Some HT SE questions

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compiler
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Date Joined Nov 2009
Total Posts : 7270
   Posted 4/7/2011 9:58 PM (GMT -6)   
Just curious about these SE from HT (so far, it's just an academic question, but down the road...):
 
1) Can you describe the hot flashes SE. How long? How often? What do you do about them, if anything.
 
2) Someone mentioned the emotional SE (eg: weepy, mood swings, etc.). I teach. I have always been in control, emotionally, at my job (and elsewhere, generally). Are the emotional SE likely to undercut my job performance? Not sure if one can even answer that, but give it a shot. For those of you experiencing emotional SE, would you be able to work regularly?
 
Mel
PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (PSAf: 24%), PCA3 =75 .Biopsy 11/30/09. Gleason 4+3. Stage: T1C. Current Age: 64. Surgery: Dr. Menon @Ford Hospital, 1/26/10. Pathology Report: G 4+3. Nodes: Clear. PNI: yes. SVI: No. EPE: yes. Pos. Margin: Yes-- focal-- 1 spot .5mm. 100% continent by 3/10. ED- yes.. PSA on 3/10/10-: 0.01. PSA on 6/21/10--0.02. 9/21/10--0.06; 1/4/11-0.13,3/1/11--0.27

John T
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Date Joined Nov 2008
Total Posts : 4269
   Posted 4/7/2011 11:23 PM (GMT -6)   
Mel,
I think it differs from patient to patient and younger patients have more side effects than older patients.
The universal side effect is loss of libido. You can still get an errection, but have no desire. Hot flashes vary from severe to mild. Mine were about 2 or 3 times a day and lasted 4 or 5 minutes. There are a lot of meds you can take to alliviate them. Breast growth is also common, but can be controlled with Femera or a low dose radiation to the breast before they start to grow.
More serious side effects are bone loss and muscle loss and higher risk of heart disease, some doctors think the cardiac risk is due to weight gain and not the HT itself. A strict excercise program which includes weight training is strongly recommended.
Some patients experience depression and some don't. I never did, but was only on it for 9 months. To me HT was noticible, but very tolorable, and I would have had no problem doing two years if the effects stayed where they were. My 88 year old cousin has been on intermittant for 10 years and says he has no problems at all. Everyone is different and some have severe side effects. I think it is key to be treated by a knowledgable oncologist who is aware of all the tricks and meds to reduce the side effects. Getting a shot of Lupron from the local urologist every three months and being sent on your way is not the way to do HT.
I also had to take an echo cardiogram and a bone density scan before Scholz would do HT.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Purgatory
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Date Joined Oct 2008
Total Posts : 25393
   Posted 4/7/2011 11:29 PM (GMT -6)   
John, in the same vein of thought as Mel's, do you think the men's hot flashes are similar in nature to women in menopause? My wife has had a fit with them for more than 10 years now. Some days better than others. We can never agree on a temp in the house. I react to the actual temp, whether it really is hot or cold, but she reacts to the hot flashes.

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

BB_Fan
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Date Joined Jan 2010
Total Posts : 1011
   Posted 4/8/2011 5:42 AM (GMT -6)   
John, Mel's synopsis of HT SE.s seems right on mark. I did not experience any emotional swings. Hot flashes were very bothersome initially, about 7-8 a day with at least 2 that woke me up at night. They disapated over time and now I don't really have any that are noticable (9 months into HT). I had breast radiation to avoid the male boob issue, and take vit D and viville patch to maintain bone desity. Both are not an issue for me. I have gained 10 lbs, but my cardiac health is good as well as blood suger. I get tested every 3 months. I have body hair loss, shriveling of equipment, an no sexual desire of course. Really the biggest issue for me is muscle loss. Exercise, weight training is very important, and I negleted it due to work demands. That's my HT story. Oh! I almost forgot the biggest effect, a string of undetectable PSA's (but hopefully that's from the SRT). BB
Dx PCa Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4) - 8 cores, 4 positive, 30% of all 4 cores.
Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%, nerves spared, no negitive side effects of surgery.
PSA's < .01, .01, .07, .28, .50. HT 5/10. IMRT 9/10.
PSA's post HT .01, < .01

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 4/8/2011 5:45 AM (GMT -6)   
This is an area I have no experience in good luck to you in however you go about it.

Post Edited (zufus) : 4/8/2011 4:51:49 AM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/8/2011 8:41 AM (GMT -6)   
BB,

While you say you are doing well with HT, your listing of side effects and how you are trying to counter them scares the daylights out of me. That's a lot of side effects, doesn't sound mild to me. I admire you for dealing with all of that.

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 4/8/2011 10:22 AM (GMT -6)   
Dave, everyone has there own level of tolerance. I put up with the HT SE's because I can reasonably live with them (my wife and I are very much looking forward to this summer when I will be off HT). I do this because the likelihood that my PCa is systematic is high and my pay-off would be a remission for a number of years. It's a roll of the dice I know, but to me worth the gamble.

