Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

lupron

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
cyrus1
New Member
Joined : Dec 2010
Posts : 17
Posted 12/31/2010 6:45 PM (GMT -7)
I have done 4 months of lupron and am hating life. 63 years old, gleason 8, psa 20, 39 treatments of radiation with 5 to go. bone scan clean so far. Wznt to do as little lupron as posible without making critical mistake. I have 11 year old twins that are my primary concern. Anyone with thoughts on 6 or 8 months of lupron verses the 2 years recomended by drs. I would like a break or vacation from this. Thanks Cyrus3
profile picture
F8
Veteran Member
Joined : Feb 2010
Posts : 5230
Posted 12/31/2010 7:22 PM (GMT -7)
cyrus -- i'm about six weeks past nine months of lupron and i'm finally starting to feel better tho hot flashes now are the worst that they have been.  i hear you man.  nothing nice about lupron...except it could save your life. with your numbers and your age i would do everything possible to stick it out.

good luck, and i wish you the very best in the new year!

ed

profile picture
NCOBJIM
Regular Member
Joined : Dec 2010
Posts : 35
Posted 12/31/2010 7:32 PM (GMT -7)
RP in 2006 after 4.8 PSA. Finished 38 IMRT Radiation treatments in Set. 09. Will finish 6 months HT in Jan. 2011. Cannot really complain a whole lot about the HT. Some bad sleeping problems & the hot flashes but other than that have made it thru ok. PSA 5 weeks after RT was 0.02.
Will have another PSA in March 2011. Got to keep the good thoughts going.
profile picture
Cajun Jeff
Veteran Member
Joined : Mar 2009
Posts : 4154
Posted 12/31/2010 8:10 PM (GMT -7)
cyrus, Hang in there buddy I know it is tuff but you siad it best. "I have 11 year old tiwns" You can do this buddy...we know it is not nice but your fighting for the right reason.

Happy New Year my friend.

Cajun jeff

Post Edited (corvetteman3) : 1/1/2011 8:28:11 AM (GMT-7)

profile picture
kbota
Regular Member
Joined : Aug 2010
Posts : 489
Posted 12/31/2010 8:24 PM (GMT -7)
Cyrus, I know it's tough, but we've all been through worse in this life. You can handle two years. I will be getting my second shot of lupron in February. There have been two noticeable effects so far; libido has taken a nose dive, and sometimes the hot flashes are distracting and uncomfortable. They seem to be at their worst at night. There is no good time for them, but they seem to be tougher to cope with when in bed.

If you want, you are welcome to post the most difficult side effects. There are probably guys on here who have already been through what you are dealing with. They may have some insight that will help you.

Good luck, and please keep talking to us. We're here for you.

k
profile picture
zufus
Veteran Member
Joined : Dec 2008
Posts : 3149
Posted 1/1/2011 6:45 AM (GMT -7)
There are other choices you actually have or other drugs to help with those side effects. Lupron is the gold standard...for profits (LOL) as the usual suspected protocol. Another guy from this forum has a heavy duty case of PCa....he is using casodex (or generic version) and an old school drug that is like proscar and having lesser effects and excellent control for over a year now, using this.(fyi casodex use you might even have a sex life using it). Lupron or other drugs do not come with any guarantees, usually found useful for some kind of duration and it varies plenty, just like PCa's in general.

Some can discuss the virtues of using Lupron or other LHRH drugs, there are other choices and the effects do vary or can be alot less. The docs usually won't endorse estrogenic drugs(no money to made on it and no patents on it), some do and they have less side effects and taking say 1/2 mg. of DES (plus aspirin or coumadin) even along with Lupron will cancel most of the side effects of Lupron and lower your psa likely further (go figure...I did so for a little while and know so...no book theories). The are even other drugs, usually used after Lupron but don't have to be that way. But they will have you on this for two years and then maybe a vacation from it, then if and when psa rises you might have to consider what your future protocols might be or back on Lupron until it is no longer useful. Might as well visit www.hrpca.org   for list of 'Proven Treatments' to get a heads up on the drugs used against PCa...there are even some not listed there. Best to you going forward. You may find that the 'experts' are less than what you might have imagined them being, you should be seeing an oncologist when found with a non-cured status, they monitor more variables and know more about the vast archives of drugs and useages.
profile picture
Geebra
Regular Member
Joined : May 2009
Posts : 476
Posted 1/1/2011 8:03 AM (GMT -7)
I can certainly relate. I had been on Lupron for over a year. My Radiation doc wanted me to continue for two more years. My medical onc took me off it. She is concerned that with a long Lupron usage the cancer may grow resistant to HT. Her approach is to wait and see. If PSA will start rising again, she would put me on Casodex intermitent treatment. I hope I won't need to find out how effective this would be.

