Lance Swinehart 52 years old with high-grade prostate cancer with Mets to my bones.

[lrswinehart]

Lance Swinehart I have stage 4 prostate cancer Gleeson 8 and 9 all 12 samples so the next step was nuclear bone scan .turns out the prostate cancer had spread to widespread bone cancer I had stayed working for the past 18 months .I'm 52 years old now my dad had died when I was 9 years old it turns out the my dad had died from prostate cancer would have been nice to know 5 to 10 years ago when I would of had a better chance of survival .

[Javelin18]

Im sorry to hear of your diagnosis. It’s a young age to receive this bad news, but your youth also gives you the strength to fight.

I’m so glad you found this group. There is an immense combined body of knowledge here, and compassion from those sharing in the fight.

[Javelin18 in reply to Javelin18]

There have been great advancements since your father’s time., and great breakthrough treatments in the last decade. There are men here that have lived with a similar duagnossesfor decades.

Are you seeing a Medical Oncologist? They can be the team leader for your care.

[Javelin18]

I should have read your profile before answering, but my first reaction is to welcome men to the group. It sounds like you have a good team of doctors.

I was diagnosed with metastatic PC in Janury 2021. Unfortunately it was already castration resistant from years of finesteride treatment for what my former thought was BPH.

I would advise you to get somatic(tumor) and germline (your inheritd) genetic testing. Since your father had it, there may be an inherited repair defect gene. While this makes the cancer mire agressive, it also lends a treatment path that has been successful for many.

[lrswinehart in reply to Javelin18]

I have an oncologist and my cancer is castration resistant and out of 87 genetic markers mine didn't come up but my Urologist said it's for sure genetics and mine just hadn't been found yet.

[Javelin18 in reply to lrswinehart]

I also have aggressive cancer, and didn’t show germline mutations. I’m still hopeful I can get treatments to hold it at bay, until a cure is developed. I was able to get into the early access program for Lu-PSMA, and had my second treatment December 17.

What is your MO recommending for the next treatment?

[Magnus1964]

I was diagnosed at age 42 and 29 years later I am still here, so don't give up. I don't think you are castrate resistant so soon. You have not had xtandi yet. Keep up the good fight.

[mrscruffy]

I was diagnosed at your age 5 1/2 years ago, my father also died for prostate cancer. Get genetic testing done. I am living a great life with my cancer, not dying from it. I am on treatments that just weren't available to my father 6 years ago. I caught mine early because I was being tested every 6 months after his demise. In the 3 months it took to get the surgery It had metastasized in my bones. Plenty of effective treatments out there and more on the way, It is definitely not a walk in the park but manageable

[Ramp7 in reply to mrscruffy]

Great plan, to die with my prostate cancer not because of it.

[Hidden]

I saw in your profile that you stopped working because of the cancer/treatments. You can apply for SSDI if you haven't already.

[lrswinehart in reply to Hidden]

No I said that the Lupton had stopped working one year into taking it.

[lrswinehart in reply to Hidden]

I'm applying for ssdi but I was told it could take up to 5 months to get approved .

[Hidden in reply to lrswinehart]

Yes, they are slow.

Good that you applied though. I got mine a while back and they paid a year back to my diagnosis.

[Hidden in reply to lrswinehart]

Get a lawyer who specializes in ssdi. I was rejected twice EVEN with lung, and bone metastases. As per the ssdi's own "Blue Book" lung involvement is an automatic approval, yet I fought for over a year and ultimately needed a lawyer.

[Hidden in reply to Hidden]

I’m sorry that you went through that .

[mrscruffy in reply to lrswinehart]

SSDI is a strange deal, I was denied coverage but hired an experienced SSDI attorney and was granted it after an administrative hearing. The process was easy but took a year from start to finish

[HerbieP in reply to lrswinehart]

My SSDI got approved in less than two weeks. Seems when you have a stage IV cancer diagnosis they fast path you. Give them full on copies of medical records and diagnosis. I filed my SSDI application myself, thinking if it gets refused then I'd get an attorney. Glad I didn't waste money on an attorney because it wasn't needed.

[Survivor1965 in reply to HerbieP]

Is SSDI based on income or lower income for approval?

[HerbieP in reply to Survivor1965]

It's based on whether you can work or not. If you can't work due to medical, you get ssdi

[lrswinehart in reply to HerbieP]

What state did you file in?

