Re: Prognosis

February 28, 2010

First we empathise with you, your family and Jack.

I don't think anyone can be sure about the length of time anyone can live wwith prostate cancer. (PCa)

I knew someone who was given a few months to live and lived 11 years after diagnosis.

Your doctors are right too to tell you this will be a battle for Jack, it is almost as though he needs full time or part time hospice care.

I would think that one of the objectives is pain management, this is way I suggested the hospice.

Zoledex or Lupron implants stop the testes producing male hormones which have been shown to be a growth promoter for PCa

The Casodex is there to block the male hormones produced by other glands. He really needs a reminder to take them, if it can work.

I presume he is having another blood test soon. Let us know what that is.

Meanwhile we are with you in the battle!

Prognosis

This is my first post. I would genuinely appreciate anyone addressing my problem. I'm very confused about my brother, Jack and his "situation" with stage 4, pros. cancer. Our family needs answers, and his oncologist is vague to the point that we don't know what to do. Jack is 54, and has brain damage resulting from an accident when he was a teen. He had 45 days of radiation, and within a few months the cancer spread throughout the skeletal system. He was referred to an oncologist around 6 months ago and began hormone treatment with a PSA of 2500. The PSA level went down to 350, and then up to 1500. He also takes Casodox(sp.) and failed to take the med. for 4 to 6 weeks. . (Could this have made the PSA rise this much?) The dr. says that if hormone tmt. fails to work or quits working that chemo. will be next. It is terribly frustrating to not know how to talk/interact w/ Jack, or particularly to plan for whatever future he has left, esp. considering his brain damage. I'm sure that the dr. is uncertain about what kind of info. Jack can mentally handle. I've talked to the dr. alone, he was very rushed and brief. He says that he has had patients "live for many years on hormone tmt., and also on chemo. tmt.". Jack weighs 145 lbs., down from 240 lbs. eighteen mos. ago, and claims pain that starts in the shoulder/ arm area , then radiates throughout. Jack lives alone for the past 5 years since our mother died, and has gotten along well despite his frontal lobe brain damage. Can anyone tell me more than the doctor will? How do I plan for him? What can I expect to be happening to him medically? Where can I find information that will address this stage of his everyday experience? I will appreciate any answers.

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February 28, 2010

,Your brother is a lucky man to have a sister who is clearly concerned about him and his health. There is no way to predict how long your brother has to live, but he is clearly a sick man. It would be helpful if you were able to more specifically lay out your brothers history including dates and results of PSA tests, specifically what drugs were given to him and on what dates as well as any other tests he had.

You mentioned that he was put on hormone therapy and neglected to take the casodex. Was the hormone therapy exclusively the casodex, or did he receive any other drugs? Putting together a more complete history will help us to understand the situation so that we can better help.

I also suggest that you join the advanced prostate cancer group where we have over 450 people involved specifically in help each other deal with the later stages of this disease (which your brother clearly has). You can join by going to: http://health.groups.yahoo.com/group/advancedprostatecancer/join

This is my first post. I would genuinely appreciate anyone addressing my problem. I'm very confused about my brother, Jack and his " situation " with stage 4, pros. cancer. Our family needs answers, and his oncologist is vague to the point that we don't know what to do. Jack is 54, and has brain damage resulting from an accident when he was a teen. He had 45 days of radiation, and within a few months the cancer spread throughout the skeletal system. He was referred to an oncologist around 6 months ago and began hormone treatment with a PSA of 2500. The PSA level went down to 350, and then up to 1500. He also takes Casodox(sp.) and failed to take the med. for 4 to 6 weeks. . (Could this have made the PSA rise this much?) The dr. says that if hormone tmt. fails to work or quits working that chemo. will be next. It is terribly frustrating to not know how to talk/interact w/ Jack, or particularly to plan for whatever future he has left, esp. considering his brain damage. I'm sure that the dr. is uncertain about what kind of info. Jack can mentally handle. I've talked to the dr. alone, he was very rushed and brief. He says that he has had patients " live for many years on hormone tmt., and also on chemo. tmt. " . Jack weighs 145 lbs., down from 240 lbs. eighteen mos. ago, and claims pain that starts in the shoulder/ arm area , then radiates throughout. Jack lives alone for the past 5 years since our mother died, and has gotten along well despite his frontal lobe brain damage. Can anyone tell me more than the doctor will? How do I plan for him? What can I expect to be happening to him medically? Where can I find information that will address this stage of his everyday experience? I will appreciate any answers.