The side effects of HT are many. My most bothersome one is hot flushes. I hated my life in the first few months. After a while you just stop noticing it. It is still there, but you learn to tune it out.

Best of luck coping with HT. Don't let it bring you down. There are a lot of wounderful things in life. Your twins for instance.
profile picture
cyrus1
New Member
Joined : Dec 2010
Posts : 17
Posted 1/1/2011 9:02 AM (GMT -7)
Thanks for the feedback from my first posting,  I had agreed with my oncologist to do a minimum of 4 thirty day lupron injection along with 44 courses of radiation.  Have heard various opinions on outcomes of intermitent ht verses 2 or 3 years. Side effects have me half crazy and have to decide next week when radiation terminates if and how munch longer to do ht. They tell me i am looking at a 10per cent advantage by doing the 2 years. T level went from 735 to 10.  Night sweats every hour keeping me up along with urinary issues.  Lidido gone,  viagra just stopped working and i dont feel like myself.  Is all this worth it now for the odds of sucess or is there a balance.  My girl friend is trying to get it but i have to say it is getting uncomfortable. Feedback is helpful to me, thanks  cyrus1
profile picture
Fairwind
Veteran Member
Joined : Jul 2010
Posts : 4107
Posted 1/1/2011 7:42 PM (GMT -7)
My "T" was only 380 so it was not that far a drop for me..Night sweats, yes..My wife says a Chinese herb called Dong Quai worked good for her (for hot flashes and sweats)..I'll try some and report back on the results..Yeah, 2 years on HT is a long time..Some recent studies suggest one year might be enough..Why play all your HT trump cards when you may need them later...There are too many different doctors giving too many different answers on this one..
profile picture
don826
Veteran Member
Joined : May 2008
Posts : 1010
Posted 1/2/2011 3:21 PM (GMT -7)
Hi Cyrus,

I am one year off from having completed two years on Lupron. Made it through the first year pretty easily but the second I had some weight gain and so far have not been able to get it off. Had all the usual side effects but most were bareable. Here are a couple of links to the Bolla Study which is what forms the basis for the two plus year ADT.

Best to you.

Don

http://www.nejm.org/doi/full/10.1056/NEJMoa0810095

http://www.prostate-cancer.org/education/highrisk/bolla.html

profile picture
F8
Veteran Member
Joined : Feb 2010
Posts : 5230
Posted 1/2/2011 4:01 PM (GMT -7)
>>I had some weight gain and so far have not been able to get it off<<

Don -- when did you get your last shot?

ed

 

profile picture
don826
Veteran Member
Joined : May 2008
Posts : 1010
Posted 1/2/2011 5:06 PM (GMT -7)
Ed,

I got my last shot in January of 2010. I have regained some body hair and libido although the equipment only works a little. But then I have not tried any medical remedies either since I do not have a significant other. The hot flashes are also gone and I feel pretty close to normal. I do need to get back into the gym on a more regualr basis but my contract work has interfered a bit as it requires a heavy travel schedule. Which is probably the biggest reason I can't get the weight off.

Don

profile picture
John T
Veteran Member
Joined : Nov 2008
Posts : 4315
Posted 1/2/2011 5:44 PM (GMT -7)
The following article has a lot of practical things you can do to reduce the side affects of HT.
http://www.prostate-cancer.org/pcricms/node/436

JT
profile picture
cyrus1
New Member
Joined : Dec 2010
Posts : 17
Posted 1/2/2011 6:20 PM (GMT -7)
Don thank you for info, have to make a decision and am trying to be as informed as posible.  happy new year cyrus1
profile picture
mycroft
Regular Member
Joined : Oct 2010
Posts : 54
Posted 1/2/2011 7:47 PM (GMT -7)
Cyrus:

It appears that your medic failed to brief you on side effects (SEs) of Lupron and the other such meds as Trelstar and Zoladex.

