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Old 02-01-2012, 12:36 PM   #1
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PSA decrease from 200 to 0.63 in 4 months after HT.

Hello,
I´m new here although I have been following your messages for a while. Mi concern right now is that my father (71 y.o. at dx) was dxed with advanced PCa in august 2011, PSA at dx 205, gleason 4+3, bone scan positive, he started therapy with bicalutamide in august 2011, and his first decapeptyl semestral injection was sep 8th 2011, from this day he also has a Zometa injection monthly. He is a farmer in good shape although with treatment he gained weight and lost strenght, otherwise he has no symptoms. He lives in a place where there is no internet acces. Afyer treatment his PSA was 5.6 in october 21th 2011 and 0.63 in january 17th 2012, the doctors are happy with the PSA dropp but cautios because the PSA previous to diagnose rose from 2.6 in july 2007 to 205 in july 2011. His next visit to the urologist is in august and I´m affraid about this waitting period.
I read of many of you with encouraging news and I will appreciate if you have any recomendations/impressions over my father´s case.
Good bless you all.

 
Old 02-02-2012, 03:16 AM   #2
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

CVG

Welcome to the board. You may be worry but your father’s treatment is in line with traditional ways and the drop in PSA shows that the treatment (ADT) is efficient and that your father’s cancer responds well to hormonal manipulations.
The question is if he is taking the Bicalutamide continuously, since august 2011.

I say that because of his advanced status in which cases the hormonal treatment seems to work better with double (ADT2) or triple (ADT3) blockade protocols. The logic is that the treatment tries to “kill” the cancer by blocking the production of testosterone and preventing it from being absorbed by cancerous cells. The drop in PSA is indicative that there is less cancer or it has become “dormant”.

In your father’s case, the 6-month shot Decapeptyl (LHRH agonist) is blocking the production of testosterone at the testis inducing chemical castration (mono blockade, ADT1), and if the Bicalutamide (antiandrogen) is added (double blockade ADT2), it would be blocking the receptors at the cancer cells avoiding the “feeding” of testosterone.
In a triple blockade (ADT3) another drug (5-ARI) would be added to block a more powerful type of testosterone named Dihydrotestosterone (DHT). You can research the net for details.

Zometa is a bisphosphonate taken to “repair” the loss in bone caused by the metastatic cancer. Recently a newer drug named Xgeva is administered in patients with metastatic bone cancer, replacing the bisphosphonates. Anecdotally, this drug aims at the cancer directly killing it and “repairs” bone too. He can inquire about this drug in his next visit to the doctor.

Hormonal treatment causes side effects. The most reported is fatigue and hot flashes, but it may come the time when he experiences other effects. In my experience I had numerous effects but mild, some may exist but are unnoticed. The important is to be cautious and get tested constantly.
Amenia seems to be common in patients taking bisphosphonates while on ADT. The treatment will also drive the testosterone down which may cause symptoms and risks related to hypogonadism in regards to heart health and diabetes.

I would recommend your father to get his lipids checked together with other proper tests such as; testosterone, DHT, ECG, Dexa, etc., which are not usually requested by urologists.

Waiting until August may be ok, but make it sure that your father is on a proper protocol already. His PSA is low but it should get to remission levels of less than 0.05. The testosterone and DHT tests will check for the efficiency of the drugs.
You could advice him of getting tested now while waiting for the consultation

Hope for the best.

Baptista

 
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Old 02-02-2012, 05:40 AM   #3
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

Dear Baptista,
Thank you very much for your answer. Mi father is taking 50 mg bicalutamide every day since august. He has a litthe anemia and his calcium levels are increassing now in 9.3, and also he has increased GPT levels. Do you know the active principle of Xgeva, we live in Spain so I don´t know if it is available here. Otherwise his lipids are fine, he only has a very small amount of cholesterol, now in 246 (240 is the upper limit according to the lab).
The testosterone and DHT levels were not ordered by the urologist, i´ll ask his GP doctor to include them.
I deeply appreciate your response. Thank you very much again.
Best regards,
Carmen

 
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Old 02-02-2012, 02:44 PM   #4
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

Carmen,

I am glad to know that the protocol is ADT2. Some doctors would recommend ADT3 but if the treatment shows to be successful, he can wait until the next meeting in August as scheduled. He can then discuss about the possibility of changing protocols if he wants.

Meanwhile, I would recommend you to request his GP of getting the PSA and Testosterone tested every two to three months to check the progress of treatment. DHT test would serve as reference to his diagnosis.
The PSA will still decline to remission levels (<0.05) and the testosterone T should be at castrate levels (<0.25).
In the presence of a high PSA with a low T it would mean failure of the treatment. In the presence of a low PSA with a High T it would mean that the drugs are not effective and should be changed or added.

Xgeva is sold in Spain under the name of Prolio. This is the antibody drug with the generic name of Denosumab.



