quest from wife @ hormone refractory

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coffeemugs
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/24/2010 8:02 PM (GMT -6)   
Hi, I apologize for this lengthy post. I am new on here...has anyone who has had his prostate removed and been on Zolodex or Lupron injections had the medicine quit working? My husband has been on Zolodex for 10 yrs., never had radiation or chemo and his PSA has been slowly rising within months since his prostate had been removed. It is now 10. Is this called the stage of hormone refractory? The injections are not bringing his PSA down. It is rising between a half point to a point every 3 mths. I will get the rest of info on him next post so you have more detail. It was marginal and went outside the capsule. It went into the neck of the bladder and they removed as much as they could per Dr. report. His gleason score was 7 at time of surgery 3,4. He has always refused radiation. Thanks for your help.
Concerned wife. He is now 63.

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 2/24/2010 8:39 PM (GMT -6)   
Coffee,
I dont know the answer to your questions but glad you are here. A number of us on the forum are in IMRT at this stage, and most of us had surgery first. Hope you get some responses soon and keep us posted. Be blessed.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 2/24/2010 8:47 PM (GMT -6)   
Coffeemugs,
From what you have said it appears that your husband's PC has become refractory. I hope he is seeing an oncologist that specializes is prostate ca. At this point there are many other drugs that can be used. The Prostate Cancer Research Institute web site has a section on advanced PC and I know Dr Scholz and Dr Lam have free DVDs on the site that are presentations on hormone resistant PC.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/25/2010 8:24 AM (GMT -6)   
Use internet, books, forums like this and learn all you can, so you can know about your possible options on many drug therapies and some work fairly well on HRPCa (atleast for sometime frame)..you need to know about trade offs as to quality of life and what you might be subjected too. Check out www.hrpca@yahoogroups.com or such, these folks are dealing and sharing information on refractive patients in real time(globally), Howard Hansen is the moderator he currently has brain mets going on, knowledgable guy and mega PCa fighter...he was dx in 1993 and so 17 yrs. of battling PCa thus far and he has helped many get good and better information.

You need to be using a PCa oncologist in this scenario, hope you are not under a uro-doc as this realm is out of his league.
 
 
Best to you (seek and you shall find...) 

Post Edited (zufus) : 2/27/2010 10:28:43 AM (GMT-7)


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1100
   Posted 2/25/2010 5:13 PM (GMT -6)   
There are various so-called "second line" treatments that are used by oncologists, after LHRH agonists (Lupron and the like) fail. These include Casodex (though some oncologists reject Casodex monotherapy), Lukeine, LDK or HDK, estradiol, and others. It is pretty important to get to an oncologist who is very knowledgeable about prostate cancer (only a small minority of all oncologists) to determine whether your cancer is in fact hormone refractory and to figure out what to do about it. (The first issue - whether the cancer is hormone refractory -- is not trivial -- more than a few men have believed that their cancer was hormone refractory, only to find out that their LHRH agonist was not keeping their T levels at a castrate level, or that their DHT levels were high -- a problem that can be addressed with finasteride or dutasteride, etc.). Anyway, you should talk with a real expert. Best wishes,


Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 

Post Edited (medved) : 2/25/2010 6:53:06 PM (GMT-7)


coffeemugs
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/27/2010 11:29 AM (GMT -6)   
Hello Everyone who has answered my posting! I am sorry, I haven't figured out how to answer each of you individually yet. I am not that great on the computer, but will figure it out.

I truly appreciate all of you for your responses. It is very scary not understanding this whole situation with my hustband. I don't get to talk to the Dr. by myself, so have not had many questions answered. My husband does not like to talk about it with the Dr., brushes off any negative remarks that the Dr. tries to say, tells the Dr. his PSA is not high and that he refuses radiation. The Dr.'s have repeatedly tried to convince him to have radiation for the last 10 yrs. and still tries, but my husband says "no". So, now that it has reached PSA of 10, the Dr. agreed to put him on Casodex along with the Zolodex injections and wants to see him April 27th to see if it brings the PSA down.

The Dr.'s report from the VA medical records states that he believed the cancer had metastasized in 2004. It has doubled (PSA early on). I don't know what to expect, don't know how to ask questions without sounding horrible concerning what to expect of his life span, and just don't have anyone with knowledge to talk to. I have decided to contact his Dr. and talk to him on the side. I did find something on the internet that said if the PSA does not go down after 3 consecutive months while being on Zolodex that it is considered hormone refractory. I will talk to his Oncologist as soon as I can so I know what to expect and how to plan for the future. I realize that everyone's situations are and can be different as well as end results. We are Christians and talk about the situation between ourself bluntly and realistically. I just want to know the truth as to what is really happening so I will be prepared in every sense. My husband wants me to be financially and emotionally prepared for what may happen and I do too. Thank you all for the information you supplied on here. I will look everything up to better educate myself. I wish you all the best and will say a prayer for you as well. God Bless You all....thanks for all for sharing your experiences and knowledge.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/28/2010 12:22 PM (GMT -6)   
Go get a psa test somewhere else in between for comparison, is this drug protocol helping or not. There are cases of hrpca whereby casodex or other things might help it get worse, too. (just so know how wild PCa can get). Verify anything, talk and waiting are cheap. Alot of drug protocols are available, H. Hansen has been dealing with PCa as a warrior since 1993 and has had many major protocols done and is a great mentor to others on yahoo groups (hrpca@yahoogroups.com I think it is). Find a specialist onco-doc whom knows PCa especially might be your best results do well. I could list 40 drugs that are used in the war against PCa and some work well on certain patients and buy a good amount of time...interested? Seek and you can find this stuff on your own with efforts.  How much is the fight in the dog, it isn't the size of the dog in the fight, analogy for fighting this beast.


