Frustrated and scared

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Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 1/8/2009 2:53 PM (GMT -6)   
Hi all,
 
My husband saw his consultant yesterday who told him his psa had gone up from 0.6 to 2.1.
 
A little history - his psa rose last September from 0.7 to 1.6, his consultant then decided to introduce Casodex to his Zolodex prescription. This lead to a fall to 0.6 with which we were all delighted
 
The consultant then advised cutting out the Casodex to see what happened. Yesterday, it became clear that Zolodex alone is not doing the trick (hope you're following all this :)
 
We really don't know what this means. How effective is the Casodex compared to just Zolodex? What comes next if the casodex doesn't keep the psa down?
 
Sorry to ask the unanswerable but the only response we got from the consultant was
 
"The cancer seems to be winning the battle"
 
We are feeling pretty low but would just like to know (if that's possible) what this means and what to expect
 
Thank you, Julia
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
 


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 1/8/2009 3:12 PM (GMT -6)   
"The cancer seems to be winning the battle"? Wow. Well, I would definitely say that the battle is far from over. Hopefully the Casodex will knock the PSA back down, but if not, there are still options. If you haven't already read Dr. Snuffy Meyer's book "Beating Prostate Cancer", I would recommend picking it up. The books has a number of patients that have done really well on HT for years and years. Your husband may need to try a triple blockade or another HT. I am sure you will be getting more responses soon, because we have quite a few people that have become experts on this topic. In the meantime, try to stay positive and keep the faith. All the best!
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 1/8/2009 8:01 PM (GMT -6)   
Miss Julia,

The book that DD mentions addresses metastatic disease that is hormone refractory. The drugs that Dr Myer's book mentions as second line therapy are as follows:
Ketoconazole, has some issues with it's use but don't most of them?
Diethylstilbestrol (DES), cardiovascular side effects that are manageable but do need to be considered.
Sandostatin, an anti growth hormone agent. Dr. M. sites a study where a similar drug and dexamethasone, a steroid, had a positive effect and side effects were low. Study was at the University of Athens.
Leukine, used to improve white blood cell count, according to Dr M. leukine was used 14 days out of every 28 and arrested or slowed the progression of the disease. An interesting side effect was that the protocol seemed to reverse intestinal damage due to radiation and reversed coronary artery disease.

I would suggest that you research these on the net and also ask your consultant about them and the proper use. If he is unwilling to investigate the use in your husband's case find another consultant who will.

Miss Julia, I sincerely hope that you and your husband are able to find further assistance.

Best of luck to you both.
Don
Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
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
PSA test on July 14, 08 after 8 weeks hormone .82
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.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 1/11/2009 1:31 PM (GMT -6)   

Hello,

Thank you both very much for your replies

I have looked on Amazon for the book you both recommend but they don't list it. Wondered if you knew where I might be able to get it (I am in the UK which makes things a bit tricky)

Speaking of being in the UK, I think a lot of the drugs and treatments used in the US haven't reached us yet. For instance, when I asked my husband's doctor if he should have his testosterone level checked to get an idea of how well the Zolodex was working (recommended by members on this board) he looked at me askance and then said 'well it can't do any harm'!

I will, however, Google the drugs mentioned so many thanks for the info

Cheers, Julia


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
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 1/11/2009 2:01 PM (GMT -6)   

Miss Julia,

Here is a link to Dr Myer's website. You can purchase the book direct.

Don

www.prostateforum.com

 


Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
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
PSA test on July 14, 08 after 8 weeks hormone .82
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.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/11/2009 2:05 PM (GMT -6)   
THanks for writing Missy J, I think you will find many wonderful people here willing to offer helpful thoughts and suggestions. I would like to write about the comment "it looks like the cancer is winning". That is enough to make anyone feel low. Listen close THE CANCER IS NOT WINNING. With a positive attitude, a knowlegible medical team, and you guys being educated as to the treatments available, I think you will find that you can outrun this monster for a long time. Personally I refuse to ever let cancer win. Consider switching consultants now. I do believe in frank honesty from my medical team but I want them to show me how TO LIVE WITH CANCER not die from it. Stay with us let us lift your spirits and get ready to tackle this head on. The battle is not lost we are just getting our weapons out.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/23/2009 2:35 PM (GMT -6)   
Hi Julia,
I hope things are well for you on your day! Happy birthday!

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 15, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/23/2009 5:46 PM (GMT -6)   
There is a PCa group at yahoo for hrpca patients, they deal with all kinds of drug therapies, that have various results and you can read about others using such. There are various second line drugs for PCa patients to look into, that can give new results for you. Includes chemo protocols and added agents with them and many other types.


Examples: Ketoconzole, DES, emcyt, estradiol patch is used in some other countries with decent results and Dr. Premoli (Argentina) has used this on many men without any dvt's or blood clotting issues, these men got results from the patches that will work even against hrpca to some degree, it also by passes going through your liver witch might be a plus for it...very well tolerated...very available here in the USA and basically low priced enough compared to casodex or lupron.

There are other drugs too, get the book A Primer on Prostate Cancer (Dr. Strum) and learn.


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/23/2009 6:08 PM (GMT -6)   
Dear Julia.

It seems clear from the numbers that your husband's cancer has developed a majority population of hormone insensitive cells. This is an understood issue, and the cancer only wins when the caregivers stop getting in front of it.

I really think you are now into the venue of clinical trials and I know there are over 700, the majority of which are focused on this particular manifestation of the disease.

I personally think the most promising are the vaccine realated ones.

Best to you both.

Scott
Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Tobmeister
Regular Member


Date Joined Jan 2009
Total Posts : 41
   Posted 1/23/2009 10:29 PM (GMT -6)   
julia, I dont see where you published biopsy results. Surely he has had biopsy.
Tom, age 51
Diagnosed 11/12/2008
PSA 2006 - 2.8, 2007 3.06, 2008 4.6 (remember the rate of increase is as important as the level), PSA free 8.7%
Gleason score 7 (4+3); 6 out of 19 cores sampled positive for cancer; perineural invasion present
Bone scan and CT scan both negative
Prostate mildly enlarged, DRE negative
DaVinci radical prostatectomy 12/30/2008 - Duke Medical Center - left side nerves spared
Scheduled for catheter removal 1/15/2009

"Pick a good doctor and say your prayers"

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