You have been terribly effected by past treatments that have ultimately failed. I understand your reluctence to take this next step. BB
Dx PCa Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4) - 8 cores, 4 positive, 30% of all 4 cores.
Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%, nerves spared, no negitive side effects of surgery.
PSA's < .01, .01, .07, .28, .50. HT 5/10. IMRT 9/10.
PSA's post HT .01, < .01

JNF
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Date Joined Dec 2010
Total Posts : 3887
   Posted 4/8/2011 10:43 AM (GMT -6)   
I just had my second six month shot of Eligard yesterday and am also on daily Jalyn. Most noticeable se have been the hot flashes. They have been more frequent but for less time than John T reported. They used to come on only in the day and were sudden. Now they creep up on me, which is better, but also are more at night, which is worse. I find that when I limit caffene and exercise more, they are less noticeable. My doc gave me a rx that I will try and I am likely to try some alternative therapy.

I have diminished libido, but it is not gone, thankfully, and the ADT hasn't diminished ability. I have't had bone problems or loss of muscle mass that I can tell. I initially lost 15 pounds in anticipation of weight gain, gained 12 back, and have lost 5 over the last three weeks. So I am less than I was and would like to lose another 10. My boobs haven't changed.

I have had no change in mood or psychological outlook...no depression or weepiness that is sometimes reported. As everyone is different, my brother's brother in law was on Lupron and got so depressed that he could hardy function. The drugs used to counteract were also problematic and, while they helped, had to be managed carefully. Now his psa is rising and he will go back on ADT.

My se have been minor enough that I could manage this for a long while so long as they didn't get worse. Though I certainly want off of ADT, the reality is that I will probably be on for another year.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard shot and daily Jalyn started on 10-7-2010.
IMRT to prostate and lymph nodes 25 fractions started on 11-8-2010, HDR Brachytherapy 12-6 and 13-2010.
PSA <.1 and T 23 on 2-3-2011.

F8
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Date Joined Feb 2010
Total Posts : 3994
   Posted 4/8/2011 12:00 PM (GMT -6)   
loss of libido is a given but hot flashes is the main complaint.  i had (have) a lot of side effects from my treatment but i also had the triple whammy (HT+BT+IGRT) going at the end so i can't really say what did what.
 
should you go the HT route, i think you are a good candidate for anti-depressants which will help with hot flashes, depression and anxiety.
 
ed
 
 
age: 56
PSA on 12/09: 6.8
gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10
2/8/11 PSA <.1, T= 6 ng/dl

Old Sailor
Regular Member


Date Joined Aug 2009
Total Posts : 209
   Posted 4/8/2011 12:45 PM (GMT -6)   

Mel, as we're told, everyone reacts differently to HT.  In my case the only physical SE has been the hot flushes which I now control with effenox.  My worst SE is mental.  I knew that when I  started down the HT path, my pca was no longer curable but controlable and palliative.  The experts say that almost all men on HT will, at some time, become refractory and then its chemo etc.  The question on my mind is, will the HT work for one year, two years or 10 years.  Since I am older (69) I say to myself that if I get 8 years out of the HT, I will be in mid 70s and will have lived a good life - my Mayo doc says I may not say that when I hit 75.  This uncertainty with HT is difficult to deal with so I have to keep hoping that I will be one of those who will have success with HT for 10+ years (which is not uncommon.) Also, I am hoping that I will be able to go on intermittent ADT which many of the brothers (and now the experts) say is the way to go. 

I still think you may conquer the beast with your SRT because you had a positive margin which the experts say gives a better chance of successful SRT.

Take care and try to keep a positive attitude.   The Old Sailor 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/8/2011 4:05 PM (GMT -6)   
sailor,

i was told the same thing about my one tiny positive margin too, in my case, didnt stop the cancer from roaring back 9 months after my SRT ended. we can only hope the best for Mel, and others following his footprints.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 4/8/2011 5:47 PM (GMT -6)   
Interesting responses. It is clear to me that there is 100% probability that I would have at least a couple of SE, ranging from mild to severe.
 
Old Sailor: The worry about when HT will fail seems to me no different than any of us awaiting our next PSA test (other than the fact that you can be assured that at some time it will fail). It's the same fear awaiting those results.
 
I guess one big fear I have is this: I'm teaching a class, somebody asks a math question, and all of a sudden I am overcome with emotion and start to cry. In other words, a sudden, unexpected meltdown. I remember a colleague who had a disease and was treated with very high dose prednisone. That happened to her but she was able to leave the room on some pretense so the kids didn't see it. But that would be scary knowing that could (or is likely to) happen. I guess brain fog is another concern. I am very knowledgeable in my area and the idea of suddenly not knowing my subject or being unable to answer routine questions is scary.
 
Mel

zufus
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Date Joined Dec 2008
Total Posts : 3149
   Posted 4/9/2011 6:52 AM (GMT -6)   
Mel there are drugs for PCa that don't rob memory loss (also bone density) or necessarily have all those side effects, but nobody is usually interested in hearing much about them and docs don't make money off them, too (coincidence?). You are right in knowing what is facing you with typical HT therapies...it can and will influence your life and even your work. Dr. Fred Lee is still practicing medicine at age 82+ right now, he failed PCa cure about 26+ years ago...his HT didn't stop him...of course he went with way different drug and no Lupron's. Just think how great his brain, bones and body, would be with that many years on Lupron or even 10 yrs. of it???  If someone responds with they did 10 yrs. on it straight(no problem-your choices)...let's see the Dexa scan evidence on your bones...you would be surprized at the losses.  You can have bone fractures, even.

Post Edited (zufus) : 4/9/2011 5:57:52 AM (GMT-6)

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