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Friend just got 6 months to live prognosis.

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Posted 5/29/2014 1:25 PM (GMT -5)
Typed this up the best I could... any questions, go ahead and ask.

Just looking for advice and such.

61 y/o Male.

FEB/2013 Gleason 9 Prostate Cancer.
Started targeted radiation treatments and hormone therapy.

FEB/2014 Micro mets caused spread of Cancer to bones.Got radiation for areas of most pain. First femur, then shoulder, then femur. One at a time, working on one with most pain first. Over several months. Started on Morphine IR, Morphine ER, Ondansetron (Zofran), Prednisone and Zytiga. Was given a diagnosis of 1 to 2 years from the start of Zytiga but doctor did not tell me until I asked in May.

March 2014, Cancer broke collarbone.

Late April 2014, low hemoglobin/RBC, given 2 units of blood. Every few weeks this happens, due to same low count in blood tests.

MAY/2014 First Week: Started on Marinol to help with appetite. Asked doctor life expectancy, told 1-2 years. PSAs still not abnormal, very little change.

MAY 29 2014. Just got 6 month prognosis.
Posted 5/29/2014 1:57 PM (GMT -5)
So sorry! What was PSA when PCa was first diagnosed?
Bob
Posted 5/29/2014 2:53 PM (GMT -5)
cjc,

Welcome to the forum. So sorry your friend has troubles but glad you found us. Hope we can help.

Was it the same doctor who gave you two different prognoses in the same month? Any idea what happened to change the doctor's mind?

Tell us a little about the kind of doctors who are treating your friend. Sometimes we can recommend more experienced doctors who can provide second opinions. What part of the world does your friend live it? What is the nearest big city? Maybe someone knows a hot-shot doctor there.

We have guys here who have outlived their prognoses by years and years and we have had other guys who seemed to be doing well and took a turn for the worse and died just after being told they would be OK. So you never know.
Posted 5/29/2014 2:58 PM (GMT -5)
cjc84, so sorry to hear about your friend. That's a tough situation. You'll find many helpful people here, and please invite your friend to log on here too. It's a great support group. Things like a 6 month prognosis are inherently speculative, and I hope your friend can keep his chin up and keep looking for options.

Gleason 9 is recognized as an aggressive form, and those with it are usually advised to pull out all the stops. Multimodal treatment and so on. Your friend is well into the Medical Oncologist area for treatment options, and there aren't many that specialize in prostate cancer. Dr. Snuffy Myers is recognized as one of the best, especially for very difficult cases. He not only thinks outside the box, but outside the next box too. Many here have seen him and have good things to say.

We have a thread for Gleason 9 folks to share experiences, treatments, and support. Here's the link:
www.healingwell.com/community/default.aspx?f=35&m=2863652
You might find something useful reading through it. There are new options coming all the time.
Posted 5/29/2014 5:25 PM (GMT -5)
Nearest big city is Chicago.

Well, the 1-2 year prognosis was when he started Zytiga in February, but he had to ask, and he didn't ask until late April, early May. The Doctor's Cancer specialties are listed as Prostate, Kidney, Testicular, and Bladder. She is an Assistant Professor and has board certifications in Hematology, Oncology and Internal Medicine.

The Doctor that coordinated all the radiation in the Femur and the Shoulders is also an Assistant Professor, with board certifications in Radiation Oncology, and his Cancer specialties are Lung, Gynecologic, Prostate, and Bladder. As well as Stereotactic Body Radiation Therapy, HDR/LDR Brachytherapy, Prostate Brachytherapy, Intensity Modulated Radiotherapy (IMRT).
Posted 5/29/2014 7:03 PM (GMT -5)
The Hospital is pretty well known, the Roman Catholic Archbishop of Chicago is being treated at this hospital again.

I reached out to Cancer Treatment Centers of America, told them all that was going on, and they will call us tomorrow.

His latest PSAs are 17 to 20. they were 6 on February 2013 when he first got the diagnosis.

As for why the change in prognosis... she said it just spread a lot faster than she thought it would. She did say there was a new drug called Expandia that is an option. He is too weak for Chemo she said, he is too weak, he needs to be more active and want to eat, his cancer is too aggressive, too great a risk for complications like pneumonia.
Posted 5/29/2014 11:07 PM (GMT -5)
Is he still on ADT or hormone treatment? (Lupron & Casodex) Sometimes these drugs simply do not work, testosterone stays high, the treatment ineffective..Most oncologists monitor "T" levels to avoid this..But, sad as it is, once PC has metastasized to the bones, life expectancy is 1 to 5 years. No one knows for sure why some prostate cancers are so much more aggressive than others..Best of luck to your friend..
Posted 5/30/2014 12:11 AM (GMT -5)
cj,

I am a G9 (4+5) with mets in the spine and ribs. I am told (by a host of doctors) that unless I am hit by a truck, or fail to exercise, I will die of PCa, not just with it. And that event will be sooner than later. I am "investing" in good scotch and good firearms. Pleasures that were denied me in my BC (before cancer) life.

Some of us have the really aggressive kind.

