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advanced stages of prostate cancer no cure

1976rag
Posts: 3
Joined: Oct 2011

My husband was told two weeks ago that he has advanced stages of prostate cancer. He has had a bone scan which shows cancer is in his bones throughout the skelton but mainly in his pelvis. His PSA is in the 4,000's yes 4,000's his prostate is very hard. We have been told that no radiation or chemo can be done since it is in his bones. He started hormone shots last week and will get them once a month. The doctor said that he should be in pain all over but, luckly he is not other than his back giving him problems which he relates to from driving a big truck for 25 years before retiring. We have a appointment at the Moffitt center next week for a consultation hopefully they might can do more than the shots and have more than a couple of years of life. But, every day we have is a blessing!

Any other suggestions that we might do or look at?

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Kongo
Posts: 1167
Joined: Mar 2010

So sorry to hear of your husband's diagnosis. As you seem to understand, there is no cure for prostate cancer at this stage. Hormone therapy will likely bring down the PSA significantly which is an indication that the HT is slowing the advance of the cancer. Radiation to the bones is often used as a palliative effect and can help with the pain.

While the diagnosis seems bleak at this point, many men with advanced prostate cancer survive several years. I do hope that your follow-on consultations offer you some hope. You should ask them about a new drug that has recently been approved, called Provenge, that may be effective in your husband's case.

Just curious, but was your husband having annual physical exams where his PSA was measured and and a rectal exam performed?

Best of luck to you and your family.

K

1976rag
Posts: 3
Joined: Oct 2011

Thank you, when we go to the Moffitt center I will ask about this new drug you are talking about.

Unfortunately not, I don't even know the last time he had an exam and to my knowledge he has never had blood work for his PSA before.

He had a heart attack 3 years ago and has been really good about taking better care of himself after that scare and even quit smoking and everything seems to be ok with his heart. Now another battle that we hope to overcome.

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lewvino
Posts: 1004
Joined: May 2009

As mentioned by Kongo we welcome you to our little corner of the web and sorry to read about your husband. There are many that have had high PSA and with hormone treatments have added years to their lives.
Some have even looked into dietary changes. You might want to research more on lifestyle changes.
Best wishes to both of you as you continue the battle.

lewvino

1976rag
Posts: 3
Joined: Oct 2011

It is nice to have a place to talk with others that have the same life challenges that they are dealing with everyday. I have been reading anything and everything I can about this cancer and different types of foods to eat and not to eat. We just have to stay strong and positive for each other as we continue in the battle for life.

Noniu
Posts: 45
Joined: Apr 2010

My dad has advanced prostate cancer with mets. He refuses to do Chemo. He was not a candidate for Provenge. Had seed implant 10 years ago, cancer returned in 2009, last April had radiation on his cervical area. None of the medication to lower his PSA have worked. He is in a wheelchair, neuropathy of his left leg, cannot not walk. Pain on his cervical is back, and has pain on his legs that radiates from his feet to his lower back. Today he is going for CT Scans and MRI's. His Oncologist recommended a new drug called Zytiga(Arbiraterone), it has been approved, Friday we will know when he is going to be on it.

Please, go see an Specialist as soon as possible, there are medications that will control the cancer, every case is different. The medications that did not d work for my dad might work for your husband. Do not give up, new medication are becoming available. Best wishes.

Noniu

mrspjd
Posts: 688
Joined: Apr 2010

76,

From one wife to another, welcome to the PCa forum. So very sorry to read of your husband’s advanced dx. I applaud your fighting spirit and, if anyone has the right attitude and perspective about this insidious disease, it’s you and your husband. Your positive attitude and outlook set an example for the rest of us, men and women alike and, it will play an important role in your journey together and how you cope with the challenges ahead.

Today, with so many new drugs and txs for advanced disease available (and more in the medical pipeline), metastatic PCa (mPCa) is sometimes looked at as a chronic disease that can be tx’d palliatively, not necessarily “cured” (sort of like diabetes). For most men dx’d with advanced mPCa, it does not have to be a death sentence. While there are side effects from virtually all txs for any PCa stage, there are also serious side effects (and fatal consequences) if no tx at all is elected for mPCa (as others have shared in previous threads). Often the issue of quality of life vs quantity of life is discussed. IMHO, you don’t necessarily have to choose one over the other—-I believe there can be a balance of both quality AND quantity based on your and your husband’s highly personal priorities, choices and decisions.

