Advance bone cancer

[TET6489]

3 years of prostate cancer. Went to Vanderbilt yesterday for bone scan and ct scan. Dr said showed evidence of advance bone cancer. Go back next week to there advance cancer clinic. Somebody give me some info on this bone cancer, good or bad I want to know. Thanks and God bless all of you

[YostConner]

Not technically bone cancer. It's prostate cancer that has taken up residence in bones--as mine has for over six years. For a while you probably won't feel it, but it can lead to pain. Treatments include ADT, Zytiga, Xtandi, xofigo and radiation (palliative). You will probably have scans more often. What has your oncologist said so far? Or is that coming next week?

[TET6489 in reply to YostConner]

Vanderbilt has a special unit for advance cancer. That is where I will go next week. 3 years ago prostate removed with 45 radiation treatments and psa after that was 8.5. It that time going to another doctor in another town that never would,do a scan. This was the the first two yesterday I have had. I hope they can help. SCARED

[Dr_WHO in reply to TET6489]

So sorry. As stated, you do not have bone cancer but prostate cancer that is in the bones. Big difference that works in your favor. Hopefully you will get better care at Vanderbilt.

[TET6489 in reply to Dr_WHO]

Thanks

[TET6489 in reply to TET6489]

Thanks

[Daddyishealing in reply to TET6489]

I'm still learning from these amazing men, but I was petrified for my dad with advanced disease also in distant bones and fractures. you are allowed to be scared . acknowledge your fear, let it come and go, but I just want to tell you I was petrified in a ball in my bed for weeks when my dad was diagnosed and Google searches were daunting . then I found this group and found men alive 2, 4, 5 ,10 years and i listened to their treatments snd resonses. there are many treatments and non traditional protocols and clinical trials currently, and the science is advancing . I have hope that is now backed by not just faith but science and the experiences of so many men. heal on, my friend

[Hidden in reply to Daddyishealing]

Google searches are not the place to look for anything. Stay here, ask here.

[Daddyishealing in reply to Hidden]

Agreed, at first for weeks I googled, and found only one ten year pca survivor and outdated statistics. I cried every night and then I found you guys and in inspired and learning daily . light and healing sent your way

[TET6489 in reply to YostConner]

Thanks

[Daddyishealing]

Read the thread ..the nine pillars of cancer..17 yr survivor of advanced disease with so many marching along singing behind him knowing the journey is far from over and there will be joy ahead

[celler6]

It's not bone cancer; it is prostate cancer that has spread to the bones. I've kept my bone mets dormant for over a year. I am metastatic castrate resistant so my regimen is Zytiga and prednisone and monthly firmagon. I also get Xgeva every three months. I also had two rounds of chemo--taxotere and carboplatin. I ended up in the hospital shortly after with life-threatening pneumonia and sepsis which turned into ARDS which few survive. Coma for 9 days.

As far as what to expect if I were you I'd make sure the testosterone spigot is completely shut off. You need to starve the cancer cells. I think there is a high probability you will have chemo, likely Taxotere, for 5-6 rounds. They will want to put you on anti androgen hormone right away too. That's my best guess as to what to expect, from experience.

[ChuckBandChar]

Husband has bone mets which were discovered in spine when he suffered compression fracture in 2013. Had surgery and radiation. Has been on Xtandi going on 14 months. His last PSA (which we got yesterday) was .1. Like others who posted, there are drugs and treatments that work.

[TET6489 in reply to ChuckBandChar]

How does a person afford these high price drugs. Haven't took any yet but have seen prices. Medicare and a supplement with prescription plan is all I have

[ChuckBandChar in reply to TET6489]

We happen to have great insurance, but if we didn't we would have worked with Xtandi/Astellas. You can contact them directly to seek assistance. if you qualify they have a $10.00 per prescription plan. Same with Zytiga.

[RLSharp in reply to TET6489]

Tet,

Check PAN Foundation, panfoundation.org PAN covers my Medicare Advantage co-insurance for Zytiga and before that for Xtandi. So, neither of these drugs cost me anything out of pocket.

You must meet the following criteria:

 Patient must be a Medicare beneficiary and the patient’s Medicare benefit must cover the medication for which the patient seeks assistance;

 Medication must treat the disease directly;

 Patient must reside and receive treatment in the United States; and,

 Patient’s income must fall at or below 400% or 500% of the Federal Poverty Level, depending upon the disease fund.

Hope this helps you and others.

Richard

[Hidden]

Having the prostate removed, followed by radiation, and then the treating physician being satisfied with a PSA of 8.5 is quite bizarre. You might consider a malpractise suit - just to cheer you up. You will get to talk to lawyers who may give you free coffee. Think of it as an ego boost, or a free psych consult.

[charmander in reply to Hidden]

Martin you are my hero!

[charmander]

I too have bone mets. 6 spots, all but one in my pelvic region. The prostate cancer in me luckily wants to stay near its birth place so I have no dispersed mets nor soft tissue mets. Martin is right accepting an 8.5 after surgery is just wrong. Everyone knows if psa remains after surgery there are still cancer particles remaining.

You should have a bone scan and CT scan yearly if not sooner. If these do not show the mets then there are additional more sensitive scans that can identify the met locations. I also get a chest x-ray every year. I have had no symptoms to date, other than loss of strength due to no testosterone and some fatigue from Zytiga.

I have been on Zytiga for 20 months which is a good run, switching to Xtandi now as cancer has developed a work around to the Z. I am also receiving monthly shots of Xgeva which helps maintain bone strength. Still receiving my Lupron shot every 3 months too.

Stay positive, eat healthy (no eggs, poultry or dairy), exercise and stay informed. Don't look down, keep staring this in the face. It won't beat you! You're in charge, you make the decisions, you survive. Keep us up to date on your progress, you're in the pack now.

Merry Christmas Charlie