Henry's second Lupron shot

Our son has taken Henry to get his second Lupron shot this morning.

Please - I really need advice since I don't know which end is up. Henry is
in continuous pain, is unable to sleep for long at night, is depressed, very
irritable, has actually broken down and cried. He has even said he wishes
he were dead. This is not my stoic husband. If he says something hurtful
I don't say a word; it's not like him. Is this usual? I don't know which
way to turn. He has cut himself off from friends so it's pretty lonely
around here.

Dora

--
limey113@yahoo.com

limey wrote:
> Our son has taken Henry to get his second Lupron shot this morning.
>
> Please - I really need advice since I don't know which end is up. Henry is
> in continuous pain, is unable to sleep for long at night, is depressed, very
> irritable, has actually broken down and cried. He has even said he wishes
> he were dead. This is not my stoic husband. If he says something hurtful
> I don't say a word; it's not like him. Is this usual? I don't know which
> way to turn. He has cut himself off from friends so it's pretty lonely
> around here.

Dora, one of the most crucial elements of making tough choices is the
key word in that phrase: CHOICE. Virtually every decision humans make
has alternatives among which we get to choose, and making and following
an educated choice is not only the best we can do to resolve each
dilemma, it is our best shot at ACCEPTING that choice.
Once we've:
done our research,
clearly listed the alternatives,
analyzed them coldly until a decision surfaced, then maybe
consulted our gut if THOROUGH research doesn't reveal a clear choice,
the choice becomes OURS, which makes it much more acceptable than
letting fate or karma or some wiener with an M.D. or our insurance or
momentum make the choice FOR us.

You and Henry have several alternatives to chose among, including
intermittent or continual ADT1, 2, or 3 with or without various
additional drugs to fight ADT SEs or no ADT with or without (not a
likely choice) legal and/or illegal pain medication. To start narrowing
those alternatives down, realize (and verify with research including
reading the literature and asking more knowledgeable people here than I)
that:
1. ADT 2 and 3 show little if any improvement yet more SEs compared to
ADT1,
2. Intermittent ADT may not provide relief from its SEs (a trial stop
may answer that question for each individual), and
3. MANY people on ADT for metastasized prostate cancer -- in this forum,
in studies, and even among oncologists with PC -- decide their ADT SEs
are worse than the disease it tries to mitigate and just chuck the ADT
to face their remaining time with a clear head, an intact personality,
and an improved, even if shortened, QOL.

Ultimately, when all choices are apparently gone and there's nothing
left but extreme suffering, there are STILL choices.

Choice sets us free, or at the very least mitigates the pressure, and
ADT is a choice. Many of us made ADT choices under less immediate
pressure but with greater threat to our lives, with no second thoughts
because the choice was OURS and was informed. [I was one of those, and
discussed the alternatives and decision factors at length (duh!)
beginning in about Dec '04 or so, if that will help you focus your
research.]

I.P.

"I.P. Freely" <fuhgheddaboutit@noway.nohow> wrote in message
news:Ggdlh.53$1O5.44@newsfe04.lga...
>
>
> You and Henry have several alternatives to chose among, including
> intermittent or continual ADT1, 2, or 3 with or without various additional
> drugs to fight ADT SEs or no ADT with or without (not a likely choice)
> legal and/or illegal pain medication. To start narrowing those
> alternatives down, realize (and verify with research including reading the
> literature and asking more knowledgeable people here than I) that:
> 1. ADT 2 and 3 show little if any improvement yet more SEs compared to
> ADT1,
> 2. Intermittent ADT may not provide relief from its SEs (a trial stop may
> answer that question for each individual), and
> 3. MANY people on ADT for metastasized prostate cancer -- in this forum,
> in studies, and even among oncologists with PC -- decide their ADT SEs are
> worse than the disease it tries to mitigate and just chuck the ADT to face
> their remaining time with a clear head, an intact personality, and an
> improved, even if shortened, QOL.
>
> Ultimately, when all choices are apparently gone and there's nothing left
> but extreme suffering, there are STILL choices.
>

> I.P.

Are you saying, then, that all the unpleasant things that Henry is
experiencing are not necessarily from the metastisized cancer, but are from
the Lupron? This was certainly not explained to him by the uro.

