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Old 01-29-2012, 09:59 AM   #1
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need help

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I am new to forums altogether.I have been diagnosed with metastatic prostate cancer which moved very fast from the prostate to the bones-hips,pelvis,spine,ribs,and they said the lymph nodes in my stomach.I have lost alot of weight and would like to have a written diet to build up my strength. The doctor at the va clinic has me on a shot of Eligard-to stop the testosterone,and tamsulosin hcl.Is this a hormonal treatment?I feel like they are going to slow with a fast moving cancer.Please any info or contacts would help.

 
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Old 01-29-2012, 11:38 AM   #2
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Re: need help

I'm so sorry to hear about your diagnosis. Yes, Eligard (leuprolide) is a hormone treatment. Tamsulosin is to help relieve your urinary symptoms. Eligard is usually given after Casodex (bicalutamide), an anti-androgen, otherwise it will actually make your symptoms worse before they get better by causing a testosterone flare. Firmagon (degaralix) doesn't cause a flare like Eligard does and accomplishes the same thing (testicular testostrone shutdown) faster.

If you want to get aggressive in fighting this, there are a host of new treatments -- some of which they usually reserve for when your cancer becomes unresponsive to hormones, some of which they can begin right now.

For right now for the bone mets, they can give you Xgeva (denosumab) or Zometa (zoledronic acid), which may help with the pain, prevent fractures, and even prevent new mets. Alpharadin, expected to be FDA approved this year, will help destroy them. They can give you radiation now on the larger mets to reduce them.

Vaccines may help your body fight off the cancer, but so far their use has been reserved for after hormone therapy begins to fail. It's possible they may work better earlier, and that's being tested now. Provenge is approved for PC and Yervoy will be approved for PC soon. There are more vaccines in the pipeline.

There are new hormone therapies too. Again, they are so far only indicated for after traditional hormone therapy begins to fail. Zytiga (abiraterone) has been approved; Ketoconazole has been used for a while; more coming soon. Tests of earlier use have begun.

There are many new chemotherapies, but they are also usually used only after failure of hormone therapy. Again, there may be advantages to using them earlier. Jevtana (Cabazataxel), approved last year, often works even after Taxotere fails. There are also many new medicines that can be used along with the chemo to help them work better or longer - Custersin, tasquinamod, Xeloda, Revlimid, etc. are among the helper drugs being used off label.

This list is far from exhaustive and innovative oncologists are trying new drug combinations at different points in time of the progression of the cancer in an effort to stop it or slow it down. If you're interested in getting aggressive, I suggest you find an oncologist at the VA who has the same mindset as you and is willing to work with you, possibly with off-label approaches or clinical trials.

- Allen

 
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Old 01-29-2012, 12:10 PM   #3
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Re: need help

Quote:
Originally Posted by seeker of truth View Post
[FONT="Comic Sans MS"][/FONT
I am new to forums altogether.I have been diagnosed with metastatic prostate cancer which moved very fast from the prostate to the bones-hips,pelvis,spine,ribs,and they said the lymph nodes in my stomach.I have lost alot of weight and would like to have a written diet to build up my strength. The doctor at the va clinic has me on a shot of Eligard-to stop the testosterone,and tamsulosin hcl.Is this a hormonal treatment?I feel like they are going to slow with a fast moving cancer.Please any info or contacts would help.
Seeker

Eligard and Tamsulosin are drugs used in hormonal treatment. Eligard is a LHRH agonist to lower testosterone levels in the body (chemo castration) and Tamsulosin is a alfa blocker to treat BPH (benign prostatic hyperplasia). Prostate cancer (PCa) feeds on testosterone therefore with less of the stuff circulating in the body the cancer is supposed to “die” by starvation. However, in advanced cases castration (no testis fuction) is usually not enough. Adrenal glands also produce a small portion of testosterone and aggressive forms of cancer learn how to survive in very low levels of testosterone.
In these cases double or triple blockade works better in avoiding the feeding. This is done adding an antiandrogen drug plus a 5-alfa reductase inhibitor drug. These will try to attach to the cells receptors closing its “mouth” and consequently the feeding.

