first lupron injection mets to lymph

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JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 11/27/2017 11:32 AM (GMT -7)   
Hello All G9 bunch, first lupron shot Fri, 11/24. wondering how long before side effects may begin I realize everyone is different. but a week 2 weeks ? Also, when should the PSA go down. ? The PSA last wk, 12 wks Post op was 4.8 8 wks 4.5 is this significant ? I don t know what to compare it to after RP. I was looking for what other PSA s were post op and how soon the PSA should drop with Lupron Thanks for any and all support it really helps to know that you are nt in this game alone
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 901
   Posted 11/27/2017 3:25 PM (GMT -7)   
I think my SEs began about 10 to 14 days after the injection. Good luck!
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
10/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 5640
   Posted 11/28/2017 4:57 PM (GMT -7)   
Because of the way Lupron works, being a GNRH agonist, there is something like a week's delay before most of the side effects hit. It works by overstimulating the production of testosterone so that it shuts down. During the first few days testosterone levels actually go up and then, sometime around the second week, they crash. After two or three weeks he may start to notice things like loss of libido and hot flashes. Other side effects will show up gradually over the first few months.
63 Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012: 1&2 neg, 3 pos 1/14 6(3+3) 3-4% (2nd opn. 7(3+4)), 4 neg
DaVinci 6/14/12. "some" nerve sparing on left
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
24 mo ADT3 7/12 - 7/14
Adj IMRT 66.6 Gy 10/17/12-12/13/12
8/2012-3/2015: Incont., Trimix, VED, PSA<0.015.
AUS & IPP installed 3/5/2015
Forum Moderator - Not a medical professional

Fl Drifter
Regular Member


Date Joined May 2016
Total Posts : 294
   Posted 11/28/2017 5:58 PM (GMT -7)   
took me 4-6 weeks to get into the side effects...and by that time my PSA dropped from 10 to .4
67yr.-PSA 10(2016).. 12 Biops 7 of 12 cancer ...Gleason 7-T2c-neg. bone scan and neg iodine MRI - 3+3=6 50% 3+4=7 60% 4+3=7 20% 3+4=7 60% 3+4=7 50% 3+4=7 30% ( all in left apex) then 3+3=6 5% in right apex...Lupron (6mo) shot 6-16... Markers-45 fractions of IGRT,,,81 Gy...starting fractions Oct.2016...finished on Dec.20th ..1st PSA-.4(4-2017)2nd PSA .7(8-2017)

Skypilot56
Regular Member


Date Joined Mar 2017
Total Posts : 263
   Posted 11/29/2017 3:52 AM (GMT -7)   
Good Morning, it's been about a month and a half seems like the hot flashes have slowed down a bit but the fatigue is getting worse partly I think to not getting a good nights sleep up every couple of hours to got the bathroom and when I do sleep a couple of hrs and I'm awake. Just started having loose bowel movements the last couple of days so researching right now to see how many other people have experienced this.

Larry
Male 61 DX @ 60
Father had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo Clinic Mn
Path Report: Gleason 9, pt3b, Seminal vessels and one nerve removed, negative margins, 35 lymph nodes removed no cancer, Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 1st psa check 0.13
7-19-17 psa 0.12 MRI clear
10-11-17 psa 0.16
10-12-17 Lupron started

John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 901
   Posted 11/29/2017 7:10 AM (GMT -7)   
I had fatigue along with a slew of other SEs. Every hour I would wake up sweating - not getting a good night's sleep I think was a major contributor to my fatigue. My RO prescribed Effoxor (Venlafaxine) to moderate the sweats and after the dose was doubled, it worked very, very well.
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
10/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 11/29/2017 7:25 AM (GMT -7)   
thanks for the feedback. it has nt been a wk yet since the injection so far, he feels great and I wanted to be prepared. He is not interested in knowing much, it s just his way of coping to not be informed. I respect that but i like to be informed as much as i can so thankyou.
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7184
   Posted 11/29/2017 7:31 AM (GMT -7)   
about 4-6 weeks post HT shot for me.

Mel

RandyJoe
Regular Member


Date Joined Jan 2015
Total Posts : 279
   Posted 11/29/2017 11:56 AM (GMT -7)   
about 6 weeks after the first injections, Randy started feeling the SEs pretty regularly. It took Randy 8 months for his PSA to become undetectable on ADT.