Dora

On December 29, Dora wrote:

> Our son has taken Henry to get his second Lupron shot this morning.
>
> Please - I really need advice since I don't know which end is up. Henry is
> in continuous pain, is unable to sleep for long at night, is depressed, very
> irritable, has actually broken down and cried. He has even said he wishes
> he were dead. This is not my stoic husband. If he says something hurtful
> I don't say a word; it's not like him. Is this usual? I don't know which
> way to turn. He has cut himself off from friends so it's pretty lonely
> around here.

This looks to me to be caused at least in major part by the androgen
deprivation therapy (ADT) with Lupron or any other such drug.

I recommend reading the section on androgen deprivation syndrome (ADS)
on the Prostate Cancer Research Institute (PCRI) website at
http://www.prostate-cancer.org/educa...Strum_ADS.html
This will provide information on what to expect and how to deal with it.
This is something that the medic (is he a uro or a cancer specialist?)
should have done but is often neglected. I have fired a rad onc who knew
nothing about SEs and did not care to learn.

I do know that many folks have found professional psychological help to
be beneficial, too.

Notwithstanding ignorant naysayers, ADT is a well-documented palliative
treatment that sometimes can be curative. I cited a 2002 study (Labrie,
et al.) on the "Uros Prescribing ADT" thread on 12/26.

So far as the continuous pain is concerned, I have to wonder about the
competence — as well as attitude — of a medic who would permit such a
thing to continue untreated.

Good luck.

Regards,

Steve J

limey wrote:
> "I.P. Freely" <fuhgheddaboutit@noway.nohow> wrote in message
> news:Ggdlh.53$1O5.44@newsfe04.lga...
>>
>> You and Henry have several alternatives to chose among, including
>> intermittent or continual ADT1, 2, or 3 with or without various additional
>> drugs to fight ADT SEs or no ADT with or without (not a likely choice)
>> legal and/or illegal pain medication. To start narrowing those
>> alternatives down, realize (and verify with research including reading the
>> literature and asking more knowledgeable people here than I) that:
>> 1. ADT 2 and 3 show little if any improvement yet more SEs compared to
>> ADT1,
>> 2. Intermittent ADT may not provide relief from its SEs (a trial stop may
>> answer that question for each individual), and
>> 3. MANY people on ADT for metastasized prostate cancer -- in this forum,
>> in studies, and even among oncologists with PC -- decide their ADT SEs are
>> worse than the disease it tries to mitigate and just chuck the ADT to face
>> their remaining time with a clear head, an intact personality, and an
>> improved, even if shortened, QOL.
>>
>> Ultimately, when all choices are apparently gone and there's nothing left
>> but extreme suffering, there are STILL choices.
>>
>
>> I.P.
>
> Are you saying, then, that all the unpleasant things that Henry is
> experiencing are not necessarily from the metastisized cancer, but are from
> the Lupron? This was certainly not explained to him by the uro.

Absolutely. Even the pain, if it's due to Lupron-exacerbated
osteoarthritis rather than the mets, is Lupron-induced. Some have
compared their ADT-induced joint pain to that of many breaking/broken
bones when they move, and the rest of Henry's symptoms are but a
sampling of the classic ADT SEs, whether the androgen depletion is
induced by castration, by drugs, or naturally.

I'd fire that sorry excuse for a uro, report him to the state medical
board, and begin my research in this forum and at many other sites
guided by Google.

This is yet another example of why I don't give one single damn that
many people here condemn me for my ADT tirade and one even attacks me
every time his self-denied ADT funk bites him in the ass [can you tell I
AM angry this time, given the fact that Henry's uro is treating him like
an idiot?). Maybe Limey and Henry will still decide ADT SEs beat met
symptoms, but IT'S THEIR DAMNED CHOICE, not some frigging doctor's, to
make, especially when understanding one's symptoms and MAKING A CHOICE
goes a long ways to mitigate them.

I.P.

limey wrote:

> Are you saying, then, that all the unpleasant things that Henry is
> experiencing are not necessarily from the metastisized cancer, but are from
> the Lupron? This was certainly not explained to him by the uro.