I have some doubts/concerns about CTCA. They have advanced therapies available, but please don't fall for the holistic wonders that ads promise. Their adverts are, well, I can't say anything good, so I can't say anything.

But, I am getting ready for the next round - a new Lupron stint will start in June.
Posted 5/30/2014 12:39 PM (GMT -5)
The drug you tried to mention is Xtandi (aka Enzalutamide, aka MDV3100, aka Super Casodex)......can be useful on many patients. His scenario seems grave with weight loss and weakness and multiple mets, but there are still various possible drug protocols that could be tried, maybe seek more opinions. Best to you.
Posted 5/30/2014 3:08 PM (GMT -5)
Hi cjc84, - Realistically, it certainly APPEARS that your friend is continuing to deteriorate in spite of treatment. It MAY be time to consider entrance into a Hospice program, depending upon his specific situation. Only he and his Doctor(s) have enough information to make that judgment.

It requires acknowledgement that he is terminally ill, that he likely has 6 months or less to live and that care will become palliative (treating symptoms, like pain) rather than an aggressive attempt to cure. Have him discuss this prospect with his attending Physician, to determine whether the disease has reached the stage where it would be appropriate. Many patients wait too long to avail themselves of such "end of life" supportive care and needlessly suffer more because of it.

I had to urge that decision be made with my own 90 year old Father and it is very difficult to do, but when the timing is right, so is the decision, in my opinion.

Good luck to you both! - John@newPCa.org (aka) az4peaks

Post Edited (az4peaks) : 5/30/2014 2:15:34 PM (GMT-6)

Posted 5/30/2014 3:17 PM (GMT -5)
He was on the following "Started on Morphine IR, Morphine ER, Ondansetron (Zofran), Prednisone and Zytiga" until yesterday, and since a month ago, was on Marinol.

As of yesterday, he has been taken off Morphine and weening off of Prednisone and Zytiga in order to start Xtandi pending Insurance approval. Also replacing the Morphine with Fentanyl Transdermal Patch. Will also ask doctor about Lupron. He has also been started on a Potassium pill, Klor-con.

Post Edited (cjc84) : 5/30/2014 2:30:14 PM (GMT-6)

Posted 5/30/2014 4:13 PM (GMT -5)
cjc84 ...

I'm sad to hear this story. I don't know all of the factors and i'm not a doctor; but i am a fellow G9 w/ bone mets guy so i have a point of view.

My initial thoughts... based on limited information and my personal fighting streak.

* I'm thinking that there's more that can be done (note, I always think that) -- based on your description there are lots of treatments in trials (for instance, XL184, i saw it clear a man's bone mets -- held the before and after scans in my hands and looked the man in the eye) and new drugs used in combination that can still do positive things. However, once it moves from bones to soft organs, liver etc -- that's when the end of the ride is coming imho.
* Run with your friend, don't walk,to one of the people who work on the toughest PCa in the country: Dr Kwon (Mayo), Dr Meyers (Virginia), or Scholz/Lam (Los Angeles). They specialize in PCa and the tools to beat it. Cut through the bureaucracy, made decisions, and saved my life more than once already ...
* The mental game is important too ... If it was my friend i'd be gently but firmly helping him get support he needs. Psych (I get very good drugs now :-) it really helps), priest, shaman, whatever works ...

Bless you and your friend ...

Ray
Posted 5/31/2014 5:26 PM (GMT -5)
Hello cjc84:

   I am a fighter - for the past 11-years of PC with the past 3-1/2 years of it having metastisized into my liver, rib cage, lymph node and blocking both kidneys. It started for me in 2003 at the age of 60.

   Prednisone is an accompanying med that is used for Zytiga, Taxotere and Jevtana - and possibly others too. While on Zytiga, my appatite went south and I lost over 40-pounds in those 5-months. The zytiga did not work for me - but we all react differently to various meds and chemos.

   While I was at my Oncologists Wednesday, a second opinion was suggested - once the results are in from next Mondays catscan and Wednesday meeting with my Oncologist.

   Walter Stadler is a specialist in genital/prostate cancer. He is, I believe, the Director of that group at the University of Chicago - and he does much in clinical trials. It was for the clinical trials that he was suggested to me for a second opinion. He can easily be googled!

   Often, I'm told, it is difficult to get into clinical trials - and he would be the local person to talk to regarding the likelyhood. I've been advised my kidneys (blocked by cancer) may keep me out of clinical trials.

   I belong to a metastatic cancer support group in the NW suburbs of Chicago - and I have heard questionable things about CTCA.

   I wish your friend well. My med and treatment background is below. The only thing not shown is the most recent 11-weeks off of any chemo during which time my PSA has increased from 15.27 to 45.24!

   I should have direction within a week of "what's next for me"!

   One other thing is that i did not see you mention Xgeva. It has worked well for my bonescans (no change in over 2-years). They're monthly shots covered by medicare.

   I think you'll find that the oral meds like Xtandi (and Zytiga) can be partially paid for thru Part D coverage. Part B will pay nothing - unless it's chemo injected. Then they'llpay 100% if you have a supplementary insurance.

   It's needlessly complex!

   Again - best wishes to your friend. I think there are options to investigate.

Rob & Gizmo

 

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