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Lupron + Casodex stopped working

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Posted 12/19/2013 2:37 PM (GMT 0)
Hi, my name is Jack I have been fighting this prostate cancer for only two years and already the Lupron + Casodex

have stopped working....well let's wait just a minute here, Lupron and Casodex are working because my testosterone is about 5 , so even with low T my PSA is not coming down,  my PSA is 7,  this is after surgery two years ago to remove my prostate. my question is what course of action, what options do I have at this point when Lupron and casodex are working to lower my testosterone but my cancer keeps growing in my lymph nodes.

I have doctor visit tomorrow with my urologist , I already saw my oncologist, he cant help me...

I will let you know what my doc says, I think he is going to start me on another drug, with worse side affects.

I hope and pray for you all on your journey

God bless and enjoy your holiday season

Jack

So.Cal

 

Posted 12/19/2013 3:21 PM (GMT 0)
Jack,

I suggest you talk with your doctor about Provenge. Side effects are said to be minimal. I will be getting my first infusion of Provenge tomorrow.

Best wishes.

Sam
Posted 12/19/2013 3:34 PM (GMT 0)
Jack,

From one Jack to another!!

I suggest you get a medical oncoligist that knows something about prostate cancer.   For your current med-onc to say "i can't help you" renders him/her useless in my opinion.   There are numerous med- oncs that specialize in PCa that would gladly take you and most likely get very positive results.

As you are in So Cal one noted med-onc that many high risk men on this forum use is Mark Scholz MD.   He is a principal in the practice "Prostate Oncology Specialists" and his website is www.prostateoncology.com.   I suggest you call him before noon today!   He is highly regarded and respected as a leader in treating PCa.   I have not used him myself, but know men that have and I follow his writings.

Best wishes and Merry Christmas,

Jack

Posted 12/19/2013 4:19 PM (GMT 0)
Lupron stopped working for me after only six months. I was expecting it to work a lot longer. I agree with the above comments. There is always something else to try. Get the best medical oncologist you can find. Good luck.
Posted 12/19/2013 5:09 PM (GMT 0)
Jack,

Like the other guys said, there are lots of things to try, and something is likely to work so don't despair. I am curious about your statement that your oncologist "can't help you" so you are going back to your urologist for options. I'd think it would be the other way around. Most urologists are surgeons and, in term is his area of special expertise, your surgeon has already done his best magic for you. It's time to find a good medical oncologist and get on with the fight. If your current oncologist can't help you maybe your urologist can recommend one who can. Or maybe we can.

It wouldn't surprise me if the next thing they try will be stopping the Casodex. Sometimes it stops working and becomes part of the problem. But that will be for your doctors to decide.

Good luck. Keep us posted.
Posted 12/19/2013 6:40 PM (GMT 0)
There are still many options for you......fire your oncologist now.....go see Schloz or Lam at Prostate Oncology Specialists in Marina Del Rey....do it today.
Posted 12/19/2013 9:08 PM (GMT 0)
..jaxum, you are getting some good sound advice, go for it buddy. ..You deserve the best..

.....Appleseed.........
Posted 12/20/2013 1:47 AM (GMT 0)
How can I switch doctors? I am tied in to my medical program through my job, I am using Kaiser Permanente , I don't know what to do I feel stuck, Kaiser is supposedly a good group, anyone here have any comments about Kaiser hospital ability to treat prostate cancer?
I am not rich, I guess good health care is just for the rich folk.