Is the medic a uro, or a real cancer specialist, a medical oncologist?

There are effective means of dealing with them, but unfortunately for patients, all too many medics either do not know or do not care about SEs.

Here are links to two excellent articles on the subject:

http://www.prostate-cancer.org/education/andind/Guess_TestosteroneSideEffects.html
or
http://tinyurl.com/2ymb8f

http://www.prostate-cancer.org/education/sidefx/Strum_ADS.html
or
http://tinyurl.com/g6fzp

Charles E. (Snuffy) Myers, MD, is a well-known and well-respected med onc. At risk of offending someone, I'll quote what he has had to say on the subject of SEs:

""The difference between a good medical oncologist and a lousy medical oncologist is, in my view, how hard they work to minimize the side effects of chemotherapy in their patients. In the community I have met those from whom I learn something every time, and talked to others who don't care, who just couldn't give a crap what happens" And this applies as well to uros, IMO.

Ol' Snuffy pulls no punches; I like that.
profile picture
mycroft
Regular Member
Joined : Oct 2010
Posts : 54
Posted 1/2/2011 7:57 PM (GMT -7)
Just a brief addendum to my earlier post:

I often see posts that refer to a patient being prescribed ADT (androgen deprivation therapy) for a certain time, a year, two, or so.

The true measure of success of ADT (sometimes miscalled "hormone therapy") is the PSA and testosterone levels.

While on tx, PSA should be =/< 0.05 ng/mL, and T should be <20 ng/dL, which are the "undetectable" levels.

Having maintained those levels for at least one year consideration can then be given to suspending ADT until it again rises to a preselected level.

The calendar should not control. Let's say the patient has been on ADT for two years and his PSA is 3.5 ng/mL. Should he stop simply because it's the second anniversary? Absolutely not!
profile picture
Doting Daughter
Veteran Member
Joined : Aug 2007
Posts : 1064
Posted 1/2/2011 8:01 PM (GMT -7)
Hi Cyrus! Sorry to hear about your difficulties with Lupron. As my signature indicates, my father was on Lupron for two years and I have to tell you, he complained every day and every shot he said would be his last. (He didn't have a complaint with either his RP or RT). However, he made it to two years and I am so proud of him. I know it was extremely difficult, and the side effects are very real. But his most current PSA was undetectable and I hope and pray it stays there, because I doubt he will ever go on it again. I guess my point is that as a daughter, I am SOO appreciative and proud of my father, as I know your girls will be so proud of you. I tried to communicate to him that the entire thing sucks. Cancer sucks. Treatments are not ideal, but hopefully they are saving your lives. Since my father's dx, I have had two children and he has been here for both and I am forever grateful. I hope his decision to do HT has increased the odds of him being around to watch them grow and for me to dote awhile longer. I know it is selfish. I can't help it--I love my dad. Hang in there and remember what you are fighting for!! All the best!

A Doting Daughter
profile picture
F8
Veteran Member
Joined : Feb 2010
Posts : 5230
Posted 1/2/2011 8:03 PM (GMT -7)
thanks Don.  i actually feel a very very slight return of libido but hot flashes are pretty frequent and interrupt my sleep every morning.  bloating is much better.  i now feel like i weigh 300 lbs. instead of 400 lbs. cool .

the best thing tho is i'm pursuing my interests again and overall i'm optimistic that 2011 will be much better than 2010.

ed

profile picture
mycroft
Regular Member
Joined : Oct 2010
Posts : 54
Posted 1/2/2011 8:06 PM (GMT -7)
Interesting.

In my quotation of Snuffy Myers, some censor changed what he really said to read, "crap."

