Re: Lupron

[Guest guest]

There is an error in my post of yesterday.

> And also see this article on SEs:

Should have referenced this:

http://prostate-cancer.org/education/andind/Guess_TestosteroneSideEffects.html

as well as this:

http://prostate-cancer.org/education/sidefx/Strum_ADS.html

Regards,

Steve J

[Guest guest]

It seems that enlarged prostate has to be dealt with prior to the start of

any forms of radiation treatment, and Lupron or its cousins seems to be the

preferred way to shrink the prostate prior to treatment. I have also read

that the hormone blockade effect of Lupron enhances the effect of radiation

treatment.

Louis. . .

Re: Re: Lupron

Tom D

Thanks for the feedback. Was there a metric that defined what an enlarged

prostate is?

If you choose - what exactly were the side effects; how did they progress

over the 4 months and how impactful were they on your quality of life?

Thanks for reaching out - this is no fun. Tom

[Guest guest]

It seems that enlarged prostate has to be dealt with prior to the start of

any forms of radiation treatment, and Lupron or its cousins seems to be the

preferred way to shrink the prostate prior to treatment. I have also read

that the hormone blockade effect of Lupron enhances the effect of radiation

treatment.

Louis. . .

Re: Re: Lupron

Tom D

Thanks for the feedback. Was there a metric that defined what an enlarged

prostate is?

If you choose - what exactly were the side effects; how did they progress

over the 4 months and how impactful were they on your quality of life?

Thanks for reaching out - this is no fun. Tom

[Guest guest]

I'm about mid-way along in a seven week protocol of IMRT right now following a radical retropubic prostatecomey that was performed back in mid-November of last year. Prior to undergoing the IMRT, I asked my medical oncologist about the combined protocol of Lupron + Casodex and he suggested going on Zoladex + Casodex instead, which I began back at the end of March, a few weeks before the IMRT began. When I asked him what the differences were between Zoladex and Lupron, he said, and this is an exact quote, "It's like Coke vs. Pepsi." To date, I haven't observed any side effects at all from the Zoladex + Casodex regimen at all and the side effects of the IMRT are benign, particularly in comparison with the big hit of post-operative recuperation from the RRP. Tom Bruce Lundeen

wrote: My Lupron shot immediately reduced my PSA count to zero. Only had some hot flash's for side effects. b Lupron Doctor has just requested that I take a Lupron shot. Said it will take 3 months to work. What has the group experienced when it comes to side effects with this drug? How long do the side effects last after you have taken the shot?Tom

[Guest guest]

I'm about mid-way along in a seven week protocol of IMRT right now following a radical retropubic prostatecomey that was performed back in mid-November of last year. Prior to undergoing the IMRT, I asked my medical oncologist about the combined protocol of Lupron + Casodex and he suggested going on Zoladex + Casodex instead, which I began back at the end of March, a few weeks before the IMRT began. When I asked him what the differences were between Zoladex and Lupron, he said, and this is an exact quote, "It's like Coke vs. Pepsi." To date, I haven't observed any side effects at all from the Zoladex + Casodex regimen at all and the side effects of the IMRT are benign, particularly in comparison with the big hit of post-operative recuperation from the RRP. Tom Bruce Lundeen

wrote: My Lupron shot immediately reduced my PSA count to zero. Only had some hot flash's for side effects. b Lupron Doctor has just requested that I take a Lupron shot. Said it will take 3 months to work. What has the group experienced when it comes to side effects with this drug? How long do the side effects last after you have taken the shot?Tom

[Guest guest]

Re Lupron/Zolodex/other ADT side effects.

Gentlemen, this is chemical castration, and " experienced no side

effects " just does not cut it for me. That may leave a wrong

impression with some of our Newbies.

Steve J. said it best. Refer to his links. If anyone here has had a

Lupron or Zolodex shot and did not experience loss of libido, and all

the symptoms of ED, possibly along with some other symptoms such as

loss of muscle strength, weight gain, and serious hot flashes (laugh,

but when they wake you up at night several times it ain't fun), and

even perhaps mood swings, all I can say is WOW! Did they give you a

placebo?

To me those are indeed side effects, especially the main one, ED.

Fuller

> My Lupron shot immediately reduced my PSA count to

zero. Only had some hot flash's for side effects.

>

> b

> Lupron

>

>

> Doctor has just requested that I take a Lupron shot. Said it

will take

> 3 months to work. What has the group experienced when it comes to

side

> effects with this drug? How long do the side effects last after you

> have taken the shot?