Dor,

I was on Lupron for 8 months. I had two of the 4 month horse-needles
in my butt.

The first month was OK. About the 3rd month, I had many side effects.

Completely impotent, indifferent to women and no trace of any
sexuality.

Exhausted.

Hot flashes.

300 fasting blood sugar, where normal is 100, 110 maybe. This can
cause a feeling like being drunk, confusion, dry mouth, pee'ing all the
time as the kidneys try to purge the sugar.

Joint pain, mostly in the small joints, fingers and toes but my right
knee too. These feel like stabbing needles.

Irritable, some of this is understandable because I was working with
dysfunctional idiots who blathered all day long about schedules,
meetings; they all thought they were computer experts because they had
a PC or read a brochure once.

800 Triglycerides.

Not to mention, living with the diagnosis of cancer.

It's a big burden, the diagnosis, the side effects, not being able to
achieve an erection, or have an orgasm for a year.

I never had a single moment's disability or problem from the cancer.
The only reason I know I have cancer is from the blood tests, biopsy,
and electronic scanning.

All my misery was from the treatment and most of that was from the
Lupron.

I've heard that advanced metastasized prostate cancer is painful.
That's not what I had. I was diagnosed T1c, PSA 10, Gleason 7(4+3) in
5% of one core of 12 and visualized through an enhanced MRI as "bulky
anterior". Bone scan, Prostascint, PET-scan, all negative.

-kh

limey wrote:
> Our son has taken Henry to get his second Lupron shot this morning.

wanted to add, another problem is that a guy might not want to tell
folks, "say, I'm impotent" and "did I mention I can't have penetrative
sex?"

Talking about prostate cancer opens up those issues.

"Oh and by the way, the treatment might make me incontinent, save the
coupons for diapers, will you."

The net result is that it's real easy to internalize it, become
fearful, angry, withdrawn.

I don't know if that's what's going on with Henry but it is a
possibility.

-kh

Steve, as the risk of falling into the ignorant naysayer category (you
must have been on the debate team); you refer to a paper/article that
describes ADT as a palliative treatment that "sometimes can be
curative". I certainly agree ADT is a palliative treatment, but
"curative"? I guess I'm a hard liner on the word "cure" even though it
can mean alleviate or restore to health. I always think of cure, in the
context of cancer, as having zero cancer cells remaining after
treatment. Anyway, with due respect, I challenge that ADT can be
referred to as curative.

Rich


Steve Jordan wrote:
> On December 29, Dora wrote:
>
> snip
>
> Notwithstanding ignorant naysayers, ADT is a well-documented palliative
> treatment that sometimes can be curative. I cited a 2002 study (Labrie,
> et al.) on the "Uros Prescribing ADT" thread on 12/26.
>
> snip
>
> Steve J

On December 29, Rich replied to me:

> ......you refer to a paper/article that
> describes ADT as a palliative treatment that "sometimes can be
> curative". I certainly agree ADT is a palliative treatment, but
> "curative"? I guess I'm a hard liner on the word "cure" even though it
> can mean alleviate or restore to health. I always think of cure, in the
> context of cancer, as having zero cancer cells remaining after
> treatment. Anyway, with due respect, I challenge that ADT can be
> referred to as curative.

See the article, the conclusion of which is, "The present data suggest
that long-term and continuous CAB offers the possibility of long-term
control or possible cure of localized prostate cancer."

Although I've seen suggestions elsewhere that ADT might be curative, I
was pleasantly surprised to see this from such a prestigious medic.

I recommend that anyone who wonders about this read the article, as I
have cited it in the post to which I referred.

This is not my overheated imagination; it's what the authors wrote. If
anyone disagrees let him take it up with the authors, not me.

IOW, don't shoot the messenger. Or even kick him.

As I wrote in my post, the PubMed ID is 12100935.

Regards,

Steve J

Dora wrote:

> Are you saying, then, that all the unpleasant things that Henry is
> experiencing are not necessarily from the metastisized cancer, but are from
> the Lupron? This was certainly not explained to him by the uro.