Tamsulosin works to treat symptoms caused by an enlarged prostate gland. A 5-ARI will also treat BPH decreasing its volume.

In metastatic bone cancer, additional drugs should be included/added in the protocol. The most recent introduced in the treatment of PCa is a drug named Xgeva, which details you can find in the net (just type its name).

You need to share more details of your diagnoses in regards to the biopsy, PSA, Gleason score, symptoms, results from image studies, etc., if you want guys here to pass you their opinions. Some survivors are well educated in the matter and could give better answers.

You may check about clinical trials using the latest drugs. Trials are safe and give the opportunity of getting medications known to be successful in the treatment of advanced cases.
In this link you can search for what is available;
[url=http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=10091951]Clinical Trials Search Results - National Cancer Institute[/url]

In any case I would recommend you to get second opinions on your status from an oncologist specialized in prostate cancer. Your doctor should be aware of those trials but he may be “slow” because he may lack experience in the treatment of advanced cases. Your descriptions are for some one that really should “move” fast.

Welcome to the board.
Good luck in your journey.

Baptista

 
Old 01-29-2012, 01:43 PM   #4
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Re: need help


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Thanks battista!
the original psa was 10 with a crt bone scan on nov 11th showing little bone invasion. after failed syscostopy and a week later biopsey showed a gleason scale of 8,after another wees wait.started bicalutamide on dec.27th,eligard shot on dec.28th,then had a pet scan dec.30th.
Saw an oncologist after all this time on jan.16th who told me I had this metastatic prostate cancer stage 4, incurrable and sent me back the my urologist at the va clinic in fort myers fl.THE ONCOLOGIST is in va bay pines hospital,st petersburgh fl.I don't have any images or reports the va keeps me in the blind.I have to check out how to get these reports.
In the mean time I just trying to show you how fast this spread from negligible to all over my body by the first week in Jan. and I don't know how far now.I am lost and scared to death the right things are not being done.
SEEKER.......

 
Old 01-29-2012, 07:03 PM   #5
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Re: need help

Seeker,
What you're saying makes sense in terms of standard of care treatment for your stage. Hormone therapy - Eligard + bicalutamide - is exactly the right first thing to do with your diagnosis, so you should feel comfortable that you are getting the right care for now. The bicalutamide and Eligard should slow it down immediately and give you relief from bone pain.

If you decide that you want to be more aggressive than the standard of care about your treatment, it's really up to you to talk to your oncologist about it. They will probably treat you conservatively, unless you ask for more aggressive treatments, at least until the hormone therapy stops working and your PSA starts going up again. You can print out the list in my previous post to you about new treatments and ask your oncologist when to start them.

You can start treatment for bone metastases with Xgeva or Zometa right away.

The VA Hospital system has a reputation for great care, there are many good doctors in your area, and the hormone therapy you're now getting will give you enough time to talk to your doctors about what your next moves ought to be.

I'm wishing you an easier time of it.

- Allen

 
Old 01-30-2012, 06:00 AM   #6
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Re: need help

Quote:
Originally Posted by seeker of truth View Post
T[SIZE="5"][/SIZE
Thanks battista!
the original psa was 10 with a crt bone scan on nov 11th showing little bone invasion. after failed syscostopy and a week later biopsey showed a gleason scale of 8,after another wees wait.started bicalutamide on dec.27th,eligard shot on dec.28th,then had a pet scan dec.30th.
Saw an oncologist after all this time on jan.16th who told me I had this metastatic prostate cancer stage 4, incurrable and sent me back the my urologist at the va clinic in fort myers fl.THE ONCOLOGIST is in va bay pines hospital,st petersburgh fl.I don't have any images or reports the va keeps me in the blind.I have to check out how to get these reports.
In the mean time I just trying to show you how fast this spread from negligible to all over my body by the first week in Jan. and I don't know how far now.I am lost and scared to death the right things are not being done.
SEEKER.......
Seeker
We PCa survivors all have at one time experienced similar feelings; “....I am lost and scared to death the right things are not being done”, but you will do fine and understand once you get educated with the problem.