-- T Nowak MA, MSWDirector for Advocacy and Advanced Prostate Cancer Programs, Malecare Inc. Men Fighting Cancer TogetherSurvivor - Thyroid, Recurrent Prostate and Renal Cancers

www.advancedprostatecancer.net - A blog about advanced and recurrent prostate cancerwww.malecare.com - information and support about prostate cancer

http://health.groups.yahoo.com/group/advancedprostatecancer/ - an online support group for men and their families diagnosed with advanced and recurrent prostate cancer

February 28, 2010

mizewoods wrote:

> This is my first post. I would genuinely appreciate anyone

> addressing my problem. I'm very confused about my brother,

> Jack and his " situation " with stage 4, pros. cancer. Our

> family needs answers, and his oncologist is vague to the point

> that we don't know what to do. Jack is 54, and has brain

> damage resulting from an accident when he was a teen. He had

> 45 days of radiation, and within a few months the cancer spread

> throughout the skeletal system. He was referred to an

> oncologist around 6 months ago and began hormone treatment

> with a PSA of 2500. The PSA level went down to 350, and then

> up to 1500. He also takes Casodox(sp.) and failed to take the

> med. for 4 to 6 weeks. . (Could this have made the PSA rise

> this much?) The dr. says that if hormone tmt. fails to work

> or quits working that chemo. will be next. It is terribly

> frustrating to not know how to talk/interact w/ Jack, or

> particularly to plan for whatever future he has left, esp.

> considering his brain damage. I'm sure that the dr. is

> uncertain about what kind of info. Jack can mentally handle.

> I've talked to the dr. alone, he was very rushed and brief.

> He says that he has had patients " live for many years on

> hormone tmt., and also on chemo. tmt. " . Jack weighs 145 lbs.,

> down from 240 lbs. eighteen mos. ago, and claims pain that

> starts in the shoulder/ arm area , then radiates throughout.

> Jack lives alone for the past 5 years since our mother died,

> and has gotten along well despite his frontal lobe brain

> damage. Can anyone tell me more than the doctor will? How do

> I plan for him? What can I expect to be happening to him

> medically? Where can I find information that will address this

> stage of his everyday experience? I will appreciate any

> answers.

,

I'm sorry to hear of your brother's situation. I know that this

is very tough on you as well as him, trying to do the best for

him but not knowing what is really going on or what " the best "

is.

I'm not a doctor or expert of any kind. What I have to say may

well be wrong. But I'll try to give you a few thoughts that I

hope will be of some help.

First of all, it looks to me like hormone therapy didn't work for

your brother and won't work in the future. I would think that a

positive response would have dropped his PSA way below 350, down

to single, or at worst low double, digits. It also would have

stayed low for six month or a year or more. Clearly, it's not

working now.

Chemotherapy may help, but it won't save him and he's unlikely to

live for a long time on it. The National Cancer Institute

treatment statement for prostate cancer

(http://www.cancer.gov/cancertopics/pdq/treatment/prostate/healthprofessional)

says:

" ... a retrospective analysis has shown that PSA declines of

20% to 40% (but not 50%) at 3 months and 30% or more at 2

months after initiation of chemotherapy for hormone

independent prostate cancer, fulfilled several criteria of

surrogacy for OS [overall survival]. "

If that applies to your brother's case, that would produce a

reduction in PSA that would still leave him at death's door.

Should chemotherapy be tried? I don't know. It does relieve

some pain for many patients. It can extend life by a matter of

weeks or months. There are patients who get much more time from

it, but I doubt if many of them have such a high PSA as your

brother. Fighting cancer when it's small is much easier than

fighting it when it's already all over the body and growing fast.

There are difficulties with chemo. Besides the possible nasty

side effects, there is the question of how well your brother can

tolerate the treatment. Can he sit in a chair once a week for

hours with a tube in his arm, his hands in ice water, surrounded

by strangers in a strange room, feeling bad and possibly

nauseous?

My inexpert recommendation at this point is to try to find a pain

specialist, someone whose real specialty is not preventing or

postponing death from prostate cancer, but making the patient

more comfortable with much less pain. At this point, it might be

more beneficial to your brother to make him comfortable and

reduce his pain than to extend his life by a few weeks or months.