Anyone can access the FDA's website and look up drugs. Here
is one posting (of many) re: LUPRON

[ long, even with chemisty and other notions removed ]


LUPRON (leuprolide acetate injection)
DESCRIPTION This is the cached copy of
http://www.fda.gov/medwatch/SAFETY/2.../Lupron_PI.pdf


Page 1
LUPRON (leuprolide acetate injection)
DESCRIPTION Leuprolide acetate is a synthetic nonapeptide analog of
naturally occurring gonadotropin releasing hormone (GnRH or LH-RH).
The analog possesses greater potency than the natural hormone.

CLINICAL PHARMACOLOGY: Leuprolide acetate, an LH-RH agonist, acts as a
potent inhibitor of gonadotropin secretion when given continuously and
in therapeutic doses. Animal and human studies indicate that following
an initial stimulation of gonadotropins, chronic administration
of leuprolide acetate results in suppression of ovarian and testicular
steroidogenesis.

In males, testosterone is reduced to castrate levels.

Page 2

Page 3
WARNINGS Initially, LUPRON, like other LH-RH agonists, causes increases
in serum levels of testosterone. Transient worsening of symptoms, or
the occurrence of additional signs and symptoms of prostate cancer, may
occasionally develop during the first few weeks of LUPRON treatment.
A number of patients may experience an increase in bone pain, which can
be managed symptomatically. As with other LH-RH agonists, isolated
cases
of ureteral obstruction and spinal cord compression have been observed,
which may contribute to paralysis with or without fatal complications.


Page 4
ADVERSE REACTIONS: In the majority of patients testosterone levels
increased above baseline during the first week, declining thereafter
to baseline levels or below by the end of the second week of treatment.
This transient increase was occasionally associated with a temporary
worsening of signs and symptoms, usually manifested by an increase in
bone pain (see WARNINGS section). In a few cases a temporary worsening
of existing hematuria and urinary tract obstruction occurred during the
first week. Temporary weakness and paresthesia of the lower limbs have
been reported in a few cases. Potential exacerbations of signs and
symptoms during the first few weeks of treatment is a concern in
patients with vertebral metastases and/or urinary obstruction which,
if aggravated, may lead to neurological problems or increase the
obstruction. In a comparative trial of LUPRON (leuprolide acetate)
Injection versus DES, in 5% or more of the patients receiving either
drug, the following adverse reactions were reported to have a possible
or probable relationship to drug as ascribed by the treating physician.
Often, causality is difficult to assess in patients with metastatic
prostate cancer. Reactions considered not drug related are excluded.

Page 5
LUPRON DES (N=98)
(N=101)
Number of Reports
Cardiovascular System
Congestive heart
failure.................1......................... ......5
ECG changes/ischemia................19........................ .....22
High blood
pressure......................8................... .............5
Murmur..........................................3. ...............................8
Peripheral
edema........................12................... ...........30
Phlebitis/thrombosis......................2................. .............10

Gastrointestinal System
Anorexia.........................6............5
Constipation.....................7............9
Nausea/vomiting..................5...........17


Endocrine System
*Decreased testicular size.......7...........11
*Gynecomastia/breast tenderness or pain.7....63
*Hot flashes....................55...........12
*Impotence.......................4...........12

Hemic and Lymphatic System
Anemia...........................5............5

Musculoskeletal System
Bone pain........................5............2
Myalgia..........................3............9

Central/Peripheral Nervous System
Dizziness/lightheadedness........5............7
General pain....................13...........13
Headache.........................7............4
Insomnia/sleep disorders.........7............5


Respiratory System
Dyspnea..........................2............8
Sinus congestion.................5............6


Integumentary System
Dermatitis.......................5............8


Urogenital System
Frequency/urgency................6............8
Hematuria........................6............4
Urinary tract infection..........3............7


Miscellaneous
Asthenia........................10...........10

*Physiologic effect of decreased testosterone.
In this same study, the following adverse reactions were reported
in less than 5% of the patients on LUPRON.