>

> Tom

>

[Guest guest]

Fuller,

One thing you forgot to mention for our Newbies. Isn't it true the side effects from the ADT subside once you are off these drugs? My husband is experiencing all these side effects but he was told that 6 months to a year after coming off these the side effects would go away. Was I misinformed?

Sincerely,

Sheila

--------- Lupron> > > Doctor has just requested that I take a Lupron shot. Said it will take > 3 months to work. What has the group experienced when it comes to side > effects with this drug? How long do the side effects last after you > have taken the shot?> > Tom>

[Guest guest]

Fuller,

One thing you forgot to mention for our Newbies. Isn't it true the side effects from the ADT subside once you are off these drugs? My husband is experiencing all these side effects but he was told that 6 months to a year after coming off these the side effects would go away. Was I misinformed?

Sincerely,

Sheila

--------- Lupron> > > Doctor has just requested that I take a Lupron shot. Said it will take > 3 months to work. What has the group experienced when it comes to side > effects with this drug? How long do the side effects last after you > have taken the shot?> > Tom>

[Guest guest]

Zero hot flashes here, zero weight gain here, zero loss of muscle strength here and as I understand it, there's a big difference between being on this protocol for six months (which is what I'm going to be on it for) vs. being on it for two years, which is when the chemical castration stuff tends to become permanent. Having said that, however, I got my shot of Zoladex back on March 27th, and since I'm going to be on it for another four months, I guess we'll just have to wait and see what's in store on down the road. Not to mention the significantly increased risk of stroke, heart attack and other adverse health effects, which are meaningfully correlated with the longer, two-year protocol. At least that's what the docs say. Tom Fuller wrote: Re Lupron/Zolodex/other ADT side effects.Gentlemen, this is chemical castration, and "experienced no side effects" just does not cut it for me. That may leave a wrong impression with some of our Newbies.Steve J. said it best. Refer to his links. If anyone here has had a Lupron or Zolodex shot and did not experience loss of libido, and all the symptoms of ED, possibly along with some other symptoms such as loss of muscle strength, weight gain, and serious hot flashes (laugh, but when they wake you up at night several times it ain't fun), and

even perhaps mood swings, all I can say is WOW! Did they give you a placebo? To me those are indeed side effects, especially the main one, ED.Fuller> My Lupron shot immediately reduced my PSA count to zero. Only had some hot flash's for side effects.> > b> Lupron> > > Doctor has just requested that I take a Lupron shot. Said it will take > 3 months to work. What has the group experienced when it comes to side > effects with this drug? How

long do the side effects last after you > have taken the shot?> > Tom>

[Guest guest]

Zero hot flashes here, zero weight gain here, zero loss of muscle strength here and as I understand it, there's a big difference between being on this protocol for six months (which is what I'm going to be on it for) vs. being on it for two years, which is when the chemical castration stuff tends to become permanent. Having said that, however, I got my shot of Zoladex back on March 27th, and since I'm going to be on it for another four months, I guess we'll just have to wait and see what's in store on down the road. Not to mention the significantly increased risk of stroke, heart attack and other adverse health effects, which are meaningfully correlated with the longer, two-year protocol. At least that's what the docs say. Tom Fuller wrote: Re Lupron/Zolodex/other ADT side effects.Gentlemen, this is chemical castration, and "experienced no side effects" just does not cut it for me. That may leave a wrong impression with some of our Newbies.Steve J. said it best. Refer to his links. If anyone here has had a Lupron or Zolodex shot and did not experience loss of libido, and all the symptoms of ED, possibly along with some other symptoms such as loss of muscle strength, weight gain, and serious hot flashes (laugh, but when they wake you up at night several times it ain't fun), and

even perhaps mood swings, all I can say is WOW! Did they give you a placebo? To me those are indeed side effects, especially the main one, ED.Fuller> My Lupron shot immediately reduced my PSA count to zero. Only had some hot flash's for side effects.> > b> Lupron> > > Doctor has just requested that I take a Lupron shot. Said it will take > 3 months to work. What has the group experienced when it comes to side > effects with this drug? How

long do the side effects last after you > have taken the shot?> > Tom>

[Guest guest]