It is possible that extending his life by chemotherapy, if it

worked at all, would just extend his misery.

Again, I'm not an expert at this, but it is my understanding that

there are quite a few different kinds of pain and different kinds

of pain medications. End stage cancer patients often have severe

pain in different places requiring different treatments. Most

doctors don't understand much about this. They just prescribe a

standard dose of a common pain killer. But a specialist in pain

management can make a big difference in how the patient feels by

administering the right combination of pills or injections, in

the right doses, combined with anti-anxiety medication if

required.

I think that if you can find a good hospice, they will know who

the best doctors are for palliative care. They will also be able

to provide the best environment to administer and monitor his

pain meds and keep him as comfortable as possible.

I wish the best of luck to you, your brother, and the rest of

your family.

Alan

February 28, 2010

Alan

In the UK we would try Diethyl Stylbesterol plus an anti clotting drug before Chemo

You are right though the first and primary action in my humble opinion is a pain specialist

Re: Prognosis

mizewoods <mizewoods> wrote:> This is my first post. I would genuinely appreciate anyone> addressing my problem. I'm very confused about my brother,> Jack and his "situation" with stage 4, pros. cancer. Our> family needs answers, and his oncologist is vague to the point> that we don't know what to do. Jack is 54, and has brain> damage resulting from an accident when he was a teen. He had> 45 days of radiation, and within a few months the cancer spread> throughout the skeletal system. He was referred to an> oncologist around 6 months ago and began hormone treatment> with a PSA of 2500. The PSA level went down to 350, and then> up to 1500. He also takes Casodox(sp.) and failed to take the> med. for 4 to 6 weeks. . (Could this have made the PSA rise> this much?) The dr. says that if hormone tmt. fails to work> or quits working that chemo. will be next. It is terribly> frustrating to not know how to talk/interact w/ Jack, or> particularly to plan for whatever future he has left, esp.> considering his brain damage. I'm sure that the dr. is> uncertain about what kind of info. Jack can mentally handle.> I've talked to the dr. alone, he was very rushed and brief.> He says that he has had patients "live for many years on> hormone tmt., and also on chemo. tmt.". Jack weighs 145 lbs.,> down from 240 lbs. eighteen mos. ago, and claims pain that> starts in the shoulder/ arm area , then radiates throughout.> Jack lives alone for the past 5 years since our mother died,> and has gotten along well despite his frontal lobe brain> damage. Can anyone tell me more than the doctor will? How do> I plan for him? What can I expect to be happening to him> medically? Where can I find information that will address this> stage of his everyday experience? I will appreciate any> answers. ,I'm sorry to hear of your brother's situation. I know that thisis very tough on you as well as him, trying to do the best forhim but not knowing what is really going on or what "the best"is.I'm not a doctor or expert of any kind. What I have to say maywell be wrong. But I'll try to give you a few thoughts that Ihope will be of some help.First of all, it looks to me like hormone therapy didn't work foryour brother and won't work in the future. I would think that apositive response would have dropped his PSA way below 350, downto single, or at worst low double, digits. It also would havestayed low for six month or a year or more. Clearly, it's notworking now.Chemotherapy may help, but it won't save him and he's unlikely tolive for a long time on it. The National Cancer Institutetreatment statement for prostate cancer(http://www.cancer.gov/cancertopics/pdq/treatment/prostate/healthprofessional)says:"... a retrospective analysis has shown that PSA declines of20% to 40% (but not 50%) at 3 months and 30% or more at 2months after initiation of chemotherapy for hormoneindependent prostate cancer, fulfilled several criteria ofsurrogacy for OS [overall survival]."If that applies to your brother's case, that would produce areduction in PSA that would still leave him at death's door.Should chemotherapy be tried? I don't know. It does relievesome pain for many patients. It can extend life by a matter ofweeks or months. There are patients who get much more time fromit, but I doubt if many of them have such a high PSA as yourbrother. Fighting cancer when it's small is much easier thanfighting it when it's already all over the body and growing fast. There are difficulties with chemo. Besides the possible nastyside effects, there is the question of how well your brother cantolerate the treatment. Can he sit in a chair once a week forhours with a tube in his arm, his hands in ice water, surroundedby strangers in a strange room, feeling bad and possiblynauseous?My inexpert recommendation at this point is to try to find a painspecialist, someone whose real specialty is not preventing orpostponing death from prostate cancer, but making the patientmore comfortable with much less pain. At this point, it might bemore beneficial to your brother to make him comfortable andreduce his pain than to extend his life by a few weeks or months.It is possible that extending his life by chemotherapy, if itworked at all, would just extend his misery.Again, I'm not an expert at this, but it is my understanding thatthere are quite a few different kinds of pain and different kindsof pain medications. End stage cancer patients often have severepain in different places requiring different treatments. Mostdoctors don't understand much about this. They just prescribe astandard dose of a common pain killer. But a specialist in painmanagement can make a big difference in how the patient feels byadministering the right combination of pills or injections, inthe right doses, combined with anti-anxiety medication ifrequired.I think that if you can find a good hospice, they will know whothe best doctors are for palliative care. They will also be ableto provide the best environment to administer and monitor hispain meds and keep him as comfortable as possible.I wish the best of luck to you, your brother, and the rest ofyour family.Alan