Cardiovascular System: Angina, Cardiac arrhythmias,
Myocardial infarction, Pulmonary emboli;

Gastrointestinal System: Diarrhea, Dysphagia, Gastrointestinal
bleeding,

Gastrointestinal disturbance, Peptic ulcer, Rectal polyps;

Endocrine System: Libido decrease, Thyroid enlargement;

Musculoskeletal System: Joint pain;

Central/Peripheral Nervous System: Anxiety, Blurred vision,
Lethargy, Memory disorder, Mood swings, Nervousness, Numbness,
Paresthesia, Peripheral neuropathy, Syncope/ blackouts, Taste
disorders;

Respiratory System: Cough, Pleural rub, Pneumonia, Pulmonary
fibrosis;

Integumentary System: Carcinoma of skin/ear, Dry skin, Ecchymosis,
Hair loss, Itching, Local skin reactions, Pigmentation, Skin lesions;

Urogenital System: Bladder spasms, Dysuria, Incontinence,
Testicular pain, Urinary obstruction;

Miscellaneous: Depression, Diabetes, Fatigue, Fever/chills,
Hypoglycemia, Increased BUN, Increased calcium, Increased
creatinine, Infection/inflammation, Ophthalmologic disorders,
Swelling (temporal bone).



The following additional adverse reactions have been reported with
LUPRON or LUPRON DEPOT (leuprolide acetate for depot suspension)
during other clinical trials and/or during postmarketing surveillance.
Reactions considered as nondrug related by the treating physician are
excluded.

Cardiovascular System: Hypotension, Transient ischemic attack/stroke;

Gastrointestinal System: Hepatic dysfunction;

Endocrine System: Libido increase;

Hemic and Lymphatic System: Decreased WBC, Hemoptysis;

Musculoskeletal System: Ankylosing spondylosis, Pelvic fibrosis;

Central/Peripheral Nervous System: Hearing disorder, Peripheral
neuropathy, Spinal fracture/paralysis;

Respiratory System: Pulmonary infiltrate, Respiratory disorders;

Integumentary System: Hair growth;

Urogenital System: Penile swelling, Prostate pain;

Miscellaneous: Hypoproteinemia, Hard nodule in throat,
Weight gain, Increased uric acid.

Changes in Bone Density: Decreased bone density has been reported
in the medical literature in men who have had orchiectomy or who
have been treated with an LH-RH agonist analog. In a clinical trial,
25 men with prostate cancer, 12 of whom had been treated previously
with leuprolide acetate for at least six months, underwent bone
density studies as a result of pain. The leuprolide-treated group
had lower bone density scores than the nontreated control group.
It can be anticipated that long periods of medical castration in
men will have effects on bone density.


Page 7
INFORMATION FOR PATIENTS Be sure to consult your physician with any
questions you may have or for information about LUPRON (leuprolide
acetate injection) and its use. What is LUPRON? LUPRON (leuprolide
acetate injection) is chemically similar to gonadotropin releasing
hormone (GnRH or LH-RH) a hormone which occurs naturally in your body.
Normally, your body releases small amounts of LH-RH and this leads
to events which stimulate the production of sex hormones. However,
when you inject LUPRON (leuprolide acetate) Injection, the normal
events that lead to sex hormone production are interrupted and
testosterone is no longer produced by the testes. LUPRON must be
injected because, like insulin which is injected by diabetics,
LUPRON is inactive when taken by mouth. If you were to discontinue
the drug for any reason, your body would begin making testosterone
again.

Page 8
SOME SPECIAL ADVICE
You may experience hot flashes when using LUPRON (leuprolide acetate)
Injection. During the first few weeks of treatment you may experience
increased bone pain, increased difficultyin urinating, and less
commonly
but most importantly, you may experience the onset or aggravation of
nerve symptoms. In any of these events, discuss the symptoms with your
doctor. Like other treatment options, LUPRON may cause impotence.
Notify
your doctor if you develop new or worsened symptoms after beginning
LUPRON treatment.

"limey" <limey113@yahoo.com> wrote in message news:jYalh.3$xu4.0@trndny07...
> Our son has taken Henry to get his second Lupron shot this morning.
>
> Please - I really need advice since I don't know which end is up. Henry
> is in continuous pain, is unable to sleep for long at night, is depressed,
> very irritable, has actually broken down and cried. He has even said he
> wishes he were dead. This is not my stoic husband. If he says something
> hurtful I don't say a word; it's not like him. Is this usual? I don't
> know which way to turn. He has cut himself off from friends so it's
> pretty lonely around here.