Donna.
55 at dx PSA-7/'14: 26
Bx-8/14: 8 of 8 cores+(80-100%) GL7;
9/14-Bone/CT Neg.
10/22/14: RP
Post-Surg Path:GL9; LN+; margins+; SV+, L Bladder neck+
pT3bN1
PSA-7 wks post op-10.0; 11 wks post op-14.2;
ADT 1/15 to1/16
F18 PET/Chest CT/MRI-Neg. (3/15)
SRT complete 7/6/15
9/15 to 3/16 PSA <.05
PSA 6/10/16 .46; 7/8/16 1.0; 8/2/16 1.2; 8/26/16 1.7; 9/22/16 2.5
10/16- EMBARK
6/17-PSA<.05-meds stopped

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 11/29/2017 1:35 PM (GMT -7)   
good to know Thanks he may continue feeling good for a while
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2082
   Posted 11/29/2017 10:54 PM (GMT -7)   
Dear Jkorourke,
There are some really good past threads about the effects HT has on our men. My DH, like yours, did not want to research or talk much about what was happening to him from the HT. But from experience and accounts of others here, it may very well have the most impact on his life than any other tx he will undertake. If you do a search about HT, you will likely find the threads that will help explain. Some of the things that surprised me: the hot flashes at first were so intense that the bed sheets needed changed throughout the night, but soon diminished. You have heard of venlafaxin. That is also an antidepressant, which could help with the mood swings often associated with HT as well. Another thing to expect aside from loss of libido, atrophy of scrotum and penis and loss of pubic and chest hair.
Loss of muscle mass everywhere and weight gain elsewhere.
I'm posting this because you seem to want knowledge, as I did, and I wish someone would have prepared me so I could have been better prepared to help my DH through it.
Best wishes to you!
Beth

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 11/30/2017 8:11 AM (GMT -7)   
Thankyou Beth i ll look back again on the past threads i always get overwhelmed , distracted and then my head hurts I m sure you can relate i thrive on positivity but i d be lying if i did nt say i'm terrified of what will happen to him on this Lupron we ll get through it together somehow
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

Almost a 10
Veteran Member


Date Joined Mar 2014
Total Posts : 877
   Posted 11/30/2017 9:02 AM (GMT -7)   
I agree with Beth. The first Lupron. The hot flashes are severe at first but they eventually subside as the body gets accustomed to it. I still get them occasionally but not as frequently or as severe as before. I also find the when I near my next injection, the frequency and intensity increases. The loss of muscle mass is noticeable but loss of strength is also noticeable. Weight gain comes along with lowered testosterone so increasing activity helps.
11/13 psa 240
DX 10/2013 PSA 187.5
PSA HIST 07/11,3.31;3/10,1.87,3/06,.87
Biopsy 10/28/13; 11/12 cores positive gs 9 (4+5)
BNSCN 12/09/2013 2 hot spots in spine
ADT 12/17/2013 22mg lupr, 50 mg Cas
BN biopsy 01/09/2013 neg
RALP 2/19/14 NN,LVI,Path T3BNX,MX, pros size 4.2 X 4 X 3 cm, 31 grm.Post Op PSA 3/14 .6, 6/14<.1;9/8,;.6;12/8, 1.2;3/9/15 3.9;6/2/15 23
12/14 CT SCAN; 1/15 BNSC

mrs. george
Regular Member


Date Joined Jun 2015
Total Posts : 43
   Posted 11/30/2017 9:33 AM (GMT -7)   
Dear Jkorourke,
I am another wife of a gleason 9 and my DH has been on Lupron & Casodex for 2 1/2 years now. Like your guys, my husband doesn't want too much information, but like you & Beth, I wish I had known more when we started out. The guys who post here talk about the side effects of hormone deprivation therapy, but I think many of the wives try to hold back on discussing the reality of it so our guys won't feel any worse than they already feel, at least that's how it is for me. It may be hard to believe and it's a very big adjustment, but it does become the new normal. Best regards, Suzanne

PS Beth, good to hear from you. I think of you often.

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 11/30/2017 12:01 PM (GMT -7)   
Thanks for all the support and sharing it helps to be prepared PSA at 12 wks Post op was 4.8. I don't even know where the cancer is. Most likely lymph grateful for the clean bone scan. Blessings to all of you in this boat
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

john4803
New Member


Date Joined Sep 2017
Total Posts : 14
   Posted 12/2/2017 3:59 PM (GMT -7)   
jko, I have only been on L & C for 2 weeks, so probably not long enough, but only possible SE of going from constipation to loose stools. Some of this may be from RALP only 3 weeks ago?

From many threads, exercise is critical to counter act muscle and bone loss.

Hope his SEs are minimal?