<deleted>



More details on the drug: http://www.cancer.gov/cancertopics/druginfo/fda-denosumab

You may discuss with your fathers’ doctor about the benefits (if any) switching Xgeva with Zometa.

Your father should be aware of the side effects. Changing diets and physical fitness have helped me to counter the effects from the treatment. Supplements may also help to balance what is or will be missing.

I would recommend you to read this book that describes well about the treatment and diagnosis of your father;
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

Your father and I will do well and beat the bandit.




<removed>





Baptista

Last edited by Administrator; 02-04-2012 at 07:05 AM.

 
Old 02-06-2012, 03:03 AM   #5
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

Carmen,

Following my above post, I would like to add a note of caution regarding both drugs; Xgeva or Zometa.
These drugs are associated with the disease “Osteonecrosis of the Jaw” (ONJ). Some patients taking these drugs never experience the problem but some report symptoms in just 18 months since start taking the drugs.
It is recommendable to get your father to a dentist for a mouth checkup or any dental repair at earlier stages.
You can find details on the disease in the net.

I am very glad to know that you will have your father tested for the testosterone and bone densitometry (DEXA) in April.

Regards (salud)

 
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Old 05-13-2012, 01:52 PM   #6
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Re: PSA decrease from 200 to 0.63 in 4 months after HTgoing the wrong way.help!!!

Dear Baptista,
after my last message my father´s PSA results did not went the right way. Hi started at 205 on august 2011, drown to 5.6 in october and to 0.6 in january. His last test was 0.81 in april. He is taking bicalutamide 50 mg daily, decapeptyl (tryptorelin) each 6 months and zolendronic acid monthly. Here the urologists do not want the patient to be treated by oncologists, I am not sure what to do. My father did not realize about this increase, yet. His next appointment with the urologist is in august.
Thankl you in advance to all of you I gain strenght following your progress.
Best,
carmen

 
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Old 05-13-2012, 04:07 PM   #7
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Re: PSA decrease from 200 to 0.63 in 4 months after HTgoing the wrong way.help!!!

Hi Carmen,

I'm joining the thread you started and have read your exchanges with Baptista through your post #6 of today, May 13. I have posted a couple of recent threads about my own success in coping with a challenging case, now at the 12 1/2 year point, using intermittent ADT3 as my sole therapy (with supporting drugs and important lifestyle program).

First, congratulations to your father on his great success in getting his PSA to fall below 1 in just several months! That's a wonderful response!

The trick is to keep up that success and extend it. I see you father's situation very much the same way as Baptista. I'll add a few comments.

Is it possible you could get a second opinion in Spain with an oncologist who treats prostate cancer? I believe your father's urologist is doing a very good job, but, like Baptista, I see some room for additional important steps, such as testing testosterone and DHT. In the US, oncologists are usually more familiar with hormonal therapy (ADT - androgen deprivation therapy) than urologists. However, a good urologist who is fairly savvy with ADT would likely be a better choice than an oncologist who was not very interested in prostate cancer patients.

Regarding the dose of bicalutamide: I have always been on a dose of 50 mg, like your father, during the periods when I am on the heavier duty drugs (Lupron for me, the LHRH-agonist, and bicalutamide). That dose has worked perfectly well for me. However, the medical oncologists whom I consider leading experts prefer a higher dose for men with proven metastases. Usually they seem to go with a dose of 150 mg daily for such men, according to their statements, though the dose can be 100 mg or even higher than 150 mg, though my impress is that doses above 150 mg are uncommonly used. I believe these doctors would want your father on a dose of 150 mg daily, especially with that slight rise in PSA.

Regarding Zometa: I'm glad to read that your father is on this very powerful drug. As you may know, it is excellent for preserving bone mineral density, which is otherwise at substantial risk for patients on ADT, and it is also often effective in slowing the increase in bone metastasis, or of stabilizing existing mets and preventing increases, or even of reversing and eliminating bone mets! That's awesome, when you think about what's happening. However, as Baptista noted, the risk of ONJ is significant for those on frequent dosing, like your dad, that goes on for many months.

There have been previous threads on ONJ on this board, should you care to search the archive. In brief, since your father has been on Zometa for some months now, he should not have any invasive dental work, as I understand it as a layman. Routine cleaning is ok. Perhaps fillings would be okay too - not sure about that, but work that affects the gums would be risky.

Dinner is ready for me now, but I hope to continue with a few more thoughts.

Take care,

Jim

 
Old 05-14-2012, 03:51 AM   #8
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

Hi Carmen,

Thanks for the update. I am sorry for the results this time that were on the opposite direction (up) since starting ADT. However, the increase is relatively small to draw any conclusion yet, and many reasons other than cancer could be the cause.
Your father still has the prostate gland in place and any physical manipulation of the gland on the day before doing the test could cause a rise of the PSA. Your father is a farmer and any farming activity such as riding a bike for long periods or sitting on a hard seat of a tractor when plowing the soil, could cause an increase. Sex the night before, etc.