When last you posted, Dora, you told us that there were hot spots just about
everywhere. Lupron took the PSA down to 0.60, but that was a couple of
months ago. I'm wondering if the bone pain ever subsided -- I suspect not.
Of course, most of us have not yet experienced that type of involvement, but
I understand it is just horrendous. I did watch my dad die from the disease
and his bone pain was terrible.

Pain has a way of working on a man to the point where it tears down the
being and then the facade that we put up around us.

Then there is also the possibility of cancer in his brain, which will alter
his behavior and his thinking.

I have no advice for you. I am sorry for that. There are great pain meds
out there now, but some don't help the pain he may be experiencing and there
is nothing that can help the problem if his brain is affected.

Dora,

I wish we could give you more advice on all this, but it sounds
to me like Henry's doctor will be in the best position to figure
out what to do.

If the pain is due to a bone pain flare from the temporary
increase in testosterone that ADT creates, it will subside
very soon. If not, then maybe the doctors can help. If the
pain is in a single spot, they may be able to radiate that
spot or inject pain killers, that will relieve it. If it is systemic,
they may be able to give oral pain killers that will help a lot.

Depression is common with cancer. Who wouldn't be
depressed when he finds out he has a fatal illness?
Depression is common with chronic pain. And depression
can also be a side effect of hormonal changes caused by
ADT. Put all of these together and it's easy to see that
Henry's life has turned upside down.

However, although life has become tremendously more
difficult, there is still a decent chance that he has some years
ahead of him. It is worthwhile for him to make an effort to
overcome the problems and make the best of those years.
Drugs may help. Therapy may help. Reconnecting with his
friends, his family, and his favorite pastimes may help.

We can never go back to the life we had when we were young
and healthy but we still have a chance to get something from
what is left to us. I hope that the two of you can work through
the problems together and find a way to the pleasures and
satisfactions that still remain. There are still some there.

Best of luck to both of you.

Alan

"limey" <limey113@yahoo.com> wrote in message
news:fCdlh.68$5q6.24@trndny02...

>
> Are you saying, then, that all the unpleasant things that Henry is
> experiencing are not necessarily from the metastisized cancer, but are
> from the Lupron? This was certainly not explained to him by the uro.
>
> Dora

I think that is exactly what he is saying. It is a common theme wherein IP
is concerned. I don't mean that in a negative way, it is just a fact. When
he is presented with a choice between death and HT, he may choose the former
rather than chance the side effects of that latter. From his testimony
here, I don't think even he knows in which direction he will choose.

It does have to be considered, but it is not a likely side effect of Lupron
in and of itself.





--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA .1 .1 .1 .27 .37 .75
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06, 6/06
PSA .07 .05 .06 .09 .08 .132 .145
Casodex added daily 07/06
PSA <0.04
Non Illegitimi Carborundum

"Richbro" <richard.sherry@verizon.net> wrote in message
news:1167437221.522608.273410@v33g2000cwv.googlegr oups.com...
> Steve, as the risk of falling into the ignorant naysayer category (you
> must have been on the debate team); you refer to a paper/article that
> describes ADT as a palliative treatment that "sometimes can be
> curative". I certainly agree ADT is a palliative treatment, but
> "curative"? I guess I'm a hard liner on the word "cure" even though it
> can mean alleviate or restore to health. I always think of cure, in the
> context of cancer, as having zero cancer cells remaining after
> treatment. Anyway, with due respect, I challenge that ADT can be
> referred to as curative.

I was shocked to here my doc say the same thing. It was years ago when I
first started taking Lupron and I do not any longer remember all that was
said, but as I recall it had something to do with there being seven types of
cancer cells and, of those, three types are susceptible to ADT even unto
death. This circumstance, he said, is extremely rare.


--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA .1 .1 .1 .27 .37 .75
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06, 6/06
PSA .07 .05 .06 .09 .08 .132 .145
Casodex added daily 07/06
PSA <0.04
Non Illegitimi Carborundum

Thank you, everyone, for all the information you have provided and which I
am digesting. We're learning, little by little. :-(

Dora

"Steve Kramer" wrote:
> When last you posted, Dora, you told us that there were hot spots just
> about everywhere.