God Bless
thanks
jack
Posted 12/20/2013 2:16 AM (GMT 0)
Jack, I led a local support group for about 5 years. We had many guys that had Kaiser. What I noticed was that if you had a generic prostate cancer, Kaiser was as good as any. However, if you had an aggressive cancer, Kaiser appeared to be way behind. What I had these guys do was get a second opinion at a Center of Excellence, then go back to Kaiser with a letter from that center outlining treatment...then force Kaiser to follow or threaten you will file a grievance. Todd 1963 had a major battle with them over provenge and won. I would go see Scholz and Lam for a second opinion, pay cash if you have too. You have an aggressive situation, but there are options, but Kaiser may not help,
Posted 12/20/2013 5:42 AM (GMT 0)
Jack, also from another Jack. I won't even get started with Kaiser…. All great advice here. You are going to need to get very proactive. Do not get down on yourself or the system. Yes the system sucks in more ways than I want to know. But in that very system, there is good. Good doctors, nurses, clerks. Un fortunately these folks have to be searched out, or lucked on. Don't discount luck.{ I don't call it luck, I call it moving mountains, but thats another story.} Its on you, Jack. My first step would be to follow Ziggy Monsters advice. Look at his signature,he ain't having an easy journey here. and don't let the NOW WHAT confuse you. He is still moving and thinking and doing. He just helped you. These efforts of his are not fruitless. Start moving to get this situation under control. It's doable , I don't know how, Ziggy or the rest of us may not either. Just move, follow lead after lead, have faith go to another Kaiser, Only you can make it move. You're situation is far from hopeless. A 7 is not that high. Demand that kaiser refer you to their top pca specialist, where ever that person is. You or your firm is paying them. Not for some weak stick doc to write a prescription for a couple of years and then give up. Digest this and the other posts . Think of what can be done, not what isn't being done. Reach for that fracking ring, man. If you got dates and times, even roughly, type a record of conversation that included the onc's words, paraphrased or exact. Institutions respond to paper. Heck when I worked for the FAA, I wouldn't talk to a Suit, without a small pad and a big pen. Good luck and keep us in the loop, we are here for you.
Posted 12/20/2013 10:53 PM (GMT 0)
I just got back from my doctor visit, and I am doing OK,
I was not telling the complete truth here ( I apologize ) I guess I am just freaked out by this thing
let me explain more clearly now, I am on Lupron and my PSA was rising so we started Casodex,
but I have only been on Casodex for two months and my PSA was 8.7 when we started and today my PSA is 7.7, so my PSA is going down ( one point ), I was freaked out when I heard it was still 7.7
because I was expecting a miracle , I was expecting to see a four or less...
but my doctor set me straight, as long as the PSA is starting to trend downward it is working...
so I apologize, it seems like my treatment is working.
thank you for all the feedback
I will continue my present course and retest in thirty days...
thanks
jack
Posted 12/21/2013 2:23 AM (GMT 0)
Its cool, you had a "moment in time ". We all do, we vent, we feel bad for venting, we do this , we do that. Then we do the smartest thing, we turn the corner and start over, shamelessly unabashed,{ as we should be}. I hope your psa continues to go down and remember there are a lot more treatments out there, other than, Casodex and Lupron. Also Kaiser works for you, not you for them. Good fortune, to you.
Posted 12/21/2013 8:01 AM (GMT 0)
Jack,

Is there a reason you haven't had salvage radiation? Your signature doesn't mention any. If your bone scan was negative, they can irradiate both the prostate bed and the lymph nodes.

- Allen

Post Edited (Tall Allen) : 12/21/2013 1:13:08 AM (GMT-7)

Posted 12/21/2013 3:51 PM (GMT 0)
That is a good question, unfortunately we feel that since the cancer has spread there is no way of knowing exactly where the cancer is, it would be guess work...
I did talk to the rad onc, and he did not seem very hopeful with my case, but
they did leave it up to me and I decided not to do it because I don't want anymore additional negative side effects.... so... yea that's about it..

thanks
jack
Posted 12/21/2013 4:58 PM (GMT 0)
I'd say nixing the Rad tx was wise given the post op pathology. I have always thought lymph node invasion was systemic, which means it out beyond the pelvic area. Understand lymph node rad could stop it, but a big could. You really need a some time with a top notch Urological oncologist. I understand the limitations of Kaiser, is Affordable care act available to get better insurance. I gotta believe that the limits of Kaiser " care" has not been reached, but will take some proactivity on your part. I will not beat a dead horse with a stick ,ala, Neitzche, but you need to take a step out ,in faith and keep moving and thinking to the end point of your faith. The universe has a way of opening up to those that do. Actually you have taken that step already, by sharing with us. Stay on the road. I could give you so many examples of this truth, not fact, Truth, in my life, but this is about you and can only be received,by you. What else have you got to do?? Buck up Jack, you will be ok. Somethings moving!!
Posted 12/21/2013 4:58 PM (GMT 0)
I don't know if you have been following sonny's thread -- www.healingwell.com/community/default.aspx?f=35&m=2940721 -- but he was looking to do radiation in a similar situation using more advanced scans to get more accurate targeting for the radiation.

