are doing better than I am.
Cheers
Paul.
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paulofaus
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52? This is very unfair .I don’t know anything ,but hearing what’s going on with you, hits home brother.. Not to be able to stand or walk ... without incredible pain is horrible .. I am sorry that you suffer so .
Thanks, I am still here, so I shouldn't complain too much, since I joined this forum, some of the members, who were a great inspiration to me (such as Dan59) has lost their battle. I am thankful for every extra day I have with my kids, it just burns me up to think they might grow up without a Dad.
You have been through the wringer. Glad I had prostatectomy even with mets. Then the blessing of every drug we tried working wonders. (aside from making me a complete invalid for four months while on Xtandi full dose) Cut dose and recovered somewhat.. New normal kind of sucks, but nothing like you. Best of luck to you.
Thanks, in hindsight, I would have been better off having an RP, but I didn't. You've got to make these tough and far reaching decisions about the course of your treatment, with often very little in the way of hard facts to go by.
Paul, your post started out upbeat! I’m so sorry things are going this way. I hope others have ideas based upon their own experiences. I’m hoping you just keep hanging on against the beast.
Your post is tough to read. All of us on this forum are thinking of you. Are you seeing a good research oncologist at a national cancer center? Clinical trials may indeed be an option for you.
Hi tallguy2, I am seeing a research oncologist and my radiation oncologist is widely published in the lancet. I'm not sure what a national cancer center is...I'm from Australia, so perhaps things work differently over here?
My wife and I are making our 5th trip to Australia this September. Doing what few Americans do: driving with friends from Queensland; we are starting in Melbourne and ending up in Perth.
Paul,
I am very sorry about your pain. Please find another MO to see what other options you have . I hope you feel better very soon.
Also I just started taking 15 mg of Boron daily.... It reduced my PSA 30% immediately ( I had PSA test today -- 3 days after starting boron supplementing). They come in 3mg capsules take throughout the day. It has definitely helped me.
digginghealth.com/boron/
newsmax.com/health/health-n...
also --- M D Anderson -- is doing combo checkpoint inhibitor trials... Yervoy and Optova --- and Keytruda -- you can check the NCI trials listing.
Sorry,I dont believe I have any special healing power that I can send you.
But I do believe in the power of praying when you do the praying.
Believing in something (doesnt matter if its a prayer, meditation ,mantra ,etc) has a lot of influence on our healing.
So here are my suggestions:
-get some pain reliever for your pain.even the bad name , opioids do the job when using it responsibly
- have something to believe on. Pray, meditate, repeat a mantra ,whatever suits you but do it regularly.Try to focus on a purpose that will help you with your fight (for me it is seeing my daughter building a loving relationship with a partner that may help her to overcome the grief when my time will come)
-Live today. try to enjoy every moment.Easy to say ,hard to do
BTW, have you discussed with your doctor the list of clinical trials for small cell cancer in TA blog
Thanks dorke, I've been taking opioids, but they are only reducing the pain by a little bit. I was assessed for clinical trials for Lu177 and also for immunotherapy, but I was deemed 'unlikely to get a response'. I will keep looking.
Sorry to hear about your situation, Paul. It's so unfair, especially at your young age.
All I can suggest is to get a second opinion as soon as possible and look for clinical trials.
My father is fortunately still doing well on Zytiga (11 months so far), good thing he had prostatectomy despite having a few local lymph mets, and that really helped slowing down the disease.
Paul - You and I joined this forum around the same time and although our disease course is different we shared in the under 50 club with children. You haven't posted in awhile and I was wondering how things were going with you. You've had a tough go of it and I'm sure your family has been right there with you. You and your family are soldiers. This disease is horrible and guys on the younger side of it have to deal with things that make it even more difficult. Good to see you post but I'm sad at the news. Keep that Australian sun on your side and stay in touch with us.
Thanks mate, yes all of your comments are valid. I stopped going to my local support group for Advanced PCa as all the guys were 20+ years older than me. Their issues were totally different to mine. I'm still struggling with questions like, should I keep working? Should I tell my kids how serious my condition is? Should I do more travel now, while I still can?