Youth is wasted on the Young-(W.C. Fields)


coffeemugs
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 2/28/2010 1:21 PM (GMT -6)   
Thanks Zufus, :) He has had a PSA from an outside source and it was close to the same number. The Zolodex does not work and has not for many months and still my husband refuses to get off of it, even after the Dr. told him it was not doing any good. He says, "if I didn't take the Zolodex, it would probably be worse". He tried the Casodex by itself for about a month or two about a year ago and did not like how he felt on it and the side affects. So, he had the Dr. take him off of it, put him back on the Zolodex and now has come to the point where his PSA is rising steadily with every check up. Now, he is asking to be put on Casodex with the Zolodex and the Dr. said o.k., since he will not take radiation or chemotherapy. He is very stubborn on this and will not budge. The oncologist says he will send the Casodex in the mail and check his PSA on April 27th and that is all he can do since my husband is not willing to take radiation or chemo. I will keep researching and show him what I find. Although, what I have read is that if you don't get the radiation within the first 2 yrs., the radiation will probably not help. He is comlaining of more back pain now and is looking very pale. It looks as though he has aged tremendously in the last year..more than usual. Thanks for your input. I wish you the best with prayer.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 2/28/2010 8:01 PM (GMT -6)   
You are in a tough situation to be sure. Many times our spouses are put through a more difficult situation than we are.

If your husband is not going to follow a doctor's advice, then he is in great peril. No matter if you find the most qualified oncologist in the world, it sounds as tho your husband will only do what he believes is best.

Faith is a wonderful thing, and many men on this site are deeply committed to their faith. But it seems that sometimes God chooses to use doctors, medicine, and experiences of theirs to help us. When we refuse these things, we are really rejecting the object of our faith.

I wish you and your husband the best in the coming months. Your husband may be helped by a professional counselor. Sometimes depression exhibits itself in this manner. You may even cnsider spiritual counseling to help your husband understand that he may not be able to to this on his own.

I hope you feel welcome to participate on this forum, and speak freely. We will try to help all that we can.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


coffeemugs
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 3/4/2010 6:22 AM (GMT -6)   
Thank you Goodlife,

You are right, my husband is being stubborn and he may change his mind after his next April appt. His PSA is 10 and I was wondering if this number is high enough to do some kind of test to see "where" the cancer is in his body? The VA in Asheville, NC, where he goes says his PSA has to reach to around 10 before they could do a test to find it. He had a bone scan about 6 mths ago and they said it wasn't in his bones. Has not had a lymph node test since 10 years ago. He is now having problems with "flushing" feelings going up his neck into his head and light dizziness with it. He has an irregular heart beat which he has had for years, but now he is having these new symptoms and says it feels like he can't breathe well when it happens with the flushing in neck at times. I don't know if this is being caused by the prostate or is a separate heart problem. The VA has him scheduled to wear a heart wiring harness in about two weeks. With his PSA rising 1/2 a pt. to a point every 3 months a normal number or does that mean it is rising fast? I still have to talk to his oncologist privately. If it spread to his bones or lymph nodes, would he still have years of life left? And would the chemo help? I had heard the chemo and radiation won't help him now. Thanks for your kindness.

RT
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/4/2010 6:30 AM (GMT -6)   
You need more education, chemo with chemo-combo drugs can work to some degree in most cases..how long and how well is the real question and better yet is there better choices before that (I think yes). Get Dr. Strums book 'A Primer on Prostate Cancer'...you will be amazed at what you can learn and quickly.
Go to www.hrpca@yahoogroups.com  or www.hrpca.org and seek information and read about others battling refractive PCa and various protocols that others are using in conjuntion with some reknown PCa docs, you can learn things here that you cannot get on your own. More information type sites:  www.pcri.org   or  www.hormonerefractorypca.org   www.hypertext.org   www.paactusa.org 

I lead you to water....suggest you drink and seek information...so you know more about your choices and situation.

Post Edited (RT) : 3/4/2010 4:36:47 AM (GMT-7)


coffeemugs
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 3/4/2010 11:36 AM (GMT -6)   
Thanks RT.... I will do that. :)

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/4/2010 4:46 PM (GMT -6)   
We have a poster on here who had a 3200 PSA, I didn't know the readings could go that high. He has successfully fought PC and other issues for many years.

This isn't the time to give up. Not sure what your financial situation is, but a second opinion outside the VA would probably be a great thing to consider.

You have a lot of options before you.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 3/4/2010 8:09 PM (GMT -6)   
If you go to the site www.hrpca.org Howard has a lot of very good information.
Dx'd 2/11/05
PSA 271, bone mets, lymph node involvement
Gleason Score: 7
Been on Lupron since beginning
Was on Casodex, then HDK, the Nilandron
Finished 12 rounds of Taxotere on January 26th

Current (3-1-10)
PSA: 159
Treatment: Lupron, Zometa, HDK+HC
~~~~~~~~~~~~
Personal Blog:
prostatecancerat42.blogspot.com
Facebook Profile:
www.facebook.com/david.e.emerson


coffeemugs
New Member


Date Joined Feb 2010
Total Posts : 11
   Posted 3/5/2010 6:43 AM (GMT -6)   
Thank you David! I appreciate that!
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