[HerbieP in reply to lrswinehart]

NC

[lrswinehart in reply to HerbieP]

I live in Colorado I'm going for ssdi I have a good soiled 15 years of working history and I've had to give up my CDL license of 21 years because of the cancer .

[Lyubov]

May some of the newer more advanced treatments give you good results! Sending prayers.

[Tall_Allen]

I'm sorry to hear this. But you seem to have an aggressive sort of PCa, and I don't know whether catching it earlier would have helped very much. At any rate, the blame game is a natural response, but it only creates more anxiety.

The high BP may be the result of taking too little prednisone with your Zytiga. Is your potassium low? The 10 mg prednisone they prescribe as a replacement dose is an average, but some men need a little more. Ask your oncologist if you can try increasing your dose a little (add 2.5 or 5 mg, or switch to 0.5 mg dexamethasone) and see how your BP responds.

Since it's all in your bones, Xofigo is the next logical step. Recent clinical trials show it combines well with Zytiga (or Xtandi) and Xgeva. You can also get Provenge now. Provenge (an immunotherapy) also combines well with Xofigo.

prostatecancer.news/2021/02...

If any of your metastases are large enough, a biopsy might provide some clues for therapies (rarely) or for clinical trials. Mostly oncologists focus on genomic analysis (like Foundation One) but I think IHC analysis can also provide actionable information.

[lrswinehart in reply to Tall_Allen]

The number one side affects is causes high blood pressure in November 2020 I had to stop taking zytega for 14 days before my blood pressure came down low enough to pass my CDL physical but I can't keep doing that every years .

[Tall_Allen in reply to lrswinehart]

Sounds like it may be insufficient prednisone.

prostatecancer.news/2019/06...

[mrscruffy in reply to Tall_Allen]

I learned my lesson with Prednisone, stopped taking it because I didn't like the way it makes me feel. Soon there after my BP soared and I ended up in the hospital for Potassium infusion and got my ass chewed by Oncologist

[Tall_Allen in reply to mrscruffy]

Yes, stopping abruptly is a big no-no.

[tango65]

The high blood pressure caused by zytiga could be controlled effectively by an adequate dose of prednisone and/or by eplerenone (inspra) an aldosterone receptor blocker. You could consider to consult with a nephrologist or an internal medicine doctor about he management of the blood pressure. The other new anti androgens, enzalutamide and apalutamide also increase the blood pressure.

[Chugach]

Hey brother- welcome to the club no one intends to join. I was diagnosed at 46 Gleason 9, almost 52 now. Here are a couple things I tell all those new 1) get multiple (second, third) opinions from a urologist, medical oncologist and radiation oncologist; 2) go to a major cancer center- not some private practice; 3) get genetic testing done- some markers may open up other lines of therapy; 4) pace yourself- this is a marathon not a sprint; 6) get exercise, drink water and eat a healthy diet; 7) don’t go chasing ‘snake oil’ cures stick to science and run any supplements by your oncologist. Stay strong brother!!

[Survivor1965 in reply to Chugach]

Hey Bro, I was also dx at 46, 56 now. Also Gleason 9.

Still fighting a good fight!

[spw1]

I am sorry to hear that you are diagnosed so young and maybe catching it earlier would have helped. If there is a genetic element to it that may also lead to a key to helping you with some kind of immunotherapy. Keep up your motivation and look into all possible angles to help yourself. Best wishes.

[EdBar]

I had a similar dx at age 54, that was almost 8 years ago. You can read my profile to see what I’ve done. Get an oncologist who specializes in prostate cancer, learn all you can about prostate cancer and in my opinion hit it hard, I’m not a doctor but that strategy has worked for me so far.

Ed

[j-o-h-n]

Greetings Lance, You've come to the right place for information and camaraderie regarding your Pca. Please take the advice that most of the members recommend for you. Every now and then there are plenty of new meds being introduced to kill the mighty MF beast. (note: MF does not mean My Friend or Mighty Fine)..... Would you please tell us where you're located....Get yourself a new good Medical Oncologist to help you......Remember to forget the "should have, would have and could have - cause if my aunt had a mustache she would have been my uncle who would have married my aunt..Happy New Year!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/03/2022 7:24 PM EST