Tom, I talked with both my medical oncologist (at Duke University Hospital) as well as my radiation oncologist (at UNC Chapel Hill Hospital) independently about this and they both seemed to think that Zoladex vs. Lupron was a case of six of one or a half dozen of the other. The big difference is whether you go on the protocol for six months or two years. I'll be on it for six months. By the way, among all hospitals treating cancer in the U.S. Duke is ranked # 9 according to the folks at U.S. News & World Report, whose evaluations you can find here: http://health.usnews.com/usnews/health/best-hospitals/search.php?spec=ihqcanc & And if you cursor down through that list, you'll notice some hospitals that are mentioned

here frequently (M.D. , Massachusetts General, s Hopkins) along with some others that aren't even on the radar screen. I met with the chief of radiation oncology at Duke as well in making my mind up as to where to have the IMRT done, but liked my radiation oncologist at UNC Chapel Hill Hospital, on the other side of the hill, better. Tom play36@... wrote: TomThanks. That was very helpful. Why did he want you on the Zolodex? I think my guy wants to shrink the prostate for some reason.Tom**************Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

Tom, I talked with both my medical oncologist (at Duke University Hospital) as well as my radiation oncologist (at UNC Chapel Hill Hospital) independently about this and they both seemed to think that Zoladex vs. Lupron was a case of six of one or a half dozen of the other. The big difference is whether you go on the protocol for six months or two years. I'll be on it for six months. By the way, among all hospitals treating cancer in the U.S. Duke is ranked # 9 according to the folks at U.S. News & World Report, whose evaluations you can find here: http://health.usnews.com/usnews/health/best-hospitals/search.php?spec=ihqcanc & And if you cursor down through that list, you'll notice some hospitals that are mentioned

here frequently (M.D. , Massachusetts General, s Hopkins) along with some others that aren't even on the radar screen. I met with the chief of radiation oncology at Duke as well in making my mind up as to where to have the IMRT done, but liked my radiation oncologist at UNC Chapel Hill Hospital, on the other side of the hill, better. Tom play36@... wrote: TomThanks. That was very helpful. Why did he want you on the Zolodex? I think my guy wants to shrink the prostate for some reason.Tom**************Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.(http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

No Sheila, you were not misinformed. That is the norm. It took me

about six months to begin feeling the effects start to mitigate, and

I had a total of five months Lupron. Now, about sixteen months after

the administration of the last one-month shot (Jan 22, 2007), I would

say I am about 90 to 95% and still improving. They " go away " very

gradually.

Fuller

> > My Lupron shot immediately reduced my PSA count to

> zero. Only had some hot flash's for side effects.

> >

> > b

> > Lupron

> >

> >

> > Doctor has just requested that I take a Lupron shot. Said it

> will take

> > 3 months to work. What has the group experienced when it comes to

> side

> > effects with this drug? How long do the side effects last after

you

> > have taken the shot?

> >

> > Tom

> >

>

[Guest guest]

> Zero hot flashes here, zero weight gain here, zero loss of muscle

> strength here and as I understand it, there's a big difference between

> being on this protocol for six months (which is what I'm going to be on

> it for) vs. being on it for two years, which is when the chemical

> castration stuff tends to become permanent.

I suspect that Tom has been misinformed. I suggest that he refer to

this, on the website of the Prostate Cancer Research Institute:

http://www.prostate-cancer.org/education/andind/Strum_ListeningToBiology.html

Given that ADT is chemical castration aka orchiectomy, here's just one

sentence from the article: " If the physician assumes that orchiectomy

has resulted in a castrate testosterone (< 20ng/dl) and does not monitor

the serum testosterone, almost 40% of these patients face a significant

risk of disease progression. "

So what to do, what to do? Simple: have serum T (testosterone) tested.

After several weeks on ADT, T should be <20ng/dL. If it isn't, the ADT

is likely not succeeding. Remember, the purpose of the exercise is to

reduce T in order to " starve " the PCa cells. But it is not always

successful. Recourse might then be had to ketoconazole, with appropriate

monitoring.

Regards,

Steve J

[Guest guest]

Dear Fuller,

Thank you so much for your response. First this doctor wanted my husband on Zoladex for 3 years, we talked and got him down to two years, but the Mass. General doctor said one year and we want to find out why Dr. Zietman said one year. It really puzzled our present doctor, Dr. Shetty. I'll let you know how we make out. Thank you again for you time. I'll keep you in my thoughts and prayers for all your kindness and well-being.