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February 28, 2010

--

Your brother is in a difficult situation. I have no idea how to adjust for your

brother's brain damage, while imparting the information he needs for " informed

consent " to what his doctors may want to do. It won't be easy -- but you know

that already.

I suspect that the cancer had spread through his system before the radiation

treatments -- but that's just a layman's guess.

The best book I know, for its treatment of advanced prostate cancer, is:

" A Primer On Prostate Cancer: The Empowered Patient's Guide -- 2nd Edition " ,

by Dr Strum & Pogliano.

It goes through the possibilities for hormone-blocking treatment, and deals with

chemotherapy. It's available through Amazon, and probably through any

bookstore. That's where I'd start reading.

His PSA is high in spite of hormone blocking, which suggests that the cancer has

become testosterone-independent. Strum's book will talk about what to do next

-- there's a range of drugs that work on testorterone-independent cancers, but

which are not classed as " chemotherapy drugs " .

When none of those drugs work, conventional chemotherapy is the next step.

Dr Strum runs the " Prostate Cancer Research Institute " at:

www.prostate-cancer.org

and the section on " androgen-independent " PCa is here:

http://www.prostate-cancer.org/pcricms/node/22

You'll find a lot of good information there. You might also try the Memorial

Sloan Kettering PCa website:

http://www.mskcc.org/mskcc/html/403.cfm

You can also seek out a local PCa support group. If you're in the US, I think

the American Cancer Society runs a bunch of them -- any major city should have

one. There's also a list on the Prostate Cancer Research Institute website.

If you have specific questions, ask -- this group has a lot of collective

experience. And we sympathize with your situation, and with your brother.

>

> This is my first post. I would genuinely appreciate anyone addressing

> my problem. I'm very confused about my brother, Jack and his

> " situation " with stage 4, pros. cancer. Our family needs answers, and

> his oncologist is vague to the point that we don't know what to do.

> Jack is 54, and has brain damage resulting from an accident when he

> was a teen. He had 45 days of radiation, and within a few months the

> cancer spread throughout the skeletal system. He was referred to an

> oncologist around 6 months ago and began hormone treatment with a PSA

> of 2500. The PSA level went down to 350, and then up to 1500. He also

> takes Casodox(sp.) and failed to take the med. for 4 to 6 weeks. .

> (Could this have made the PSA rise this much?) The dr. says that if

> hormone tmt. fails to work or quits working that chemo. will be next.

> It is terribly frustrating to not know how to talk/interact w/ Jack,

> or particularly to plan for whatever future he has left, esp.

> considering his brain damage. I'm sure that the dr. is uncertain about

> what kind of info. Jack can mentally handle. I've talked to the dr.

> alone, he was very rushed and brief. He says that he has had patients

> " live for many years on hormone tmt., and also on chemo. tmt. " . Jack

> weighs 145 lbs., down from 240 lbs. eighteen mos. ago, and claims pain

> that starts in the shoulder/ arm area , then radiates throughout. Jack

> lives alone for the past 5 years since our mother died, and has gotten

> along well despite his frontal lobe brain damage. Can anyone tell me

> more than the doctor will? How do I plan for him? What can I expect to

> be happening to him medically? Where can I find information that will

> address this stage of his everyday experience? I will appreciate any

> answers.