It didn't work out for him but it does show how one might go about it. Not sure how it would play with your kaiser insurance but it wouldn't hurt to look into doing something similar.
Posted 12/21/2013 7:10 PM (GMT 0)
It is a gamble, and the odds are not that good, so I decided not to do any more damage to my body function. it's kind of a drag because when they sell you on the surgery, they always tell you " You will have radiation to go to if surgery does not work " then after my surgery they told me " well we are sorry but the cancer is spread and could be through out your body by now "
well I always wondered what happened ? you told me we would have radiation if surgery did not work!
never trust a salesman!

jack
Posted 12/21/2013 11:40 PM (GMT 0)
They are not salesmen, and there are no warranties on body parts, or how any medical procedure will turn out. Doctors, PRACTICE medicine, Lawyers PRACTICE law. It amazes me, how so many imperfect beings, expect perfection from others, but not themselves. Not pointing at just you Jaxum, but you do have a dash of bitters in that drink. Thats becoming a bit old fashion in this new paradigm ,thankfully. Again, wish you well…...
Posted 12/22/2013 8:24 AM (GMT 0)
Jaxum,

A lot depends on where the cancer is. If it is still localized to the prostate bed and pelvic lymph nodes, why can't you go for the cure by irradiating them? If it is spread far afield, palliative ADT is your best bet. It doesn't sound like you've had the kinds of imaging studies that might determine that. Did anyone tell you that you had multiple enlarged lymph nodes outside of the pelvic area? Perhaps you can ask for a second opinion. I think Kaiser might be able to give you a NaF18PET/CT scan. If you can afford it, you can pay for a C11 Acetate PET/CT scan at UCLA - I think Sonny said it cost $2,500.
Posted 12/22/2013 1:08 PM (GMT 0)
Jack,

I would use all tools in the tool box and radiation is one of them.

Dave
Posted 12/22/2013 3:50 PM (GMT 0)
Yes I had two scans, PT scan bone scan, one of the scans did show the enlarged lymph nodes
the scan showed some lymph nodes 1.5 times normal size, that was done about two months ago

thanks
jack
Posted 12/22/2013 4:42 PM (GMT 0)
Were those enlarged lymph nodes in the pelvic region or elsewhere?
Posted 12/22/2013 6:43 PM (GMT 0)
Allan, exactly what I was wondering, I went on the premise they were not, in my advice. i do understand his reluctance in not doing the rad, in either case.i.e. SE's as he stated. Indeed "the dilemma", faced by all in the "what to do" aspect of this disease.
Posted 12/22/2013 11:34 PM (GMT 0)
yes as I remember it the enlarged lymph nodes were In the pelvic region.
but the way I was made to understand it, is that if the cancer has escaped the capsule it could be anywhere by now, so to me the odds don't seem very good for a cure and this feeling was also echoed by the rad onc and the urologist too, don't you think if they thought they could cure me they would strongly suggest the radiation?

one more day
thanks
jack
Posted 12/23/2013 12:15 AM (GMT 0)
Jack,

Prostate Cancer, not always, but typically, moves from the prostate capsule to the prostate bed to the pelvic lymph nodes to pelvic bones and then to visceral organs. There is a hope of catching it before it spreads away from the pelvic region.

If it has been found to have invaded only the prostate bed and pelvic nodes, it is called "locally advanced" or "locoregionally advanced." Sometimes they can get rid of it at this stage with external beam radiation.

If the cancer has spread to five or fewer sites (not a common phenomenon) it is called "oligometastatic" cancer, and has been cured by SBRT to the affected sites. They can only detect this with C11 Acetate PETs and a few similar advanced imaging techniques.

In either case, there is hope for a cure. It is possible the radiation oncologist you consulted with bases his prognosis on more than the information you supplied here. It is also possible that a second opinion from a urologic oncologist or other radiation oncologist who is more familiar with such techniques may lead you in a different direction.

I don't want to raise false hopes, and I am not a doctor, but I can tell you there have been cures in such cases, and doctors may disagree on a course of treatment. That is why it is always a good idea to get second opinions from doctors not associated with or recommended by the first doctor.

As I understand Kaiser's policy, you can get second opinions from doctors outside of the HMO. I think you can also get treatment outside the HMO if your doctors will agree to it and it is not a treatment Kaiser offers.

- Allen
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