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genemyers's Message Board Messages

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RE: 47 yr old,psa of 64

by genemyers - Friday at 5:14 AM

Sorry about your husbands condition. I would not freak out yet. Prostate cancer is different than most other cancers in that it can be slow growing. Men can live with prostate cancer (even with Gleason 9) for 10+ years or more, even with T3 disease, depending on the extent of the disease when found and with good treatment. There are several new drugs out on the market that have extended the lives of these men.

Aggressive treatment would depend on what scans your husband had and what tests tell your doctors that the cancer is outside the gland. Did he have a biopsy to the seminal vesicles or the lymph nodes? Did they do scans that saw the cancer outside the Gland? What percent of the biopsy samples had cancer in them? Did your doctors tell you there will be treatment to be added with the hormonal therapy? If so, what? I am assuming your husband has not had surgery. Depending on the answers to these questions aggressive treatment might be radiation plus hormonal therapy; or surgery plus radiation plus hormonal therapy. Realize Hormonal Therapy just by itself is palliative and not curative.

Do not freak out but try to seek out information and learn about the disease and the stage of disease and you will be more effective in working with your doctor for the best possible outcome.

Would agree with the above comment to get second, third opinions.

Gene

RE: Fluctuating PSA

by genemyers - August 20 at 3:23 AM

Thanks for the clarification.

Have not really heard many people speaking about NanoKnife, but I know it is available in the US.

Gene

RE: Fluctuating PSA

by genemyers - August 15 at 4:01 AM

Charlie:

I am in the United States. I had surgery for my cancer. Before my treatment I had BPH urinary symptoms. The surgery itself brought with it a certain degree impotence and incontinence. 

In the United States it is very common to treat Gleason 8-10 with radiation with or without ADT. Using this approach generates good results. I guess there is just a cultural difference between the two countries as to how to treat in this situation.

In the United States most treatments are covered almost entirely by Medicare or insurance. Medicare pays the treatment provider directly. It seems like in Australia that you pay out of pocket first and then you have Medicare/insurance reimburse you a portion of what the treatment cost. It seems like the patient is paying for most of the treatment cost out of their pocket. Thank you for clarifying this as I had no idea that this was the case.   

Thank you for clarifying my comments on symptoms. Prostate cancer usually causes symptoms at the point that it metastasis to the bone and causes bone pain. I kind of used an arbitrary psa of 100, but the psa when metastasis occurs can vary and be a lower number. Thank you for clarifying. 

Prostate cancer can also press against the urethra and cause urinary symptoms, but more commonly the causes of these symptoms are BPH. BPH is common in men in this age group. I had BPH and prostate cancer. I had trouble urinating, burning, getting up at night multiple times, etc., the symptoms you mentioned, but the cause was BPH and not prostate cancer. Urinary symptoms can also be caused by radiation treatment. 

I would suspect that the men you mention in your group who had an operation or brachytherapy are having incontinence problems as a result of the treatment, not the cancer itself.

Sexual dysfunction is common in men in this age group, even without prostate cancer. Sexual dysfunction can be caused by surgery or radiation, or hormonal therapy, but generally not by prostate cancer. 

You seem to be on top of your treatment and disease. Best wishes.

Gene

RE: Stage iv prostate cancer

by genemyers - August 13 at 4:20 AM

A little more information would be helpful, if you have it. What is your fathers age? I assume you do not have a Gleason score, but if you have it that would be helpful too.Does your father have any other serious health problems, or is he very healthy?

I assume that the scans showed the cancer shrinking, since you said he had 2 spots in his spine a year ago, and now he has one spot, so the cancer on the scans has been reduced.

This is a complex case and the single best advice I would give to you to extend your father’s life would be to have him go to a major teaching hospital or comprehensive cancer center in your area for a second opinion. 

Your father needs to have his doctors respond to the side effects of the treatment. The doctors need to treat the side effects, in addition to the cancer. A long life is not enough if the quality of life is poor. Lupron and Casodex can have many side effects, but most of them are treatable with drugs, supplements or other interventions.

In May of 2015 the Chaarted trial showed that for metastatic disease an average 22 month survival advantage was achieved by giving Taxotere plus Lupron vs. Lupron alone. This was big news and it immediately changed clinical practice in the United States to Taxotere plus Lupron. 

Your father could get Provenge. Provenge is an immunotherapy with small side effects. It charges the immune system to fight the cancer. The FDA approved Provenge as it has been proven in a phase 3 clinical trial to extend survival.

Stronger combinations to talk to the doctor about and consider would be to replace the Lupron with Degarilex and replace the Casodex with Xtandi. These are newer class drugs. Xtandi is a stronger anti-androgen than Casodex and there is some evidence that Degarilex may be better than Lupron in advanced patients.

Although controversial, there are some indications that denosumab is more effective than Zoledronic Acid (Zometa) at preventing bone mets. A discussion with the doctor to switch might be in order.

