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genemyers's Message Board Messages

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RE: XTANDI

by genemyers - Wednesday 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

RE: Possibility of PC

by genemyers - June 22 at 2:54 AM

A lot of it depends on your overall health condition.  Are you a robust and healthy 76 years, active, with no other diseases or conditions?  Or do you have other health conditions, which likely will limit your life before any potential prostate cancer does?

The American Society of Clinical Oncology recommends that patients do not perform PSA testing for prostate cancer screening in men when they are expected to live less than 10 years.

The reason is that these men are very likely to die of something else, even if they do have prostate cancer.  A small amount of Gleason 6 cancer is common in men your age and it rarely possess a threat in the mans lifetime.

Your psa rise from 2 to 11.5 over 15 years is about a 7 years psa doubling time.  This also with your free psa is indicative of no cancer or a very small low grade tumor that is not a threat to your life.

If you are concerned about this situation you could keep getting psa tests and monitor it for the time being.  If the doubling time gets shorter (like 1-2 years), then you could consider action at that time.

A psa of 11.5 by itself is not concerning.  It partially depends on the size of your prostate since normal prostate tissue is putting out psa and a larger normal prostate will produce more psa.  That is why the doubling time is monitored instead.

There are other genetic tests and scans you could do, if your situation was very concerning to you.  There is no clear cut answer here, but I would bet that you can watch the psa for now, calcuate the doubling time, and monitor the situation without doing anything else.

Best,

Gene

RE: Should I have a biopsy?

by genemyers - June 13 at 2:46 AM

Did the nurse do the DRE? Just curious.

“DRE was enlarged and firm”. “Enlarged” is ok, as it could be anything but “firm” is ambiguous. If it came back saying they felt a “nodule” that would definitely be biopsy time (multiparametric).

Your psa’s of 4.4, 3.7 and 4.7: I consider those the same stable results. So far your psa is not increasing. The difference between 4.4 and 4.7 is within the normal variability of the test on the same man from the same lab from day to day.

You should have been getting free psa’s all along. You might call your doctor and have him send you the lab reports to see if free psa was done. That would give you another data point on what is going on, if anything.

If you do not have a free psa, I would go ahead and get another psa at this time. 

This is a hard call on getting a biopsy now. Maybe 50/50. Because your psa is low and not rising over time, my conservative inclination would be to listen to your doctor, finish the full course of the Flomax and the Bactrin, however long that is, and then get your psa and free psa again. You just might have prostatitis.

If you opt for a biopsy at some time I would not get a “blind” biopsy and instead get a multiparametric MRI with or without image guided biopsy. You might have to search for a center to do this but it will give you a better indication of what is going on in the prostate, and they will often only take 3-4 core samples in suspected areas, not the standard 12 core.

Your risk calculator sounds about right, including a risk of infection of 2-4%.

Thomas:

Are you looking for diet and lifestyle guidance and/or conventional medicine information? I know almost nothing about Apricot, Bicarb soda, Trypsin Enzymes, Paw Paw, Black Salve cream, or Bloodroot

The supplements I take to help suppress my cancer are curcumin, pomogranite, vitamin D, and resveratrol. Outside of these I am not very knowledgeable in this area. I do not believe that supplements, Diet, or lifestyle can stop a Gleason 8 cancer, although I think they may be helpful so why not do all your can do.

You say you do not want hormonal treatment, but you want to get aggressive now on treating your cancer. Please clarify and expand on this statement as to what your thinking is, or what you are looking for.

If you are looking on information on conventional medicine treatments please indicate this and indicate where you are located as this may affect your treatment options.

Gene

 

So sorry to hear about your husband, and the sudden shock of the whole thing, but there is hope. 

The change from 1000 to 181 is good news. Assuming it has only been 3 weeks that is good. Hopefully it will continue to go down. How far and how fast it goes down will give your doctor an indication of how well he is going to respond to treatment.

Well it is never better to have more mets than fewer mets, but the psa response in future tests will give you an indication of survival time; BUT everybody is different and there is really no way to predict long term outcome. Some men respond many many years to treatment and their disease becomes stable and get on with their life. 

Your husband is lucky to have you to help with his care.

 

 Gene

 

 

There is a benefit to doing chemo after Firmagon has failed, and until a couple of months ago this is what everybody did. 

But according to a trial that was just announced at the 2015 ASCO meeting it was shown that a 22 month average overall survival advantage was obtained for newly diagnosed metastatic patients given early Taxotere and Lupron/Firmagon vs. just Lupron/Firmagon alone. This is a huge development that is making medical oncologists change their treatment recommendations, and is likely why your doctor is recommending early chemo.

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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