Best Wishes,

Sheila

--------- Lupron> > > > > > Doctor has just requested that I take a Lupron shot. Said it > will take > > 3 months to work. What has the group experienced when it comes to > side > > effects with this drug? How long do the side effects last after you &g

t; > have taken the shot?> > > > Tom> >>

[Guest guest]

Well, the weight gain can be quantified, and is quantified each week when I see my radiation oncologist. Like I said, zero weight gain, though that's not really remarkable since guys who are physically active have a lower chance of fluid retention (and therefore weight gain) than those who are more sedentary. The hot flashes are subjective, and I haven't experienced any, so zero to report there. And insofar as the loss of muscle mass is concerned, I haven't noticed anything remarkable, but then, I'm not in an ironman competition either. Steve Jordan wrote: > Zero hot flashes here, zero weight gain here, zero loss of muscle > strength here and as I understand it, there's a big difference between > being on this protocol for six months (which is what I'm going to be on > it for) vs. being on it for two years, which is when the chemical > castration stuff tends to become permanent.I suspect that Tom has been misinformed. I suggest that he refer to this, on the website of the Prostate Cancer Research Institute: http://www.prostate-cancer.org/education/andind/Strum_ListeningToBiology.htmlGiven that ADT is chemical castration aka orchiectomy, here's just one sentence from the article: "If the physician assumes that orchiectomy has

resulted in a castrate testosterone (< 20ng/dl) and does not monitor the serum testosterone, almost 40% of these patients face a significant risk of disease progression."So what to do, what to do? Simple: have serum T (testosterone) tested. After several weeks on ADT, T should be <20ng/dL. If it isn't, the ADT is likely not succeeding. Remember, the purpose of the exercise is to reduce T in order to "starve" the PCa cells. But it is not always successful. Recourse might then be had to ketoconazole, with appropriate monitoring.Regards,Steve J

[Guest guest]

Tom - given what I know now vs then, I would have resisted the Lupron shot. My urologist did not specifically tie my Lupron to any prostate volume number that I recall. I do not believe my prostate was enlarged, based on my surgical pathology and my surgeon's (not my primary urologist) feedback that the shrinking potential was minimal and would not have negatively impacted my surgery.

As to side effects, I did experience occasional hot flashes - usually occurring at bedtime and lasting only 10-15 minutes at a time - overall, not that bad compared to others who have reported here. The Lupron also knocks your testosterone level way down - which is another reason for giving the shot - as the cancer 'feeds' on testosterone. The accompanying side effect was a significant diminishing of my libido and interest in sex prior to my surgery. Because my surgery occurred before the full 3-mo. dosage of Lupron had completed, the continued impact on my testosterone level delayed my post-op recovery of erectile function. Additionally, I experienced a noticeable growth in my breasts which has yet to fully subside 9 mos. post-op.

Let me know if I can provide any other info which you might find helpful.

Tom D.Stay informed, get connected and more with AOL on your phone.

[Guest guest]

Sheila,

The problems really begin to escalate if the time on ADT exceeds two years, according to what I have read. It may be worth while to find an oncologist that is willing to follow your husband's progress after one year on ADT using the "Active Surveillance" methodology of carefully monitoring PSA every four months or so, and other means.

Steve's link http://prostate-cancer.org/education/sidefx/Strum_ADS.html

The Androgen Deprivation SyndromeBy B. Strum, MD, Healing Touch OncologyReprinted from PCRI Insights January 1999, vol. 2, no. 1

has the folowing:

"For example, patients who are candidates for potentially curative local therapies, the duration of neo-adjuvant ADT rarely exceeds 1 year. Therefore, such patients suffer the typical acute ADS symptoms, but will not experience chronic ADS symptoms to any significant extent. However, acute ADS symptoms invariably compromise the lifestyles of healthy and active prostate cancer patients, and mandate that certain changes be made in the patients' diet, exercise and/or work habits during ADT.

Chronic ADS symptoms are much more prevalent in PC patients treated with ADT than is currently recognized, and some are nearly inevitable in patients treated longer than a year. For such patients, specific treatment strategies must be implemented to minimize or prevent the development of chronic ADS. Left untreated, chronic ADS is progressive with ongoing ADT and often lead to other medical complications."

[bold emphasis added]

This is probably why Dr. Zeitman of MGH said one year. He is a recognized authority on PCa, as is Dr. Strum. You have to recognize that there are various levels of competence in doctors. In most cases of this prostate cancer stuff we must become our own "patient advocate." We have to learn as much as possible so that we have the knowledge to question proposed treatments.