>

February 28, 2010

,

My heart goes out to you and your brother. I read your post and when you mentioned that the doctor was so brief with you I'd suggest another doctor. Remember they work for you and if you are not satisfied with the results you are should maybe move on. That is just my opinion. My husband has just finished treatment for Prostate cancer. We saw five different specialists and got five very different opinions on how to treat my husband. We were lucky to get it when we did. My husband had an aggressive form of cancer we were told. My husband's PSA was 7.9 and I thought that was high, until I read your post. My husband's Gleason was 9. Do you know what your brother's Gleason number was? It sounds like your brother's cancer has spread to many arears of his body. I was so sorry to read that. This is a very informative and caring group. I hope we have all helped you in some way. If you ever need to talk you could always write to me directly or post here and I'll answer you. If you want my e-mail address just let me know. We will be here for you. You and your brother will remain in my heart and my prayers. Hang in there.

Sincerely,

Sheila

Prognosis

This is my first post. I would genuinely appreciate anyone addressing my problem. I'm very confused about my brother, Jack and his "situation" with stage 4, pros. cancer. Our family needs answers, and his oncologist is vague to the point that we don't know what to do. Jack is 54, and has brain damage resulting from an accident when he was a teen. He had 45 days of radiation, and within a few months the cancer spread throughout the skeletal system. He was referred to an oncologist around 6 months ago and began hormone treatment with a PSA of 2500. The PSA level went down to 350, and then up to 1500. He also takes Casodox(sp.) and failed to take the med. for 4 to 6 weeks. . (Could this have made the PSA rise this much?) The dr. says that if hormone tmt. fails to work or quits working that chemo. will be next. It is terribly frustrating to not know how to talk/interact w/ Jack, or particularly to plan for whatever future he has left, esp. considering his brain damage. I'm sure that the dr. is uncertain about what kind of info. Jack can mentally handle. I've talked to the dr. alone, he was very rushed and brief. He says that he has had patients "live for many years on hormone tmt., and also on chemo. tmt.". Jack weighs 145 lbs., down from 240 lbs. eighteen mos. ago, and claims pain that starts in the shoulder/ arm area , then radiates throughout. Jack lives alone for the past 5 years since our mother died, and has gotten along well despite his frontal lobe brain damage. Can anyone tell me more than the doctor will? How do I plan for him? What can I expect to be happening to him medically? Where can I find information that will address this stage of his everyday experience? I will appreciate any answers.

March 1, 2010

The PSA level went down to 350, and then up to 1500. He also takes

Casodox(sp.) and failed to take the med. for 4 to 6 weeks. . (Could this have

made the PSA rise this much?)

I think this is a key point here. The meds were working as intended, but a lapse

in treatment allowed the cancer to continue its march. I'd think he needs to

get back on the treatment as soon as possible and hope it continues its

effectiveness. Huge advances in treatment for advance PC so don't give up hope!

March 9, 2010

Hello Group,

Thanks for the warm and informative posts regarding my brother, Jack. I have

gotten more specific information so that hopefully the group will respond again

and I can find out of this will change his outcome. Jack was dx. w/ PCa 12 to 18

months before he did anything about it, I don't know what his Gleason Score was,

but believe that his PSA was 19, and that that DR recommended radiation. He was

around 52 years of age,and is now 55.5. Please recall that he has brain damage

from an accident as a teenager. When I discovered that nothing had been

done,and that he had rec'd no treatment whatsoever, I promptly got him to a DR

for radiation which he completed 12/08. Six months later in 6/09, he went to his

primary DR with arm pain, and scans revealed that the cancer had spread

throughout his entire skeletal system, including the skull. I took him to an

oncologist then who began treating him with Trelstar(in my first post I

erroneously thought that the hormone treatment was Lupron) injections every 3

months and Casodex 50mg daily. Here is the results:

.. He has received 3 Trelstar injections beginning 7/09, 10/09, and 1/10, and

will be receiving another this month.

.. Jack's PSA level was 2448 at the time of the first Trelstar injection in

7/2009, and each month from then until 2/2010, it has been: 649, 325, 403, 526,

1295, 408, 174.

Does his information change his prognosis, though I know that his PCa is

terminal? Alan, I so appreciated your post, and others, in that it gave me many

ideas of how to help him and also to be realistic about his future. I need

reality because his DR only smiles and tells him he's doing good, I believe that

the DR is concerned (I am, too)that Jack cannot take the truth in consideration

of his mental condition, but neither will he be frank privately. I would

appreciate anyone being as candid as possible regarding Jack's condition so that

I can begin to make plans to provide the best for him.

Very Sincerely,