Oh well.
profile picture
cyrus1
New Member
Joined : Dec 2010
Posts : 17
Posted 1/2/2011 8:12 PM (GMT -7)
Thxs mycroft My dr is a cancer radiation specialist at a urology center in denver. I am comfortable with him but its either initially i didnt realize how advanced my cancer was and/or im looking under every nook and cranny to recupurate my libido asap, have a healthy sex life with my girlfriend, and not die because of it. He wants to see me do 2 years of ht and im the one resisting. So, I need to make the right call with regard to quality of life now versus the danger of a short cycle of this. cyrus1
profile picture
mycroft
Regular Member
Joined : Oct 2010
Posts : 54
Posted 1/2/2011 8:28 PM (GMT -7)

don826 said...
Hi Cyrus,


I am one year off from having completed two years on Lupron. Made it through the first year pretty easily but the second I had some weight gain and so far have not been able to get it off. Had all the usual side effects but most were bareable. Here are a couple of links to the Bolla Study which is what forms the basis for the two plus year ADT.

***

I checked both links.

The link to the Prostate Cancer Research Institute's review of the Bolla paper has no reference to a two-year tx limit. It does refer to a three-year regimen for men with certain clinical characteristics. I recommend that patients read it for themselves.


The link to the New England Journal of Medicine article concludes, "The combination of radiotherapy plus 6 months of androgen suppression provides inferior survival as compared with radiotherapy plus 3 years of androgen suppression in the treatment of locally advanced prostate cancer."

.....and I still say, the PSA and T levels control, NOT the calendar.
profile picture
mycroft
Regular Member
Joined : Oct 2010
Posts : 54
Posted 1/2/2011 8:37 PM (GMT -7)

cyrus1 said...
My dr is a cancer radiation specialist at a urology center in denver. He wants to see me do 2 years of ht and im the one resisting. So, I need to make the right call with regard to quality of life now versus the danger of a short cycle of this. cyrus1

Cyrus: I suspect that the rad is unfamiliar with the endocrine tx of PCa, as he is not in compliance with the recommendations of people who are. See my previous posts and links. If you want further reliable information check out the Prostate Cancer Research Institute at www.prostate-cancer.org/pcricms/

Is the rad an oncologist or a urologist?
profile picture
Purgatory
Elite Member
Joined : Oct 2008
Posts : 25445
Posted 1/2/2011 8:52 PM (GMT -7)
The more I read these threads on and about HT, the more its cementing my mindset to never go that path. Seems like for every vote that says its not so bad, there are nine votes that talk about the terrible parts.

Quality of live over quantity of life is some each of us has to deal with at some point in our lives.

David in SC
profile picture
Sancarlos
Regular Member
Joined : Feb 2010
Posts : 242
Posted 1/2/2011 9:53 PM (GMT -7)

Purgatory said...
The more I read these threads on and about HT, the more its cementing my mindset to never go that path. Seems like for every vote that says its not so bad, there are nine votes that talk about the terrible parts.

Quality of live over quantity of life is some each of us has to deal with at some point in our lives.

David in SC

David,

That is certainly your right. On the other hand, while I had some initial problems with Lupron I would have to say that at this point, 1.5 years into the deal, that any side effects I originally experienced have entirely gone away. Those included some slight bone density loss, now not a problem since I am on Fosamax, and anemia, which may or may not have been caused by the Lupron. I had hot flashes, but don't have them any more. I have not had any weight gain, and while I do try to exercise several times a week it is relatively moderate this time of year because I don't like to bike in the cold weather. I don't do much of anything special in terms of diet and weigh now exactly what I did when I began HT.

The only lasting side effect is loss of libido but I consider that a relatively minor price to pay for what many studies clearly show will slow the progression of PCa. As for the loss of libido, yes I miss that, but frankly I believe that there is a lot more to my humanity and my value to my family than whether my penis gets hard.

I am not sure why you are on such a tear against HT but I am here to say that it ain't all you seem to have it cracked up to be.

If people on HT are dying from heart attacks because they are gaining weight I would suggest they suck it up and get off their lazy butts and do some exercise and watch what they put in their mouth.

Sancarlos
profile picture
James C.
Veteran Member
Joined : Aug 2007
Posts : 4464
Posted 1/3/2011 9:41 AM (GMT -7)
mycroft, no censoring done by moderators, that I can see. If we alter anything, it is always revealed at the bottom of the altered post as edited by moderator so and so. There's no way we can slip in and edit something without leaving evidence behind. It's possible the Forum software has begun altering things, I haven't heard of any changes. The normal for the software is to star out offending words, such as **** rather than the word being changed to crap. Maybe your original source has changed the word to make it more acceptable to software programs?
✚ New Topic ✚ Reply
12




HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.