I agree with Allen. Your “short” description on your diagnoses all says that your doctor is following the principles for treating prostate cancer.
In two months you may feel better and see a drop in PSA. Surely this is not a cure and you will have to pounder on the matter again. In any case this will give you time to concentrate in a more detailed and targeted treatment.

For example, you will need to care for the metastases at bone. You surely need to get more tests to address other concerns with the treatment itself. Testosterone levels must be checked along with PSA and a Dexa scan should be done to look for any apparent osteoporosis. Hormonal treatments will cause bone loss and you have to get the bone healthier for future radiation.

Hormonal treatments cause low testosterone which by itself will drive you to probable hypogonadism. These circumstances may lead to heart problems and diabetes, so that it would be good to get now related tests (ECG, Lipids, etc.). The “goodies” is that we can control in advance any effect with changes in our life style and diet. Physical fitness is a must get thing when on hormonal treatment.

Still I recommend you to do some researches in the net and get second opinions from more than one oncologist.

Do not be anxious. You will beat the bandit.

Baptista

 
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Old 01-30-2012, 08:52 AM   #7
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Re: need help

Hi Seeker, and welcome to the Board!

Ive read your posts and responses through post #6 from Baptista. Allen and Baptista have already given you much key information. Here are some additional thoughts, based on my experience of more than 12 years with my own challenging case (though not so challenging as yours).

As Allen noted, you are already getting the standard-of-care hormonal therapy, also known as "androgen deprivation therapy" (ADT), in your case ADT2 since you are on the heavy-duty drug Eligard and the medium duty drug bicalutamide. The expert doctors in ADT whom I have followed over the years would make sure your blood tests included both testosterone and DHT (dihydrotestosterone). DHT is made by the body from testosterone and is a far more potent fuel for the cancer. Sometimes the shot does not adequately suppress testosterone; the experts are convinced it needs to drop below 20. If it does not, they will first make sure that it is being administered properly and then may take steps like decreasing the interval between shots.

Some men, actually many of us, make a fairly large amount of DHT that does not drop sharply when testosterone drops. When that is the case, the experts will add a third drug in the 5-ARI class, which Baptista and possibly Allen also mentioned, either finasteride or frequently the more powerful Avodart. These drugs drastically reduce the conversion of remaining testosterone to DHT. Among other things, that helps the bicalutamide work better because it can compete better to enter the PC cell docking sites for fuel, thereby blocking them. ADT3 (Lupron - which functions like Eligard, bicalutamide and finasteride or Avodart, plus bone density drugs) has been my therapy over the past 12 years - no surgery, or radiation, yet.

I'm convinced it is very important in a case like yours to get the testosterone and DHT tested; if they are not low enough, I'm convinced it is very important to add the Avodart (or finasteride).

Dosing of bicalutamide is also important. How much are you taking? It is given in 50 mg pills, and my layman's understanding is that at least 150 mg would usually be prescribed to a man with metastatic cancer. The new drug Abiraterone (Zytiga) would probably work even better, but its a fairly new drug and its approval does not cover men unless ADT no longer works for them. (However, it might be available to you under what are called "off-label" prescription procedures.)

I strongly endorse what Allen posted about bone density, as well as the bone density scan that Baptista mentioned in #6. The qCT (quantitative CT) scan is an alternate bone scan that works better if men have arthritis or calcification of the blood vessels. (Source: "A Primer on Prostate Cancer - The Empowered Patient's Guide," Strum and Pogliano)

You noted your weight loss. ADT may reverse that. Weight gain is an issue for most of us on ADT, typically 15 to 20 pounds. However, due to your challenging case, you may still need to work on keeping weight up. Fish oil capsules can help, and also help protect the heart and cardiovascular system. (Sources: "Hormonal Therapy & Diet", Myers, and books by Moyad) Thalidomide, a drug I'm now taking, also helps keep weight up in many cancer patients, but it is expensive and probably would not fit your case at the present. Most of us PC patients do not need to be concerned much with sugar, as PC usually uses primarily fat for its energy. However, in cases like yours, PC also often uses sugar for metabolism.

The Prostate Cancer Research Institute (PCRI), a non-profit organization, has publications on many topics that may be of interest to you.

Keep your spirits up and good luck,

Take care,

Jim

 
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