Coming off of HT

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don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/27/2010 8:38 AM (GMT -6)   
Gentlemen and Ladies,
 
I have been coming off of my last Lupron shot since about April. I seem to be having a harder time coming off than when I started. Mostly hot flashes and moodiness (unexplained anxiety). Energy level is returning and losing some of the weight. Just curious about this and what others have experienced.
 
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
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were 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
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 6/27/2010 12:26 PM (GMT -6)   
Apparently your physiology if having a change with testosterone getting back and maybe having a street fight with Lupron residuals??? (LOL) You should resume at some point to a 'normalish' state. Why was casodex dropped anyway?(or was it just used temporarily to prevent the 'flare issue'? ) What is your strategy going forward on this if someone else can ask??? Is there a point at which you resume or try on different drug therapy? Just curious and hope you do well throughout your fight on this.


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


IDguy55
Regular Member


Date Joined Mar 2010
Total Posts : 27
   Posted 6/27/2010 1:38 PM (GMT -6)   
I am experiencing the same symptoms. I had my last 3 month dose of Zoladex in February, and since my PSA was quite low when I was retested in May, I won't have another till The PSA rises again. I have had more hot flashes during the past few weeks than the previous 3 months. They do seem to be tapering off now.
Current Age 55, DX October 2005 PSA 50
Biopsy 11/15/2005 Gleason 4 + 3, High Grade PIN, Perineural Invasion, T2 NX MX Stage 2
Bone Scan Clear, CT Scan Negative
open RRP on 12/19/2005 Gleason changed to 3 + 4, Tumor estimated at 25% of prostate volume, Negative Margins,
Extensive Perineural Invasion, Lymph Nodes Clear, Catheter removed 1/3/2006 (holidays) Dry at night. moderate incontinence during the day.
1/25/2006 PSA .046, Moderate Incontinence
2/28/2006 PSA .027
6/22/2006 PSA .043 Just a little stress incontinence
9/08/2006 PSA .065
IMRT Start 10/12/2006 45 treatments 80 gy
1/4/2007 Almost Total Urinary Blockage, Cystoscopy performed, The next few days I had the Urinary tract of a teenager.
1/8/2007 Clogged up again, Catheter put back in. Removed myself (highly recommended) 7 days later No problems since with only occasional very mild stess incontinence since.
1/11/2007 PSA .03
7/26/2007 PSA .011
1/24/2008 PSA .027
5/22/2008 PSA .104
9/25/2008 PSA .383
2/17/2009 PSA 1.06
5/12/2009 PSA 1.5
8/25/2009 PSA 3.8 LHRH agonist (3 month Zoladex) started
11/24/2009 PSA .021
2/23/2010 PSA 0.99 another 3 month Zoladex
5/25/2010 PSA .016, T level 17


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/27/2010 1:52 PM (GMT -6)   

Yes, and I feel like I am the middle man in the street fight. :-) I continue to follow up at six month intervals with the rad doc. Next visit is September. The uro said come back in a year. Not sure I liked that approach. The urologist mentioned that we would most likely not do anything until the PSA got to around a 2. Still not sure I like that approach either.

The Casodex was only to prevent the flare. My prostate was  not that large to begin with but I was told that it would also shrink the tumor and make it easier to treat. I did a bit of research on the HT and looked at opinions on single, double and triple blockade. At the end of the day there did not seem to be an advantage to overall survival  for single vs double or triple. So, I went with the uro's recommendation of Lupron as a single agent.

I have had some brief conversations with the rad oncologist about chemo or other therapy going forward. He gave me a run down of the usual stuff that I see on the net. His office participates in trials and he asked if I was interested. I told him not just yet.

I am currently looking for a good medical oncologist to help me manage going forward. Have not found one yet so if you know a good one in the area around Boise, Idaho let me know. I am taking it on my own to get a PSA once a month since I had the little bump in June. My GP is not much help and seems rather dismayed by any discussion around PCa. Good news is the PSA seems to be level at around the .32 mark. In addition I have read that Proscar or Avodart offer some benefit as a maintenance drug after stopping the hormone but neither of my docs have mentioned this other than a brief conversation with the rad oncologist.  

If this all seems sort of drifty to you it is to me as well. I guess I thought there would be more direction from my current doctors and in general things are going OK. So, maybe no need to do anything now but I like to know my options.

Thanks for the well wishes.

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
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were 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
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 6/27/2010 2:30 PM (GMT -6)   
Don and ID, I wish both you men the best, as you come off the HT drugs. Have no experience, but living with a wife that's been having hot flashes for years, lol, and I know what that is like for her. I wish you well in the next part of your journeys.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/27/2010 3:49 PM (GMT -6)   

David, thanks for the well wishes. Your comments regarding your wife reminds me of a lady that I was keeping company with a few years back. She was having that wonderful change of life that all women have and I was constantly dismayed by the rapid personality changes. :-) Now, having experienced something akin to her experience, I have a great deal more sympathy and empathy for what she was going through. Thanks for your well wishes.

ID, thanks for the notes. I guess I thought the hot flashes would be tapering off with the elimination of the drug. While I was on the Lupron the hot flashes diminished a good bit after the second one. What has really surprised me is the anxiety as this did not show up until this past week.

