At a Dangerous Crossroads

[Bogiedog]

I'm in the throes of a serious metastatic illness:  PSA 300+ and more than 20 mets.  Have un through most of the usual treatments (lupron, doxetaxel, zytida, xofigo and xtandi.  In surprising good health, for now.  It won't last, so I want to try and get ahead of this with any ideas this brain trust comes up with.  Also very willing to share my knowledge and PC.

[mshariff]

Sorry to hear that Bogiedog. I am on Xtandi, and if that stops working, I'll be in the same boat as you. Have you discussed the life expectancy with your doctor?

[Bogiedog in reply to mshariff]

She, like most doctors, dislikes having to "look into the crystal ball," as another oncologist I had calls it.  I'm presently taking a break from all treatment and won't resume until after I return from a trip to Italy in May. I want that trip to be free from the many obnoxious side effects I have had for the last two years--it may be my last trip, so I'm determined to enjoy it.

I meet with her in late May to compare scans taken at that time with others I had done in January and March  We will decide the next treatment step(s) and I will be asking about longevity estimates point.

[mshariff in reply to Bogiedog]

Good for you.

There are many miserable healthy people in this world.

We are just more aware. Enjoy Italy. Great place.

[Hidden]

Hey Bogiedog;

I just replied to your reply to me, and then ran across this. If you're looking for a newly developed drug study, which you look like you could use at this point, look on different websites. I found the drug I was on, on the former website we are on now. Joel would probably know better how to get in touch with someone. I also found some studies at U of Penn, but no prostate studies.  You may also want to check local universities and cancer centers, I'm certain that more studies are available. Good luck in your endeavors.

Joe

[Dan59]

I hope your pain is controlled well, If You were looking for a clinical trial, just go to clinicaltrials.gov and type a city you would be interested in and prostate, the available trials would come up, I think I would stick to phase 3 at this point if in fact you were even interested in a trial. I wish you the best, and keep us all informed

Dan

[Bogiedog in reply to Dan59]

Thanks, Dan, I'll check it out.  One problem is that my doc has said that a bone marrow biopsy (for genetic information) would be "dangerous," given the locations of my metastases.  I will require an explanation of that when I see her in May.  Doesn't make sense to me.

[Dan59 in reply to Bogiedog]

Bogiedog, I do not see the value in bone marrow biopsy, how would it change treatment? In what way would it help? I choose to believe my bone mets are are really degenerative bone disease, and would be bummed to know they are really cancer, lol. Or maybe you are doing it for a clinical trial of some sort.

 I know I would not want them biopsying my bones.

 I think there are scans that are more definitive than bone scan but not sure what they are. Others here know. When you do treatment it will shrink the bone mets , and with some luck it you could get a complete response with only 6 or 7 spots, which means they could be totally resolved, I have heard of it. I think it is also key to start zometa for your bone disease, The old dose for zometa is every Month, Years ago Sartor said it may be to toxic and put me on every 3 months with zolodex, I never had any issue, I also asked for a slower infusion.

[Dan59 in reply to Dan59]

Bogiedog

I thought I was responding to someone else when I said 6 0r 7 spots. I am still not used to this format.

 Sounds like you are in very good hands at DFCC with her.

[Bogiedog in reply to Dan59]

Unfortuntely, a scan showed mets in 10 locations in January, 21 in March.  I will have another scan at the end of May.  I'm trying to NOT think about the possible outcome, especially with my PSA doubling each month.

[Bryan_Metcalf_UK]

Jetvana will be another option for you

[maack1]

Sorry to learn you have failed the near extent of medicine developed to treat advanced, metastatic prostate cancer.  It would appear Jevtana/cabazitaxel would be your next option. 

[Bogiedog in reply to maack1]

That combination will be on the table when I next talk with my oncologist. One problem I have is that I had very serious side effects with docetaxel, including two allergic reactions at the fourth and fifth infusions.  Both were managed, but they scared the hell out of me.

[skateguy]

I have been living with metastatic prostate cancer for almost six years. Over that period of time I have come to believe from my experiences and talking to oncologists that our medical institution is flawed. Doctors can only prescribe FDA approved drugs/procedures. The FDA sets the bar so high that only patentable drugs and procedures can make it through the process. There are doctors outside this country that believe other methods are effective in eliminating cancer. I believe that doctors in this country should be able to make patients aware of other methods that along with FDA approved drugs may be beneficial to a patients’ health and quality of live. I too am in good health less the cancer and side effects. I’m seriously considering going to a clinic outside this country in the near term and maybe you should also. Research.  

[Bogiedog in reply to skateguy]

Interesting thought.  I hadn't considered that.  In saying "Research" I assume you mean I should research the possibilities.  Do you have any clues as to where I should start?