Right now, the best medical doctor for your husband will be an oncologist who specializes in PCa and is up to date on the latest, newest txs for mPCa. Initially, ADT (Androgen Deprivation Therapy aka hormones, TIP, etc.) will be used to help reduce and shrink tumor cell volume and bring down his PSA. Chemo may also be an option proposed with the ADT depending on your husband's case. There are many types and combinations of hormone drugs used in the tx of advanced PCa. Last year, Dr. Mark Scholz, a well-known PCa oncologist, gave a presentation titled “Treating Advanced Prostate Cancer.” A 90 minute video was made of that talk. The video may be a little outdated (i.e., Abiraterone is now FDA approved and called “Zytiga” www.zytiga.com), but it’s still a good educational resource. Here’s the link: http://tinyurl.com/2b6ekgu (Thanks to the Prostate Cancer Forum of Orange County, CA, for making the video available online as well as other PCa info videos accessible, via their website to anyone interested.) One of the online educational website resources we found helpful was http://www.prostate-cancer.org/pcricms/node/34

In addition to ADT drugs for mPCa, another important newer drug that appears to mitigate bone mets is Xgeva. Please ask your PCa onc if this is appropriate in your husband’s case and why or why not. Read, research, read more, attend established face to face PCa networking groups that have trained professional facilitators and welcome women and partners where you can personally speak with survivors and ask questions. A heart/prostate healthy diet and exercise plan (as simple as short daily walks, if he is able), pre-approved by his doctor, will benefit both of you mentally as well as physically.

Along with your husband, become an educated patient-active team. Knowledge is power and a PCa education is empowering and required for you both to be advocates for his heathcare on this journey.

The best “advice” I received when our PCa journey began last Feb 2010 was from a good friend whose teenage son (now an adult) fought, battled and survived a rare form of bone cancer (he is one of only a handful of survivors of this cancer worldwide). She said “In all this cancer $h!t that you will have to deal with, you will discover small unexpected and wonderful gifts along the way.” Over a year and a half later, I now understand what she meant. No matter how your journey plays out, I hope you, too, will discover those small unexpected gifts. In fact, with your attitude, I know you will.

All the very best,

mrs pjd (wife of a survivor, T3 stage)

johnnysmom
Posts: 1
Joined: Oct 2011

Hi. Thanks to all who post with questions and answers on this site; it is very helpful. Today, my Dad, who just turned 75 on 10/2/11,got the results of his CAT scan and bone density test today. He was told that he has a gleason score of 9 but fortunately the cancer has not spread beyond the prostate. He has a pacemaker, has diabetes, and takes coumadin, so surgery is not an option. He, my Mom, and his doctor have opted for estrogen hormone therapy and some radiation therapy. My Dad is a man's man if there ever was one, so the thought of being on estrogen is probably bazaar to him. It appears that most survivors recommend that Dad get a second opinion or change to an oncologist who specializes in prostate cancer. My sisters, my Mom, and I need to be able to talk about this to each other and with him. We need to all be supportive of each other and not pretend it doesn't exist. I think I'm still in shock, but I know the truth will sink in over the next few days. I hope my parents approach this journey with as much faith, hope and strength as many of those who have posted on this site have. If anyone has any specific drugs, therapies, treatments or anything that could help him, considering his other health conditions and age, please let me know. Thank you so much, and hugs and prayers go out to all of you and your loved ones. Johnny's Mom

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lewvino
Posts: 1004
Joined: May 2009

johnnysmon,
So sorry to read about your father. A gleason 9 is a different beast to fight then some of us have. I know being a man some of the things your dad will be faced with will be difficult. Give him the support he needs. Do you have a local prostate cancer support group in your area? THat might be of comfort to your father to talk to other men going through the same treatments, thoughts, side effects. etc.

I would would also recommend getting that second opinion and work with an oncologist that does specialize in prostate cancer.

Keep us posted.

lewvino

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Johnny

I am sorry about the diagnosis of your father. I would recommend him to get assistance from an oncologist specialist at target medications for prostate cancer. Your dad’s health history with diabetes and heart conditions is in fact problematic in the treatment for prostate cancer, particularly with ADT (androgen deprivation therapy). Patients on Coumadin or any other anticoagulant need constant vigilance on the interaction between drugs taken for the cancer treatment or for the treatment of their side effects.

You have not mention about the results from tests and biopsy, such as the PSA, DRE, PAP, number of positive cores, etc., which are necessary to identify your dad status. Gleason score 9 is of high risk for recurrence but with a negative bone scan, there are probabilities for a localized case. Radiation therapy is a good option and there are many guys of Gs9 group who responded well to the treatment.

I could not understand your description about the estrogens therapy. Do you mean a drug called DES (Diethylstilbestrol) ?
DES was the treatment of choice in the 80-90Th before LHRH agonists. It is still used by some doctors in low doses for the treatment of hormone resistant cases. The drug's aim is of suppressing the production of testosterone (chemical castration); however, estrogens (female hormones) have been associated to increased blood clotting, which is not recommended to patients with vascular or heart problems.