If his psa starts to rise, or there is radiological progression, the next step might be to switch to Zytiga, or to try Xtandi, if he is not already on Xtandi.

Supplements I take for my cancer is curcumin, Vitamin D3, Pomegranate, Resveratrol and metformin (not a supplement) along with a mediterranean diet.

Best wishes.

Gene

RE: Fluctuating PSA

by genemyers - August 12 at 3:07 AM

Charlie:

I firmly believe that each man should make their own decision about what to do, or not to do with their body if they have prostate cancer.

If you get second opinions get one from a medical oncologist and one from a radiation oncologist. Options for treatment should include surgery, radiation (various types), hormonal therapy, combo radiation and hormonal therapy, cryosurgery, and maybe HIFU. 

Not sure about the surgery price tag, I would assume that Medicare or insurance would cover it?

Usually there are not symptoms with prostate cancer, until the psa gets into the 100-500 range. You should not be having any cancer symptoms of any kind with a psa of less than 20. 

The issue you have (from the doctor’s perspective), is that Gleason 8 is aggressive and in their eyes you are not doing anything to stop the spread of the disease. What the doctor is worried about is with Gleason 8, the cancer might spread and becoming metastatic. 

Except for your 13.52 psa reading, the psa is otherwise trending up. The last reading of 17.66 is not a fluctuation but an increase over your 12.21 October value. This is consistent with growing cancer, and I would be concerned about it. With a psa going from 12.21 to 17.66 I would say the programs you are on does not appear to be working.

Only you can decide about what to do about this. Nobody can say what will happen in the future but just to give you an illustration, with a 2 year doubling time and if the current trend continues, the psa would be about 38 in two years, then 72 in 4 years and 144 in 6 years. If this trend continues, and nobody knows if it will, but if it does at around 4-6 years of this trend you might start having symptoms. At that point the doctors would not offer you surgery or local treatment and offer systemic treatment which are drugs. 

With you being in perfect health, any doctor that you go to, with your psa and Gleason score, is going to recommend some type of immediate treatment.

Only you can say if your present course is working for you and only you can decide if you get conventional treatment now, or not, or wait and get treatment later, or not.

Gene

RE: XTANDI

by genemyers - July 29 at 3:39 AM

Yes.  If side effects are troubling, doctors will often reduce the doseage and doing that will often leave the psa close to where is was and will reduce the side effects considerably.

Also men will go on "hormonal holiday" like they do on Lupron.  That is where you take a break from the drug for a while and keep getting psa tests.  The psa will eventually start back up again, and it is then up to your doctor and you to decide at what point to restart the drug.  You can keep recycling on and off the drug as long as it is effective.

If your husbands psa has been low for several months I would talk to your medical oncologist about both of these options, and pick one.

Best wishes

Gene

RE: Xtandi and Zytiga

by genemyers - July 24 at 3:38 AM

When fatigue with Xtandi is a problem, I have seen doctors lower the dose and there can still be a therapeutic effect on the lower dose but the fatigue is much more tolerable. If you can modify Xtandi and stay on it a little longer, with reduced side effects, I think that would be a good option.

There are drugs and treatments for fatigue that you might talk to your doctor about trying. The best ideas I have found are Nuvigil, Provigil, or methylphenidate.

It seems counterintuitive but weight training (if you can get out the chair or out of bed) is very effective for fatigue. Please get a doctor approval for exercise first if you have mets.

There is a lot that can be done for weight loss and to stimulate appetite. It is important to maintain weight to be as healthy as possible during these treatments. If medical marijuana is available, then pursue that or get some THC. There is also a Rx drug that has THC called Marinol (dronabinol). Other drugs to talk to your doctor about to fight weight loss and stimulate appetite are Megace, Medroxyprogesterone Acetate, and steroids (if he is not already getting a steroid). I forcefully reject the notion that the only thing that can be done is adding Estrogen.

If your husband does not have visceral metastasis, then Xofigo (Radium223) is another option to treat the cancer before considering chemotherapy. It is an injection and specially targets the metastasis in bones. Another option before chemo is estrogen, or DES, or transdermal estradiol. This is a milder form of cancer therapy than the others and may or may not work for your husband. The normal side effects are breast tenderness and breast growth which can be dealt with ahead of time by the doctor. Oral estrogen usually mandates combining it with Coumadin as a blood thinner.

Another option before chemo is a clinical trial. It will take some guidance from your doctor to help you pick the right one. 

Also, I assume your husband is on Denosumab for bone integrity and to forestall skeletal related events.

Hopefully you are not doing all of this with a Urologist. Urologists are trained surgeons, and medical oncologists are internal medicine doctors with additional training on chemotherapy drugs. If not already, you should transfer care to a medical oncologist. I would get two other opinions of your case from medical oncologists, and if possible go to a large cancer research hospital in your area or a National Comprehensive Cancer Network institution. The estrogen comment has kind of got me wondering if you are getting optimal care.