Good luck,

Fuller

>> Dear Fuller,> Thank you so much for your response. First this doctor wanted my husband on Zoladex for 3 years, we talked and got him down to two years, but the Mass. General doctor said one year and we want to find out why Dr. Zietman said one year. It really puzzled our present doctor, Dr. Shetty. I'll let you know how we make out. Thank you again for you time. I'll keep you in my thoughts and prayers for all your kindness and well-being.> Best Wishes,> Sheila > >

[Guest guest]

PMFJI --

My _guess_ is that the logic is as follows:

To kill the cancer cells, you must give each cell a substantial

radiation dose. That dose is _per cell_ -- on a larger scale, it's a

certain radiation dose _per ml of prostate volume_.

The smaller the volume that needs to be irradiated, the less the

_total_ (whole-body) dose that needs to be delivered.

So the radiation oncologist wants the treated region (the whole

prostate) to be as small as possible, so he can reduce the _total_

radiation dose to the patient.

As I say, it's only conjecture.

>

> Tom

>

> Thanks. That was very helpful. Why did he want you on the Zolodex? I

think my

> guy wants to shrink the prostate for some reason.

>

> Tom

>

[Guest guest]

PMFJI --

My _guess_ is that the logic is as follows:

To kill the cancer cells, you must give each cell a substantial

radiation dose. That dose is _per cell_ -- on a larger scale, it's a

certain radiation dose _per ml of prostate volume_.

The smaller the volume that needs to be irradiated, the less the

_total_ (whole-body) dose that needs to be delivered.

So the radiation oncologist wants the treated region (the whole

prostate) to be as small as possible, so he can reduce the _total_

radiation dose to the patient.

As I say, it's only conjecture.

>

> Tom

>

> Thanks. That was very helpful. Why did he want you on the Zolodex? I

think my

> guy wants to shrink the prostate for some reason.

>

> Tom

>

[Guest guest]

Or it could be that by shrinking the size of the prostate, the likelihood of collateral damage to the rectum or bladder, both of which are within a few millimeters of the prostate, is minimized. Again, a good question to ask your doctor. cpcohen1945 wrote: PMFJI --My _guess_ is that the logic is as follows:To kill the cancer cells, you must give each cell a substantialradiation dose. That dose is _per cell_ -- on a

larger scale, it's acertain radiation dose _per ml of prostate volume_.The smaller the volume that needs to be irradiated, the less the_total_ (whole-body) dose that needs to be delivered.So the radiation oncologist wants the treated region (the wholeprostate) to be as small as possible, so he can reduce the _total_radiation dose to the patient.As I say, it's only conjecture.>> Tom> > Thanks. That was very helpful. Why did he want you on the Zolodex? Ithink my > guy wants to shrink the prostate for some reason.> > Tom>

[Guest guest]

Or it could be that by shrinking the size of the prostate, the likelihood of collateral damage to the rectum or bladder, both of which are within a few millimeters of the prostate, is minimized. Again, a good question to ask your doctor. cpcohen1945 wrote: PMFJI --My _guess_ is that the logic is as follows:To kill the cancer cells, you must give each cell a substantialradiation dose. That dose is _per cell_ -- on a

larger scale, it's acertain radiation dose _per ml of prostate volume_.The smaller the volume that needs to be irradiated, the less the_total_ (whole-body) dose that needs to be delivered.So the radiation oncologist wants the treated region (the wholeprostate) to be as small as possible, so he can reduce the _total_radiation dose to the patient.As I say, it's only conjecture.>> Tom> > Thanks. That was very helpful. Why did he want you on the Zolodex? Ithink my > guy wants to shrink the prostate for some reason.> > Tom>

[Guest guest]

Or it could be that by shrinking the size of the prostate, the likelihood of collateral damage to the rectum or bladder, both of which are within a few millimeters of the prostate, is minimized. Again, a good question to ask your doctor. cpcohen1945 wrote: PMFJI --My _guess_ is that the logic is as follows:To kill the cancer cells, you must give each cell a substantialradiation dose. That dose is _per cell_ -- on a

larger scale, it's acertain radiation dose _per ml of prostate volume_.The smaller the volume that needs to be irradiated, the less the_total_ (whole-body) dose that needs to be delivered.So the radiation oncologist wants the treated region (the wholeprostate) to be as small as possible, so he can reduce the _total_radiation dose to the patient.As I say, it's only conjecture.>> Tom> > Thanks. That was very helpful. Why did he want you on the Zolodex? Ithink my > guy wants to shrink the prostate for some reason.> > Tom>

[Guest guest]

Thanks . Was the Lupron in conjunction with any other therapy?

Tom

**************Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)

[Guest guest]

Thanks . Was the Lupron in conjunction with any other therapy?

Tom

**************Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food. (http://food.aol.com/tyler-florence?video=4 & ?NCID=aolfod00030000000002)