[paulofaus in reply to skateguy]

Hi Skateguy, I am newly diagnosed, but I am prepared to go anywhere in the world, if they have sound treatments, with some basis in science. I'd be interested to hear what you've found or where you intend to look.

[skateguy in reply to paulofaus]

I have read a couple of books on alternative cancer treatments, tried a number of therapies and have talked to a number of doctors/health professionals over the last 5 ½ that I have had advanced PC, and I have decided that I will go to the Immunity Therapy Center in Tijuana Mexico. I feel confident about my decision. Each one of us has to acquire knowledge, and that coupled with our own unique life experiences will allow us to confidently make decisions in our own best interest, as we care more than any medical professional. Each one of us needs to be in control of which therapies we will subject ourselves. I’m grateful that western medicine kept me alive this long, with the help from non-traditional therapies, to develop a different prospective IRT PC therapies. Again, do your own research, don’t listen to me, and form your own conclusion. This may take some time but let’s be glad PC is one of the slower progressing cancers. Good luck

[Bogiedog in reply to skateguy]

I'll look into that possibility.  Only drawback is that I grew up in L.A. and Tijuana was ground zero for nefarious activities that wouldn't be considered treatment.

[lescoh]

Hi Bogiedog,

Some thoughts on your situation:

First, enjoy Italy.  Been there twice, enjoyed it immensely, and would love to go back, but I'm not up to that kind of travel at this point.

Have you done or considered Xgeva (denosumab), which was not included in your list of things you tried?  It has been effective in retarding the development of bone metastases, and is regarded as a little more effective, with less in the way of side effects, than Zometa. 

You might check into the possibility of getting galeterone on a compassionate basis.  It is presently in a Stage 3 clinical trial, and is effective with mcrpc when Zytiga and Xtandi are not, or when they eventually fail.  It is believed that the reason for this is that galeterone is not affected by the presence of the splice variant AR-V7, which may be a reason why resistance develops to Zytiga and Xtandi. 

Sometimes, taking a holiday from a medication and restarting it at a later time can work again, at least for a while.  But it would be hard to say which one to try it with.

Again, enjoy - and good luck!

Les

[Bogiedog in reply to lescoh]

Thanks for the very useful reply.  I'm standing down from tartlet now, just to remind myself that I have a life aside from cancer treatment.  It may wind up costing me some months somewhere downstream, but that doesn't shake me up much.  I'm a writer and this poem, one of 80 I've written in the past year, explains my attitude.  I'll hoist a Montepuliano to you when we get to Tuscany.

Physical disease?

Life afflicting life

to prolong that life.

Quality v. quantity to be sure.

More important,

spiritual need may contradict 

the physical.

People infer it is noble to fight cancer.

How?

    

    Follow doctor's orders?

    Eat your veg and bananas?

    Walk a mile or two each day?

    Outthink the mindless beast?

    Suffer any indignity to win?

Hundreds of thousands of doctors

use an expanding universe of drugs

that address each cancer, 

each morbid condition.

Yet those tiny cells,

lacking intelligence 

that we can understand

continue to turn

morbid into mortal

with the contents and actions

of their mysterious existence.

Life isn't a war.

At best it's a walking dream

filled with our feelings,

our loves and our dangers

all felt and honored

even if they horrify—

that's the price of ecstasy.

I can’t wage war.

I need nurture not conflict

and victory has no place

in the largest, most crucial

part of my reality…

the spirit that guides the life within.

    April, 2015

[Fastf250ps]

Try superheat treatment in Germany near Munich (Brandenburg??).

[Bogiedog in reply to Fastf250ps]

Thanks.  Another to put on my research list.

[Fastf250ps in reply to Bogiedog]

I can get more info. if you need it. Let me know. God speed!

[AlanLawrenson]

See my very detailed reply to Paul in Western Australia.

[Bogiedog in reply to AlanLawrenson]

Will do.

[Bernietoocute]

Bogiedog, I also am in the same boat - have been on same treatments. Can you please tell me the order in which you took them. 

[Bogiedog]

Zytiga, Docetaxel, Xofigo and Xtandi (briefly().  Lupron throughout.

[Bogiedog]

Well, travel fans, I'm in Siena, Italy and I've been troubled by fatigue, but still able to walk two or more miles a day.  If your disease allows some degree of mobility, my suggestion is to travel to some place that you love--this is definitely that for me.

I figure this may be the last long trip I will be able to take and I'm cramming it full of memories of delicious food, beautiful views and happy people.  When I'm back home undergoing some vile kinds of treatment or just hurting, those memories will mean a lot.