Hormone Refractory

Hi,

I was just told that I'm hormone refractory and that when my PSA hits 4.0, it'll be time to start experimental drugs and maybe chemo later.

My Gleason is 9, doc says it could only be worse if it were a 10.

Had a RP and radiation in the last 2 years.

The reports showed that the cancer was in my glands, more bad news but still hopeful.

After the radiation, my PSA dropped to 0.02 in December 09, 0.2 in March 10 and 0.34 in late June.

I'm wondering why the doctor is continuing to inject me with hormones if they're not working and also concerned about how much time I should expect to have left.

We are going to lose our home, must move soon as we can not longer afford our home but don't want my family to move and then lose me within a short period. We know no body in the areas we can afford to buy a home.

Might be better to rent an apartment nearby, so that family don't have to travel far for my medical care and support systems are here for them.

Any thoughts??

Thanks in advance for any timelines. Doc is very reluctant to state anything along that line.

Monday was the shortest conversation we've ever had, all factual. Then he left the room.

My family is quite upset, daugher went into shock for two days but called to ask questions today, crying her eyes out.

She says she wants me to walk her down the ailse, see her children etc. Very emotional.......

I suggest you consult with Dr "Snuffy" Myers.

My dad lived for quite a while after Hormone Refractory, he was also a G9 (Although I didn't know anything about PC at that time.

Willie_
I am devastated to hear what you are going through. Being hormone refractory does not mean the end. What are your stats? Where do you live? I also believe in Dr. Myers. Even though BF was treated at top hospital, Sloan in NY, we are still seeing Dr. Myers in Sept. Also, I read about Dattoli Care Center in Sarasota that has the best success rates for advanced cancer. Dont give up! Also look at alternative treatment. B17, diet, supplements, exercise. There is alot of trials out as well. Look into MVD3100, Abiraterone, Ketoconazole.

 Sorry for anyone dealing with PCa at the hrpca levels.  Although your doubling time is serious, I have seen a couple patients whom had doubling times in weeks or one month. They had no way to feel comfortable waiting a few weeks to hear from their doctor or next protocol.  So, it could be even worse is that message.  Why don't you try the estrogenic drugs or Ketoconazole and see if they work for you, atleast awhile...should be way better than the chemo as to side effects and lot less costly too.  Better yet contact:

www.paactusa.org   (616-453-1477)they help hrpca all the time, their phone number is on the website, free phone discussions, too....Rick Profitt is the guy...(profitt is not his motivation-fyi).

 

I would not jump into taxotere right away especially when there are other drugs with lesser side effects that might work decent atleast for awhile, quality of life is worth????

Different people respond way differently to PCa, why? Too many variables that some of your experts cannot define or didn't define: 18 variants types of PCa or more, 3-different types of ploidy analysis upon all types of PCa's, Gleasons scoring and errors in them, possible missed biopsy areas (probably very common)..did you know you can have completely different Gleason scores in different areas of your gland? I had 3 different ones found: Gleasons 7,8,9's and 2-sets like that 12/12 biosies all with 75-95% PCa, psa of 46.6....that was 2002 Mar-April.
It is possible they missed an area or unassessed your actual scenario (to common ask leading oncologists). Then variables of your body chemistry, DNA, immune system value...etc. Some others with lesser stats than mine, gone after 3-5 yrs*., alot of it has to do with overall treatment also (combined therapies).

Hey it is complex, did our docs tell us that? Very complex is what my onco-doc says. I got an onco-doc you might like for alot of reasons, maybe an office visit would be worth the price to you? Better start seeing some docs is in your best interest. Call Rick at Paact!

*comparisons that were found on www.yananow.net comparisons, yes nobody would know how long a certain patient will live. 

Thankyou for your input.

Daughter and I saw our family doctor today and he does not understand why the onc isn't just changing the drugs/looking for something that *does* work.

We've had a meeting of the minds and decided to get another appointment with my onc and tell him that 0.34 is a very long way from 4.0 and that I'm not ready to be dismissed in this manner.

If he won't take care of this in a better way, we'll change doctors or go elsewhere.

We're in the north east, daughter thought Sloan Kettering might be good and our family doc will refer to another doc if necessary.

Must admit that when the doc said, 'we'll start experimental drugs at 4', it scared the heck out of me and I thought that was what he was expecting on the next blood test.

That's the only reason I let him inject me with the drug that's NOT working. It was fear based but this is a fearful disease.

Please pray that I can either make headway with my doc or find one who will have a better plan for my life.

Hope&Prayer- good reference example a patient whom is 11 yrs. via alternative protocols, this is why patients need to question or fire the current close minded doc and find someone else. I see this doc cashed in for himself in injecting Lupron on you-Willie B. (a vunerable patient, scared of course), I guess that is more important than letting you try Ketoconazole or other choices, that have no profits for him. (is that a reason to fire your doc?)

Am I being too harsh on this? Well when your life, quality of life, maybe longevity of life is played like a game...you analyze and decide. Hey it is your game and life to lose, not the docs. I bet you will have decent response on Keto, of course no money for the doc. Maybe you will try it and then come back and tell us, it would be great example of your testimonial and for others, so tell your doc, do not ask or beg for something. You hired them with your insurance/money and still have choices at this time. If Ralph V. is reading this maybe he can tell you some other patients whom did Keto and some responses or information concerning using it.

http://www.google.com/url?sa=t&source=web&cd=3&ved=0CB4QFjAC&url=http%3A%2F%2Ftulane.edu%2Fsom%2Fdepartments%2Fmedicine%2Fmedhemonc%2Fpeople%2Fosartor.cfm&ei=8x88TM79OcOB8ga3yrGIBw&usg=AFQjCNEwGXxGnM64ETFKZaLVf4blACw0wg

try this post, hope it works, this is Dr. Sartor at Tulane university who use to be at Harvard Medical, he specializes in cases like yours. 

Thankyou for all of the help, esp. about Dr. Sartors' information.

May give him a call and see if we're covered for a consultation with him.

I will post/or daughter will if/when we get some other news.

Right now it's pretty depressing and I'm just not well at all.

Can't sleep, nausea is awful and my debilitating headaches are dreadful.

Lot's of weakness and having memory loss/lack of focus also.

Willie- This is much easier for me to say and hard for you to do but you cannot get down. This lowers your immune system and spirit and lets the "C" take over. There is something out there for you! I know there is. Nausea, headaches, etc are from stress that again lowers your immune system. Please let me know if you come to NY. I wish Sloan or Columbia was an option for you. Please have your daughter "talk" to us through your acct so that we can help you along the way.

willie,

please go for the second opinion, you have nothing to lose and possible everything to gain. you have to know all your options in your situation. good luck

I have just left a message that we want another opinion.

Hoping it won't take too long for the appointment.

Thanks again.

I'm going for a second opinion on August 9th.

We're hoping there is something better than just waiting it out.

Will post again after the appointment.