I do understand your dad’s “man's man” sentiment. The good about hormonal drugs is that one returns to normalcy once the treatment is over. You can read details on the HT procedure by typing this sentence in a web search engine; “castration for treatment of prostate cancer”.

I would recommend you to get a copy of this book; Beating Prostate Cancer: Hormonal Therapy & Diet, by Dr. Charles “Snuffy” Myers, which informs on diagnosis and treatments (hormonal and advanced therapy). This famous oncologist specialized on PCa is himself a survivor of a challenging case on his 12 year of survival.

Another book that may help you and your dad when visiting doctors is; 100 Questions & Answers about Prostate Cancer, By Alan J. Wein, Pamela Ellsworth. This can help you in preparing your own list of questions.

Wishing your family peace of mind.

VGama

tspoon
Posts: 22
Joined: Aug 2011

My husband was diagnosed march of this yr with stage 4 pc, cancer in bones, lungs, marrow, nodes, and a psa of 1913. Today, his blood is in all the middle of all the normal ranges, scans last week show no growth since last march, psa .5. Can testify that xgeva monthly, along with ht therapy every third month works. He is virtually pain free, for the first time in yrs, (Yes yrs, being a household mover for 30 yrs he wrote off all his pains to that. Never dreamed it was cancer growing.) He is 59, and i can say that my husband was always a good man, and this has made him a better man. Being this bulky shouldered man his whole life, ht has not been easy for him. He is growing breast, he has hot flashes, (we call it menopause sympathy), and is highly emotional, and he only uses his organ to pee. I should mention his gleason is 4+5, we know recurrence in the growth is gonna happen, but we do this one day at a time, and hope for more options in research as he needs them. Prayers for you and your family, and will be watching your progress.

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

I am glad to read your post. It is wonderful to read about successful treatments.
I wish you and your dad continuous control on the cancer and hope for a remission.

VGama

cwhalen
Posts: 4
Joined: Oct 2011

My husband, who is 87 years old, was diagnosed with Stage 4 Advanced Prostate Cancer in November, 2008. He has had Lupron injections every 4 months and took Casadex for several months until it no longer was beneficial. Luckily, he has tolerated the injections with only moderate hot flashes. Now his psa is beginning to rise and is at a 0.82 level. We saw an
Oncologist Urologist today and we are looking into the Provenge treatment. This doctor just came from New York where this treatment was on trial and the results were very good. It depends on a person's overall health and other health problems one might have. We are digesting all this information and then will decide what to do. We will report back to this doctor in 3 weeks. If we decide to go forward, it will take 1-2 months to get everything in place; insurance coverage, setting it all up, etc. Overall, we left somewhat optimistic. The only other option at this point is chemotherapy and that is can be very toxic. We would appreciate any comments on Provenge and on anything that pertains to this disease.

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VascodaGama
Posts: 1511
Joined: Nov 2010

Cwhalen

Reports on Provenge are few in this forum. You can read comments from some survivors in this two links;
http://csn.cancer.org/node/224218
http://csn.cancer.org/node/201399

You have not share info on the chronology of PSAs of your husbands’ case but 0.82 does not seem to be high for a patient on hormonal treatment. Withdrawing from Casodex (anti-androgen) is done when one becomes refractory and cancer starts feeding on the drug itself. However, such patients usually follow a second line of hormonal drugs like Abiraterone acetate (Zytiga) before advancing with other therapies. Your husband could discuss with his doctor about alternatives before starting Provenge.

You can listen to videos from the famous oncologist Dr. Charles Myers with regards to details on Provenge, Zytiga and other newer drugs, and the control of advanced cases similar to the situation of your husband; just “navigate” in this site;
http://prostateexperts.com/category/provenge/

I understand about your husband’s concerns in regards to the side effects of chemotherapy, but newer drugs have shown benefits with lesser side effects. One is called Jevtana (carbazitaxel). You may research about the particulars typing the name in a net search engine.

I would recommend you to get a copy of this recently published book “Beyond Hormone Therapy – Options for Prostate Cancer Patients” by Dr. Mark Moyad (just got my copy). This is a good reference book for standard and newer drugs to control prostate cancer (it includes Zytiga and Jevtana). There are details on the second-line hormonal treatments still in trial and references to immunotherapy drugs as well as chemo-like drugs, which your husband may find interest in reading.

Hope you find help in these links.
Welcome to the board.