Consider getting the book: “Promoting Wellness, Beyond Hormone Therapy, by Mark Moyad. This book will give you more ideas of what to do. This is an excellent book with lots of supplements and ideas for patients that are dealing with some of the advanced prostate cancer drugs side effects.

Best wishes.

Gene

RE: High PSA Levels

by genemyers - July 22 at 3:34 AM

You cannot know what stage the cancer is in unless you do imaging scans and/or biopsy. But it is probably a pretty good guess that the cancer is outside of the prostate, with some cancer in the surrounding area.

This is not an unreasonable decision given your father’s age. A big factor is how healthy a 90 year old is he? You said he is in decent health. Does he get up and around on his own? Does he have a lot of other diseases that he is battling? How old do men in your family usually live? Is he likely to live another 10+ years? I would assume these factors have already been taking into account by his doctor to come up with the decision, but you can ask his doctor these questions and how he made the decision.

Prostate cancer is normally slow growing, even if it is outside of the prostate. With a gleason 6 or 7 cancer, your father is likely to die of something else. With a Gleason 8-10 however, the cancer will be more aggressive and might be of some concern. However, the doubling time from 52.89 to 62.11 is about 2.1 years, which is indicative of a non-aggressive cancer of 6 or 7 gleason score, so this would support the decision to watch and wait.

Ask the doctor what the risk is for a 90 year old to have a biopsy, because that is one way to determine what the gleason score is. If the doctor thinks that your father is at risk from dying from the biopsy, then that is a reason to avoid it. Normally a biopsy caries a small risk of infection, and that too may be a reason to avoid a biopsy in a 90 year old. 

What your doctor is doing is called watchful waiting. Watch the psa and any symptoms, and give palliative treatment if and when the cancer advances. The cancer might not advance enough to cause problems, so no treatment would be given. 

It is probably a reasonable decision as your doctor can watch the psa, and if and when your father has symptoms, your doctor can give Lupron/Casodex to lower the psa and keep the disease in check for many years. These drugs have their own side effects however, but watchful waiting is a somewhat conservative approach to the situation, and my guess is that it is the right answer.

RE: High PCA

by genemyers - July 04 at 2:05 AM

Your psa of 21 is kind of high, but it is possible that you have prostatitis or BHP which are non-malignant conditions.  Do you have any urinary symptoms?

The urologist will want to immediately do a blind biopsy to see if there is any cancer.  Even if there is some cancer it is usually very slow growing and there are many (to many) treatments.

I would say that there is a 99.9% chance that the WBC count and the tiredness are unrelated to any prostate condition that you may have, benign or otherwise.

It would be important to keep getting periodic psa tests as one test result is not as important as the trend of the psa tests over time (called the psa doubling time), which really can give you a good indication of what is going on.

There are other forms of biopsies (targeted) other than the blind biopsies that are so prevalent.  If you are interested you can look into these less common but newer procedures.

Do not worry about this too much.

Gene

 

The psa seems to have stabilized while on Zytiga (since April 2015). Hopefully you will start seeing the psa go down. Might want to continue with the Zytiga for a while to see if it brings down the psa.  Ask your doctor how long to wait to see if Zytiga reduces the psa. Has your father been feeling better since on Zytiga (another indication it is working)?  Are there more bone/CT scans scheduled to compare current status to the last scans before Zytiga?

If the psa starts going up or future scans show progression, a change in medications is needed.

What to switch to depends on how your father is feeling. Is he active and mobile and otherwise in good shape? Or does he have a hard time getting around and appears weak? These are important questions to answer because Taxotere chemotherapy would work but it tends to beat older frail men up with each round of chemotherapy. Taxotere will reduce pain the fastest, but it is harder on the man in terms of side effects.

Xtandi would be the alternative, especially since your dad had Casodex and appeared to respond well to it. Xtandi tends to be easier on the patient than Taxotere. 

You can take Taxotere after Xtandi and Xtandi after Taxotere. Either of these treatments can be started, and then if it does not work or the side effects intolerable, the treatment can be stopped and then switched.

Another thing that can be added is that they can do spot radiation to the bone for pain. This is palliative only and not curative. 

After Taxotere there is also Jevtana (cabazitaxel) chemotherapy as an option. 

A lot depends on how your father is feeling and what are his wishes.  These drugs can be very hard for a man to tolerate and some men decide to skip the treatment  in order to avoid the side effects.  Just realize that your fathers wish might be for no further treatment.

Radium 223 (Xofigo) is not recommended in the United States because it is only for bone mets and is not indicated when there is also known visceral metastatic disease, which your father has.

Hope this helps you.

Gene

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About genemyers

Patient
Prostate Cancer
Alternative Treatments, Chemotherapy, Diagnostic Imaging, Diet, Hormone Therapy, Radiation, Side Effects, Supplements, Surgery

RP for prostate cancer; Currently monitoring Ca status with psa tests, have undertaken diet changes and supplements to keep Ca in check. Interested in current diet and supplements that suppress cancer.

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