You need a fix for that pain . Then quit job, go on vacation tell the kids and spend precious time alone with the family. If it were I.. Peace Paulofaus.
Possibly Don, my MO is looking into this for me. I can only do trials, which are local to me. I would travel overseas if something looked very promising, but it's easier said than done, when you are still working full-time and raising young children.
Hi, yes, se above my comment "I was moved onto cisplatin/etoposide with 26 Grays of radiation to the prostate (cyberknife). After that failed to slow the progression, I was moved onto cabazitaxel." Perhaps I misspelled it?
Hi, I'm not a religious person but I appreciate you praying for me all the same. Cheers Paul.
I feel like I've walking this journey alonside you since you began like many here. We were both diagnosed around the same time and had similar treatments. I'm sending my most hopeful thoughts and prayers across all those miles. This is a tough disease and you have fought it hard. Really hoping that you find a treatment that can help you continue the fight. We are with you, brother.
Not sure who your Oncologist is but say to me, "No hope" and you are fired...you're choice of course...Have you had genetic testing yet? The combo of Opdivo and Yervoy (Checkmate 650 trial) worked well on about 10% of patients that had chemo previously....
All I can say is what a great group here that is agonizing along with you and doing everything they can to find hope. I hope and pray something in this long list of advise will garner results.
Tears fell while reading your post because like you Paul, my husband is also young and was diagnosed last yr at age 44, gleason 9, mets to several lymph nodes and bone areas. Like you, he also has pains in the prostate area making it difficult for him to walk from time to time. So I can imagine what pain you must going through right now and what your family and loved ones must be feeling right now. But I admire you for sharing your story and I can feel the strength and courage in you as you were writing this post. I am praying that you may be able to find other treatment options to help you specially with your pains. Hopefully the suggestions of all the knowledgeable people in this forum will work for you. Hang in there pls, stay strong and remain faithful. 🙏🙏🙏
Hello mate.... I am being treated for a lung melanoma with the Immunotherapy drug Keytruda and it's working... Can it work for you? ASK.... I do hope you can and that it works. What else can I say... you gotta keep fighting this bastard. Kick it in the balls. I will say a prayer for you and your family. Remember God is on your side.
Hope your holding up well mate. Your story was the one that brought me to this site. I was incorrectly diagnosed with prostatitis which delayed correct diagnosis as I believe you were. God knows where we would have been!! I lived in Aus for 17yrs so feel I have a connection there. I am back in the UK and it was this illness that made me want to stay. Close to family etc. My only advice would be to seek a second opinion. I have and I feel much better with an oncologist who I believe has my interests at heart. I’ve just recently completed a course of cabazitaxel, I’m castrate resistant and Xtandi did nothing, and am awaiting scans to see what it has done. It’s a tough situation you are in but I wish you all the best. My thoughts and prayers are with you mate. 👍
Thanks Nalakrats. I had my PD-L1 checked from a lung metastases biopsy. I came back as 'zero'. I thought high T (or BAT) was dangerous, especially if you have pain (which I have in spades).
Are you doing anything holistic ? I was 53 now 58 . I felt like I was 83 my first years with APC. This is such a convoluted mysterious APC . At times there seams no rhyme or reason in different outcomes after treatment. I remember when you joined here. Beautiful smiles on both of your faces. I understand your age and plight amigo . I can relate . I wish I had a majic wand and I’d just blast APC from the planet .. from you and all of us . How are you spiritually ? For me this the big wow factor. To improve my spiritual standing ..... when the pendulum swings low for us on its last swoop I want to be prepared to meet it with a smile and say I’m ready to go . The flesh is weak . Thinking about your children being without their father won’t help you . You have such a tremendous responsibility to them to teach them this life lesson , a brutal lesson .. I cant imagine how that feels to think about that .. mistakes in life , ive made more than a couple. From what I take of you is that you are doing everything right for your family . I am praying for a miracle for you young man . May God have mercy on you . 🙏
Hi Paul like you I haven’t posted anything for ages but I wanted to let you know I’m thinking of you. You are a fighter and I hope some new options come to light for you.
Thanks Ant. My oncologist must have had a change of heart,/mind as she's started me on fortnightly immunotherapy (nivolumab). Fingers crossed it does something positive.
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