The best to you.
VGama

cwhalen
Posts: 4
Joined: Oct 2011

Thanks VGama for the prompt reply. My husband's PSA was 44 when he was diagnosed in November, 2008.. His first injection of Lupron lowered it to 0.75. It continued to go as low as 0.25 in January, 2011.
Since then it has slowly crept upward until it reached 0.82 in September 2011. His recent Cat Scan and Bone Scan show some areas of cancer in his bones have shrunk while there are several new areas with cancer. He has no major pain at this point. I may be wrong, but I'm wondering if some of these second-line drugs require having taken chemo before trying these. Chemo frightens me as we just lost a son to brain cancer a year ago. He lived for 15 months after diagnosis and the chemo side effects, finally did him in. We are thankful for all the advice you can give us.

cwhalen
Posts: 4
Joined: Oct 2011

Thanks VGama for the prompt reply. My husband's PSA was 44 when he was diagnosed in November, 2008.. His first injection of Lupron lowered it to 0.75. It continued to go as low as 0.25 in January, 2011.
Since then it has slowly crept upward until it reached 0.82 in September 2011. His recent Cat Scan and Bone Scan show some areas of cancer in his bones have shrunk while there are several new areas with cancer. He has no major pain at this point. I may be wrong, but I'm wondering if some of these second-line drugs require having taken chemo before trying these. Chemo frightens me as we just lost a son to brain cancer a year ago. He lived for 15 months after diagnosis and the chemo side effects, finally did him in. We are thankful for all the advice you can give us.

VascodaGama's picture
VascodaGama
Posts: 1511
Joined: Nov 2010

Cwhalen

Please accept my condolences to the death of your son. Your family may be devastated.

I do understand your concerns with chemotherapy but regimens are different among different cancers.
I am not a doctor but a survivor with eleven years of researches and studies on prostate cancer, since being diagnosed. My opinions are that from a layman’s point of view. You should get a second opinion on your decisions from two oncologists. I know that a situation similar to your husband requires care by a specialist in targeted medications. Drugs interact with other medicines for other illnesses and need constant monitoring, particularly in elderly patients.

It is common practice by oncologists to increase dosage of drugs or add other drugs to the “cocktail” when a patient demonstrates refractory. The hormonal treatment your husband has been following with Lupron and Casodex have been successful in the past three years (demonstrating that his cancer response well to HT) and it may continue doing so simply by changing the protocol.
Distinguished specialists such as Dr. Myers, Dr. Strum, Dr. Scholz, etc. in prostate cancer, report in the need of increasing the dose of anti-androgens or changing drugs (ex; Casodex to Androcur, etc.), or still adding more drugs, to successfully control the advance of the cancer, once patients show the first signs of refractory (HRPC). This is in my opinion the precise status of your husband with the slight increase in PSA.

Dr. Myers usually increases bicalutamide (Casodex) to doses of 150 to 200 mg daily, and such gets good responses from the patients, without increasing the side effects. It is also common practice to add a 5-alfa reductase inhibitor drug like Finasteride or Avodart making it what is called; Total Androgen Blockade (ADT3). He likes to keep his patients in “remission” (levels of PSA =<0.01) and monitors the condition manipulating dosage and drugs. Surely all vital indicators regarding liver function, blood count, etc., are checked to avoid any other risk.
To this blockade doctors add a bisphosphonate to combat metastases and bone loss. Zometa is known to reverse the effects, and this year FDA has approved another drug named Xgeva which proved to “kill” cancer in bone.

Many patients do well with certain drugs and many do not, but the important is to try, be confident, and change them accordingly.
Drugs are administered based on FDA approval; however doctors with many years of experience in treating PCa use them sometimes in combinations and modalities different from what pharmaceuticals recommend. Zytiga has shown to be an excellent substitute for Casodex when taken with Lupron (this will be my future protocol), and it extends survival free biochemical recurrence over 3 years in trials. Nevertheless this is a drug approved to guys who have failed docetaxel (Taxotere), a chemo drug for prostate cancer. Provenge got approval for HRPC patients who failed HT; however specialists use similar immunotherapy drugs which have been in “action” for many years in the treatment of PCa namely; Revlimid and Leukine (these are second-line HT drugs which can be taken before or after chemotherapy).

I recommend you to read Dr. Myers’ book “Beating Prostate Cancer (Hormonal Therapy & Diet)” which relates very must to the conditions of your husband. You can listen to his videos at the site I indicated in my previous post above and you can use the net to get details on the drugs’ side effects and recommendations.

In PCRI insights there is an article published in 2005 (somehow old but still very evident today) which describes about the “Newer Concepts in the Treatment of Hormone-Refractory Prostate Cancer with Bone Metastases”. Surely some more recent protocols exist where the newer drugs (Provenge, etc.) take place. Here is the link;
http://www.prostate-cancer.org/education/highrisk/Sartor_HormoneRefractory.html

I hope my insights are of help to you. Please ask if you need details.

Wishing you peace of mind.

VGama

cwhalen
Posts: 4
Joined: Oct 2011

You have been very helpful to our family with your information. We will be buying the book you recommend and also, seek second opinions. Mayo Clinic in Rochester, MN, about 70 miles away, might be a good place to start. Thank you for valuable insights.

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