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 12/5/2017 11:43 AM (GMT -7)   
Hi John , it s only been 1 1/2 wk since Lupron and no SE's so far what Ive read it can take a while though he has suffered so much with the RP had the catheter a month hopefully, he ll get lucky hopefully you will as well amazing how you can be going along your lives and then your whole world turns on a dime hard to process it all!
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

Redwing57
Veteran Member


Date Joined Apr 2013
Total Posts : 2306
   Posted 12/5/2017 6:06 PM (GMT -7)   
My first hot flash was a month after the injection. They became my regular companion, about every 2 hours day and night.

I agree with the interrupted sleep being part of the fatigue problem. After a year or so though, the fatigue was relentless, nearly debilitating. I couldn't drive for more than 45 minutes or so before I had to nap a bit. Very strange.

Many other symptoms, as we've discussed here often. Loss of sexual ability, accompanied by loss of interest. It became as interesting as loading the dishwasher or mowing the lawn.

After 3 years as part of my initial therapy, we stopped the ADT. My testosterone has recovered fully. It's actually a good deal higher than my baseline.
55@Dx 4/16/13
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)

Pre:
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31

Tx:
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex, ended 3/16

PSA <0.1 : 8/13 - 5/16;
steadying! - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17, 0.7-10/17

mordant
New Member


Date Joined Sep 2017
Total Posts : 3
   Posted 12/5/2017 11:29 PM (GMT -7)   
Sorry to hear about your husband's illness. I mentioned in an earlier post that my husband has been on Zoladex nearly a year and has been pretty much normal until his RP at nine months after ADT initiation.
We kept waiting for the weight gain, hot flashes, loss of libido etc. as his T along with his PSA dropped to 0.1, but the effects were surprisingly minimal. He is high risk so ADT was clearly the lesser of two evils.

Everyone responds differently and I guess he got lucky, but he was also diligent about running, doing a basic weight routine, and wolfing down the veggies. This article points out that many ADT side effects can be reduced by aerobics and resistance training:
"Exercise possesses the capacity to simultaneously target multiple ADT-associated toxicities with no additional toxicity and at comparably minimal cost."
European Eurology Volume 65, Issue 5, May 2014, Pages 873-874

Unfortunately my husband has had mysterious sometimes-crippling lower abdomen pain (groin muscle?) since his RP in mid-September and hasn't been able to run yet. Any advice out there?
DX Age 67 Nov. 2016, 8.2
BX 12 of 12, G7 (4+3)
Possible pelvic met
Zoladex Jan. 2017-present
Feb. 2017 Fl. Pet scan- hot spots in spine, neck, rib
Aug. 2017 PSA 1.62
RP Sept. 12, 2017
Pathology 3 cm tumor, 70%, SVI+, ECE+, PNI+, bladder neck, peripheral margins+, Upgrade to G8
PSA 1 Oct. 13, 2017 -0.14, Nov. 10, 2017-0.11

Zzarth
Regular Member


Date Joined Jul 2016
Total Posts : 149
   Posted 12/6/2017 12:00 AM (GMT -7)   
It took me about 4 weeks as well to start the hot flashes...

They got worse over the last few weeks... and I'm dealing with exhaustion too...

Hopefully it will go away over time.

Good luck on your journey!

Zzarth
Dx 44.
6/16/16: PSA=15.1
7/16: BX=G6, 1 core R-apex 4mm 30% of tissue, R-apex
8/16: Hopkins=G7 (3+4)
10/16: RP w Tewari, pT2c pN0, 1.8 cm, 3+4=7, 4 comp=20%
Frozen Section: Positive R-APEX posterior (focal) identified and treated
-EPE, -SVI, -M, -LVI, -PI
Decipher 0.45
1.4.17 0.00
4.15.17 0.00
8.17.17 0.05
8.25.17 0.07
9.22.17 0.08
10.5.17 0.09
10.9.17 Lupron 6 month
10.27.17 0.09

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 12/6/2017 9:49 AM (GMT -7)   
I appreciate the feedback so I know what might be coming wishing everyone the best and hope and pray for nondetectables
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

RobLee
Regular Member


Date Joined Apr 2017
Total Posts : 395
   Posted 12/6/2017 9:59 AM (GMT -7)   
JK - I've been on Lupron for eleven months now, third six month injection and PSA scheduled for next month. Initial effect was a surge in sexual energy, the "Lupron flare", which subsided in about ten days. I've read that some physicians elect to pre-treat with two weeks of Casodex to prevent the flare, but mine did not.

Hot flashes and the associated night sweats crept up on me over the next few weeks and by six weeks became intolerable. At three months I begged my RO for help but that fell on unsympathetic ears. He told me to hire a personal trainer.