Yes, I've a parallel - imagine the skeleton is a Christmas tree. He's
covered everywhere with lights.

>Lupron took the PSA down to 0.60, but that was a couple of months ago.

The report received yesterday was that it was down to 0.4. Good news!

I'm wondering if the bone pain ever subsided -- I suspect not.
> Of course, most of us have not yet experienced that type of involvement,
> but I understand it is just horrendous. I did watch my dad die from the
> disease and his bone pain was terrible.

No, the pain has not subsided, which actually triggered my question about
whether it was from the cancer or from the Lupron. I've been busy reading
all the info everyone supplied me.
>
> Pain has a way of working on a man to the point where it tears down the
> being and then the facade that we put up around us.

You're correct, Steve. He's held up very well but it certainly is taking
its toll now.
>
> Then there is also the possibility of cancer in his brain, which will
> alter his behavior and his thinking.

No, he recently had another MRI, this time of his neck and brain. The
brain is OK - the neck is another matter. (Can you believe it showed he had
broken his neck at some time and it has never united properly???).

> I have no advice for you. I am sorry for that. There are great pain meds
> out there now, but some don't help the pain he may be experiencing and
> there is nothing that can help the problem if his brain is affected.

Our internist has him on 10 mg Percoset every four hours, but it doesn't
seem to help. Our MD said he would try other meds if this doesn't help
much.

In the meantime, we live our lives as normally as possible, given the
constraints. It's hard to see him suffer, though.
Thanks, Steve.

Dora

Steve Kramer wrote:
> "limey"
>
>> Are you saying, then, that all the unpleasant things that Henry is
>> experiencing are not necessarily from the metastisized cancer, but are
>> from the Lupron? This was certainly not explained to him by the uro.

> I think that is exactly what he is saying. It is a common theme wherein IP
> is concerned. I don't mean that in a negative way, it is just a fact. When
> he is presented with a choice between death and HT, he may choose the former
> rather than chance the side effects of that latter.

Nope. When my cancer returns, I'll certainly try ADT, so I can make an
informed choice as to its benefits and downsides in my own personal
case. That's where Henry is now. He got unlucky and got nailed by
several of ADT's best-documented and likely SEs; maybe I'd hit the other
side of the bell curve and get only a couple of "optional" SEs in
addition to the given ones. But, again, the key word is "choice";
because my initial and secondary treatment choices were made
1) by me and my wife, not by a busy doctor,
2) after extensive research
3) according to our criteria, not a doctor's sworn oath to a very
different, narrow agenda,
we won't think about them any more until our circumstances or criteria
change significantly, as Henry's have.

> From his testimony here, I don't think even he knows in which
> direction he will choose.

Correct. But at least it will be MY choice, and that's vital to my
acceptance of it.

>
> It does have to be considered, but it is not a likely side effect of Lupron
> in and of itself.

Very extensive literature, several first-hand accounts here, and my
consultation with a VA geriatric psychologist say Dora's description of
Henry's status is spot-on ADT Syndrome, even a moderate case by some
standards (particularly the VA psychologist). After all, Henry
apparently doesn't soak the bedding with hot sweats a few times per
night and may not have gynecomastia yet. (He IS getting treated to
prevent osteoporosis, was pre-radiated to prevent gynecomastia, was
pre-drugged to minimize bone pain surge, and is being treated with drugs
and exercise for all those SEs, right?)

>> Thank you, everyone, for all the information you have provided and
>> which I am digesting. We're learning, little by little. :-(

The first few courses in PC 101 are a firehose of knowledge, then it
slows as we dig deeper for more specific knowledge. One important thing
to realize is not to take the word of most Internet wankers like myself
for any critical decision-making details; instead, follow our leads to
more credible sources so our opinions don't sway yours. The pitfall
there, of course, is that many of the published studies have a wide
variety of significant flaws, many pointed out by further studies and
many of which are authoritatively disputed by a small handful of
experienced researchers in this forum. I often spot contradictions
between studies, and notice pitifully small or short studies, but am not
qualified to judge without guidance the technical merits of large studies.

