psa rising fast - anyone got any advice?

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Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 3/3/2010 1:29 PM (GMT -6)   
Hello all,
 
We are in a fair amount of shock after my husband's recent appt with his oncologist. His psa, which was 8.3 two months ago, has shot up to 12.5.
 
He has been told that he will need chemotherapy, probably after his next appt in two months time, but that this is the last resort and will be merely palliative. 
 
He outlned a bleak scenario whereby only 60 - 70% of patients receiving chemo see any improvement in psa levels and that this is a very temporary improvement anyway.
 
Is this really all that is left for my husband? We are in the UK so know treatment and approach differs from people in the States.
 
Any extra information would be really appreciated as we are struggling to deal with the seemingly futility of his situation
 
Thank you
 
Missy J
Age - 59
Dianosed - July 07
Gleason 8 (4+4)
PSA - 17.7
Bone Scan - August 07 revealed mets to spine, neck, rib, shoulder and pelvis
MRI - August 07 revealed seminal vesicle involvement
Treatment - Zolodex started on August 10th
First PSA  November 7th - 2.3
Second PSA February 7th - 1.1
Third PSA  May 5th 2008 - 0.8
Fourth PSA September 3rd - 1.7
As of 6th January 2009, PSA up to 2.1 Casodex now added to regime
6th October 2009, PSA up to 8.3
C.T scan booked for 19th October 2009 to establish whether cancer has spread to lymph nodes
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 3/3/2010 1:46 PM (GMT -6)   
MIssyj, I am so sorry to read your update. I can't offer any information, but want you to know you two will be in my prayers, as I am sure you will be in lots of others here.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 3/3/2010 2:18 PM (GMT -6)   
Sorry to hear the unhappy report. Though I am not a doctor, I have a couple of thoughts. First, has your husband had a testosterone (T) level test, and a dihydrotestosterone (DHT) level test? If not, you want to do that. You want to make sure the T is at a "castrate level". If it is not, then the Zoladex is not doing what it needs to do and before concluding that the cancer is androgen independant, you could try an alternative drug to lower T level. You want the T to be at castrate levels because the T "feeds" the cancer. T also gets converted to DHT, and DHT feeds the cancer even more than T. So you want the DHT levels low too. Depending on the DHT level, you could consider adding finasteride or dutasteride. Some oncologists will offer what is referred to as ADT3 -- a combination of an LHRH agonist (such as zoladex or lupron), an anti-androgen (such as Casodex), and either finasteride or dutasteride. There is relatively little good literature to support this combination, but there is some. And some medical oncologists with expertise in prostate cancer recommend it. There are also some so-called "second line" treatments that are sometimes used after the cancer stops responding to LHRH agonists and anti-androgens. These include ketoconazole (sometimes you will see LDK or HDK for low dose keto or high dose keto), DES, thalidomide, estradiol, and some others. Many docs do not know about these treatments. It is worthwhile to see a doctor, if you can, who has particular expertise with advanced prostate cancer, and who knows about these options. As for chemotherapy, though the "averages" are not super encouraging, some of the chemos (such as taxotere) have helped extend people's lives for quite some time. It worked for quite a while for my father, and he had very little side effects. My best wishes, Medved
Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


Piy
Regular Member


Date Joined Mar 2010
Total Posts : 145
   Posted 3/3/2010 3:31 PM (GMT -6)   

Missyj -  This is my first post to this forum.  I have been a lurker for quite a while and have been meaning to register and tell our story, (I'm the wife). Your post compelled me to register and reply.

I don't know all of the details of your husband's treatment so far but I can see from your signature that he was diagnosed with advanced pca.  I would think the most important thing would be to ensure your husband is seeing an Oncologist who specializes in Prostate Cancer.   There are a handlful of top-knotch pca oncologists here in the USA, not sure about UK.  My husband had a recurrence after his RRP in October '07 and we were referred by his surgeon to an oncologist in our city.  Although we were told that this Dr is very highly regarded, (and I have no doubt that he is good), he does NOT specialize in pca and his approach seemed to be pretty cookie-cutter:  hormone treatments, then chemo, then you die.  That was pretty much his message.  We decided to take a more proactive approach to treatment and my husband is now seeing one of the top pca oncologists in the country.  It is my understanding that some of these doctors have had some success with treating patients with advanced pca.  I know the list of doctors has been posted here before with contact information, but not sure by who.  Perhaps someone who knows will chime in.  But I do know that the following are some of the most highly regarded pca oncologists in the USA:

Dr. Stephen Strum

Dr. Charles "Snuffy" Myers

Dr. Robert Leibowitz

Dr. Mark Scholz

Perhaps there are some in the UK that you can consult with to determine additional treatment options.

Best of luck to you and your husband ... don't give up!!

Amy

 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 3/3/2010 4:46 PM (GMT -6)   
MissyJ,
I was sorry to read of your husbands increasing PSA. Don't be overly alarmed by the term palliative..........such care can go for many years. I don't have anything that can help with your questions but there are a couple of fellas here with a good knowledge of hormone refractory disease. I am sure they will come in with some valuable suggestions shortly. In the meantime there is a forum (address is below) whose members are mainly comprised of guys with the same problems as your husband. It might be worthwhile having a visit there as I am sure they will have more detailed knowledge of possible treatments. Additionally the Dr "Snuffy' Myers book "Beating Prostate Cancer:  Hormonal Therapy and Diet" is a valuable tool. I recently heard him speak in Australia and he is an expert in refractory disease.
This is the site:
www.hrpca.org
I hope you find the answers your seeking,
Bill


1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm

Post Edited (BillyMac) : 3/3/2010 3:55:23 PM (GMT-7)


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 3/3/2010 6:32 PM (GMT -6)   
MissyJ,

I do not have any medical advice to offer however, I do have advice on a source of knowledgable advice. There is website called prostatepointers.org that has several patient support groups. One is called P2P short for physician to patient. A well known PCa doctor offers advice on treatments. His name is Dr Strum and he is quite paassionate about good treatment of PCa. You will need to do a PCa digest and the more information you give him the more detailed his reply. I think the form is on the site. I have read his replies to people in similar circumstance as your husband and it seems there is always something useful.

Best of luck to you and your hubbie.
Regards,
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones 
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
 
 
 


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 3/4/2010 3:37 AM (GMT -6)   
Missy J

Not an easy situation for you both to be in.

I'm English, but don't live in the UK. (I'm across the North Sea in Holland)
You don't have to be too specific with your answer, but whereabouts in the UK are you? , as there are all sorts of places around the country that will surely be able to offer help and advice.

I am sure you will have done a lot of asking over the last couple of years

try looking at this thread of James C's:
www.healingwell.com/community/default.aspx?f=35&m=1368720

it lists where people are from and while there are only a handful of people in the UK they might be able to offer some help.

The only place I know a lot about and can suggest is the John Radcliffe Hospital in Oxford:

www.oxfordradcliffe.nhs.uk/forclinicians/referrals/cancer/palliative/palliative.aspx

Alfred

RT
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/4/2010 5:42 AM (GMT -6)   
Try 'coaching' by PCa onocologist via donation, will help anyone and anywhere. The PCa 'coaching'-Ref he is called gives you good information at a low cost via your donation...this is probably a good thing for you to try out.

www.pcref.org
Dr. Israel Barken (retired-consultation specialist-doing Coaching) also has a radio show on PCa and other things, too. Can get info from him

www.paactusa.org (has newsletter, alot of info on PCa new findings, treatments and more) low cost.
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