Which leads me to say that most of what I've read in this thread is spot on, with exception of the mention of exercise being a cure all for the SE's of HT. With two of the most common SE's being muscle loss and lack of interest or enthusiasm for just about everything, how is someone who already feels weak and fatigued and uninterested in practically everything supposed to suddenly become a mesomorph? It usually just doesn't work that way. If your husband is already so inclined, then then he has that to his favor.

In addition to the very common hot flashes, I was hit pretty hard by extreme moodiness. This affected me at a time when my life was already an emotional roller coaster. My GP was also unsympathetic. Through my own research I discovered Venlafaxine and shopped for a physician willing to prescribe this fairly innocuous medication. In addition to John's statement above I can attest to the efficacy of Venlafaxine in alleviating the frequency, severity and intensity of both the hot flashes and mood swings caused by HT, I would say by about 50%.

Additional medical issues which rose over the past year found me taking a fairly high dose of Gabapentin daily, which has further reduced the incidence of nighttime flashes and sweats, albeit at the cost of additional daytime drowsiness and lethargy. Why the medical community chooses to keep these treatments a secret is beyond me.

My wife of 37 years is a BSN/RN and was a CRRN at a rehab facility for nearly forty years before our recent retirement. She says that she has had patients on much higher doses than those that I've found to be effective. These are not drugs of abuse, and it is unfortunate that I had to endure months and years of anguish before - through my own advocacy, I was able to prescribe my own cure. Aren't doctors supposed to learn about this in medical school?
2014-15: PSA's 9, 12, 20, 25... Neg DRE, Neg TRUS biopsy
6/16: MRI Fusion biopsy, Right Base, 2x40%+2x100% all G8 (4+4)
8/16: DaVinci RP, 6mm EPE, PNI, 25% G4, BL SVI, stage T3B N0M0
1/17: started 18 months Lupron ADT, PSA's ~.03
5/17: AMS800 AUS implanted, revised 5/30
39 tx RapidArc IMRT (70 Gy) Aug-Oct 2017
Remember, remember... MOVEMBER!

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 12/6/2017 10:34 AM (GMT -7)   
Venlafexine and Gabapentin are on the top of my list of med requests should these SE occur I will def make sure he gets them if needed this disease is a nitemare from day 1 I know everyone agrees! we ll just keep keepin on trying to keep it positive
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved

Everton
Regular Member


Date Joined Jun 2017
Total Posts : 34
   Posted 12/6/2017 4:50 PM (GMT -7)   
JkorourkeRN for husband said...
Venlafexine and Gabapentin are on the top of my list of med requests should these SE occur I will def make sure he gets them if needed this disease is a nitemare from day 1 I know everyone agrees! we ll just keep keepin on trying to keep it positive



My side effects started probably close to 4 weeks from the Lupron injection. The hot flashes where unreal some lasting 30 minutes. They where so bad i was ready to come off the lupron. I was put on Venlafexine 37.5 mg and worked my way up to 150 mg daily. The Venlafexine stopped working at about the 7 month mark and Gabapentin was introduced to me. I am now up to 900mg of the Gabapentin. I am still on the Venlafexine as well as i have no more hot flashes and did not want to screw up a good thing by coming off it.

I have noticed a loss of strength and lack energy. I am going to the gym twice a week to try and regain some strength. I do walk the dog for 30 minutes daily also.
Age 59 when DX
DX Nov 2016
PSA 350
Start Lupron every 3 months
Jan 4 PSA 10.3
Feb 4 PSA 0.60
Feb Testosterone 0.2
Nov scan shows Bone & Lung Mets
Dec radiation to hip
Jan Biopsy 12 samples all positive
Gleason 9 ( 5 + 4 )
Jan Start chemo 6 times 3 weeks apart, Apr 21 done
Docetaxel with Predisone
March start Zometa
April 4 Turp due to prostate collapsing around urethra

JkorourkeRN for husband
Regular Member


Date Joined Sep 2017
Total Posts : 36
   Posted 12/7/2017 9:32 AM (GMT -7)   
Everton thanks for your response im sorry for all your suffering with Lupron and hope the Gaba is helping my son takes it for anxiety and it has been the best medication he ever had now im guessing my husband will need it we ll see tomorrow it s the 2 wk mark and at least Im mentally prepared for what might be coming so Im not in total shock the whole thing braks my heart for everyone going through this stuff
Dx. 6/2017
GS 9 4 + 5
Davinci 8/23/17
L bladder neck pos
nodes L 4/5 Pos
Margins Pos
extensive perineural invasion nerves not spared
Bilat seminal vesicles involved
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