FWIW, here are some of the steps I take to TRY to make sense of all this:
1. Decide which topics are worth a lot of effort. That's a very personal
decision. For example, most men begin with RP vs RT; Henry's past those
options.
2. Chase references from this forum and from Google for weeks on end.
3. As long as sources agree, life is sweet. When they conflict, and they
will, the going gets tough.
4. I don't quit until each new inquiry leads to old ground and a
decision has emerged.
5. Then, so far, I act and don't look back unless the action was an
experiment intended to feed a decision. I tried ADT, and so has Henry,
but our circumstances were so vastly different that my choice is of no
importance to to you.

I.P.

limey wrote:
> "Steve Kramer" wrote:
>> When last you posted, Dora, you told us that there were hot spots just
>> about everywhere.
>
> Yes, I've a parallel - imagine the skeleton is a Christmas tree. He's
> covered everywhere with lights.
> No, the pain has not subsided, which actually triggered my question
> about whether it was from the cancer or from the Lupron.

Then his pain is most likely from the cancer, and that explains in part
why your uro simply said, "Do it" and didn't bother with all the
pre-treatments I asked about. But he still should have explained the SEs
so they wouldn't surprise you, should be trying to mitigate them, and, I
gravely hope, has told you how serious "Christmas trees" are.

>> Then there is also the possibility of cancer in his brain, which will
>> alter his behavior and his thinking.

That could still be either cancer or ADT. The docs should be able to
determine which is the source and mitigate it if caused by the ADT.

I.P.

On Fri, 29 Dec 2006 16:00:15 GMT, "limey" <limey113@yahoo.com> wrote:

>Our son has taken Henry to get his second Lupron shot this morning.
>
>Please - I really need advice since I don't know which end is up. Henry is
>in continuous pain, is unable to sleep for long at night, is depressed, very
>irritable, has actually broken down and cried. He has even said he wishes
>he were dead. This is not my stoic husband. If he says something hurtful
>I don't say a word; it's not like him. Is this usual? I don't know which
>way to turn. He has cut himself off from friends so it's pretty lonely
>around here.
>
>Dora
I was on Lupron for 25 months. Breast swelled, testicles shrunk,
40-50 hot flashes a day and depression. I came very close to
suicide.. I have talked to other men who had the same results..
Later, when I had to choose between surgical castration and going back
on Lupron, I chose the surgery because I knew I would kill myself on
Lupron. It did keep my PSA down for awhile. I have fought this for
over six years now and will probably begin chemo and a clinical trial
in February. Henry is going through some very difficult times.
Without my wife by my side , I would be dead. Best wishes and good
luck.

Allan Matthews wrote:

> I was on Lupron for 25 months. Breast swelled, testicles shrunk,
> 40-50 hot flashes a day and depression. I came very close to
> suicide.. I have talked to other men who had the same results..

With only 8 months, I did not experience that level of suffering but I
can imagine it.

For me, the worse was the sugar-buzz and the disorientation day after
day. I don't know if it's the Lupron, the lower Testosterone, the
elevated blood sugar or some other mechanism but I was a wreck for most
of the 8 months.

My coping strategy was to keep away from dysfunctional people (most
managers), focus on my health, career, and the things that matter to
me.

This had a positive effect on my life. I was able to come to terms
with several situations and have moved on. This is job, friends, life
in general.

The reasoning seems to have been, "hey, I'm in treatment for a fatal
disease; I'm having a hard time; why should I put up with THAT baloney
too."

At 26 months after rad, I'm still having side effects. I'm pretty
much over the Lupron although I still have joint pain in my toes and my
last A1c was 7.1.

-kh

Allan Matthews wrote:
>
> I was on Lupron for 25 months . . .
> Later, when I had to choose between surgical castration and going back
> on Lupron, I chose the surgery because I knew I would kill myself on
> Lupron. It did keep my PSA down for awhile.

Sad story, Allan, but profound and highly informative news if generally
applicable: it seems to pin ADT SEs on the drugs, rather than on the
androgen deprivation. That's barely short of earth-shaking for people
having to make an ADT decision, especially if they've had a really bad
reaction to ADT.

That . . . or your adrenal glands produced enough T to mitigate your SEs
and you were on CAB before the knife.

I'd surely like to hear more about that, from you or anyone else with
insight into this.

I.P.