Best to all,

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
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were 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
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 6/27/2010 6:40 PM (GMT -6)   
I was on ADT3 for two years which consisted of Casodex, Avodart, and Lupron. I had my last shot in March of 2009 and it was a 4 month shot. It literally took me till Jan of this year before I felt what I call normal. I resumed my running last summer but I was not very good now I am finally able to go some distance. My libido is just now getting back to normal and my body is responding as well. So to answer the question, for me it took nearly a year before the effects of HT wore off. I encourage you to get into some type of physical exercise so you can get the body moving. I am a believer in nourishing our bodies and minds with positive stuff.
Hey I ramble alot but I am glad you are off HT. I hope the future is bright. I personally plan on staying off HT until my PSA is above .5

peace to you
dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) 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 .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/27/2010 7:18 PM (GMT -6)   
Hi Dale,
 
Whew! I was sort of hoping it would be quicker but then what's the hurry? As you recommend I do keep up a regular exercise routine with weights and treadmill. Knee has had me off the treadmill for a few weeks though. I was into exercise before I was diagnosed and kept it up all through my treatment. Did slow down a little near the end of the radiation. I believe that is what has kept me feeling as well as I do. I just got a bit blind sided by the anxiety this week. I am in the middle of making a major decision to relocate southward to be nearer to family and that sort of set things off.
 
Dale, I sincerely hope that it is a long time before you need to consider returning to HT and I appreciate your comments current and past.
 
Best 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
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were 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
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 6/27/2010 7:37 PM (GMT -6)   
Best to you Don, myself would say prepare to dump the uro-doc he is more useless than helpful, going forward.
Youth is wasted on the Young-(W.C. Fields)


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/27/2010 9:27 PM (GMT -6)   
Hi Zufus,
 
I was thinking along those same lines. He and his practice have been very good to me in discounting the cost of my HT and radiation since I am uninsured. But I think that disease management would be better handled by a medical oncologist.
 
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
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were 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
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


IDguy55
Regular Member


Date Joined Mar 2010
Total Posts : 27
   Posted 6/27/2010 10:34 PM (GMT -6)   
Don, so you're in the Boise area? I live south of Burley and am currently being treated by a rad-onc at St. Lukes MSTI in Twin Falls. I'm also looking for a medical oncologist and am finding the closest may be at the Huntsman Center at the University of Utah in Salt Lake City. If you find a good one around Boise let me know. It would be a lot better to go to Boise as my son and also my sister live there. Not to mention the having to run the gauntlet of Utah drivers getting to SLC.

Edit: When I say medical oncologist I am looking for one who specializes in PCA.
Current Age 55, DX October 2005 PSA 50
Biopsy 11/15/2005 Gleason 4 + 3, High Grade PIN, Perineural Invasion, T2 NX MX Stage 2
Bone Scan Clear, CT Scan Negative
open RRP on 12/19/2005 Gleason changed to 3 + 4, Tumor estimated at 25% of prostate volume, Negative Margins,
Extensive Perineural Invasion, Lymph Nodes Clear, Catheter removed 1/3/2006 (holidays) Dry at night. moderate incontinence during the day.
1/25/2006 PSA .046, Moderate Incontinence
2/28/2006 PSA .027
6/22/2006 PSA .043 Just a little stress incontinence
9/08/2006 PSA .065
IMRT Start 10/12/2006 45 treatments 80 gy
1/4/2007 Almost Total Urinary Blockage, Cystoscopy performed, The next few days I had the Urinary tract of a teenager.
1/8/2007 Clogged up again, Catheter put back in. Removed myself (highly recommended) 7 days later No problems since with only occasional very mild stess incontinence since.
1/11/2007 PSA .03
7/26/2007 PSA .011
1/24/2008 PSA .027
5/22/2008 PSA .104
9/25/2008 PSA .383
2/17/2009 PSA 1.06
5/12/2009 PSA 1.5
8/25/2009 PSA 3.8 LHRH agonist (3 month Zoladex) started
11/24/2009 PSA .021
2/23/2010 PSA 0.99 another 3 month Zoladex
5/25/2010 PSA .016, T level 17


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/27/2010 11:54 PM (GMT -6)   
Hi ID,

I will certainly pass any name along. I am looking for one that has PCa as a focus as well but not much luck. I have heard some good things about MSTI in general. My rad onc here practices at St Al's and the private practice where I was treated. Good guy. If I find a good med onco I will let you know.

Best of luck to you.
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
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were 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
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/28/2010 1:57 AM (GMT -6)   
Hi Don,
The ride off of HT for me has been good. My last Lupron injection was in May last year and I stopped the Casodex in September. At first I was wondering when the world got better but by this last May when my T levels hit 230, I was feeling pretty spry and "manish" again. I still have a ways to go but we'll get there. No more hot flashes and no more HGTV (Woo-Hoo). The down side is me and my wife are fighting for the TV remote again...:-)

But I am feeling pretty good now, and I know you will too. Just as my good friend Mr. Dale has said let the time go and you will start to be feeling back to normal before you realize it. It does happen, thank God.

Peace brother...hang in there...

Tony
Disease:
Advanced Prostate Cancer at age 44 (I am 47 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
LARP ~ 2/17/2007 at the City of Hope near Los Angeles.
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.

Status:
"I beat up this disease and took its lunch money! I am in remission."
I am currently not being treated, but I do have regular oncology visits.
I am the president of an UsTOO chapter in Las Vegas

Blog : www.caringbridge.org/visit/tonycrispino


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 6/28/2010 6:57 AM (GMT -6)   

Hi Tony,

Thanks for the advice. I will temper my expectations. But I still like HGTV... should I be worried?

Thanks again for the encouragement. It means a lot to have all you guys as a resource to talk about this stuff. I do not talk about it much outside of this forum.

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
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were 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
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?

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