I believe that your initial comment of “advanced PCa” come from positive image studies for metastatic cancer. This relates your father to high risk for spread to other organs which requires additional tests and vigilance by proper oncologists.

I think that the Spanish Social Health system works similarly to the Portuguese where the care of prostate cancer patients is done initially by urologists with added speciality in oncology. Nevertheless, specialized oncologist from the Institute of Oncology also cares for this type of cancer and they are covered by our national health plan (free of charges) and they are better for advanced cases, in my view.
In Spain you have the oldest Oncology Association of Europe (SEOM – Sociedad Espanola de Oncologia Medica) which is highly regarded by other European medical associations. Their treatment standards are similar to the American ASCO. You can find them on the net and can investigate their role in the national health system through your father’s GP. Give them a call.

Two other less probable causes for the slight increase of PSA but that can be considered, are related to the LHRH agonist injection (Decapeptyl). The drug would be losing its effectiveness in April (last shot was in September 8, 2011) causing higher levels of testosterone than those circulating in the January tests; OR it could be a cause of momentarily flare due to the newer injection administered in April, if the shot was done before drawing blood for the PSA test.
These are only theories but are probable causes too and you would need to investigate about the time of the shot and PSA test.

As Jim comments in his above post, your father could try and increase the dose of Bicalutamide to 2 x 50 mg (one pill at morning and one at night) daily, starting now even without the previous consent of his urologist. This is a typical practice of oncologists and it is proven to work. In any case, a testosterone test is highly recommended to verify for the effectiveness of the drugs. The PSA test is not enough.
I am sorry to be so pertinent, but I would tell your father to get a testosterone test done at his own expenses if the GP doesn’t pass him the referral (it costs 30 euros in Portugal).

Having prostate cancer becomes a long “marriage” affair with the bandit. Treatments are also for years so that one should plan their live style accordingly. ADT can be followed by an expert at distance. You father could get consults from an expert in a big hospital/clinic in a city and have his GP to care for his case locally. The GP must be as friendly as possible.

I hope the PSA gets back to the downward trend.
Wishing you peace of mind.

Baptista

 
Old 05-14-2012, 10:16 AM   #9
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Re: PSA decrease from 200 to 0.63 in 4 months after HTgoing the wrong way.help!!!

Hi again Carmen,

I'm continuing my response of yesterday, after reading Baptista's latest post that I hope you found helpful.

Back to Zometa: It wasn't long ago that we were not even aware of the risk of ONJ from Zometa. I believe it is still considered infrequent, if not rare, but I am not so sure of that. A woman two houses away from us was on Zometa for breast cancer and developed ONJ. Another woman in our neighborhood was also taking Zometa and developed ONJ. It's becoming hard for me to see ONJ as a rare event, though perhaps the occurences in our neighborhood are just coincidences that do not represent the norm.

As I think I recall Baptista noting, the new drug denosumab (trade name Xgeva in the US, Prolia in Spain) appears to also pose a risk of ONJ that may be about the same as the risk with Zometa. On the other hand, expert doctors are impressed with the effectiveness of denosumab, based on the evidence from clinical trials. As you may know, denosuMAB is from a Monoclonal AntiBody and is not a bisphosphonate drug, and it is a very encouraging development that we now have quite different classes of powerful drugs to preserve bone density.

Actually, we have three different classes of powerful drugs for this role. The third is estrogen, delivered with impressive safety via transdermal skin patches. One expert in treating advanced prostate cancer is using transdermal estrogen virtually exclusively in his practice to preserve bone density in men on ADT. It also has other important benefits for prostate cancer patients. Of course, it has its own set of side effects, but these look pretty tolerable to me.

Statin drug? Is your father on a statin drug? Most of us think of these drugs for controlling cholesterol in order to promote cardiovascular health, but excess cholesterol appears to be an important risk factor for prostate cancer as well. Also, men on ADT have extra cardiovascular risk, unless that risk is countered. Studies indicate that death from prostate cancer occurs at a much lower rate for men who have been on statin drugs for several years, and it looks to me like the longer, the better, judging from study results.

Diet: I'm wondering about your father's diet, as he is a farmer. In the US, farmers are well known for eating hearty diets that often include a number of foods that appear to increase risk for prostate cancer. Bacon would be at the top of the list, with pork and other red meat close behind, including lamb. If he grows flax or rapeseed plants, he may be consuming flaxseed oil or canola oil that appear to fuel prostate cancer (though probably fine for women). Dairy products also appear to pose some risk. (I have substituted soy for dairy products for more than a decade now.) On the other hand, your father may be consuming a lot of fruits and vegetables, for which Spain is internationally famous of course, and a Mediterranean diet, which has outstanding credentials not only for prostate but also heart health. This is just a brief mention of the important area of nutrition tactics to aid our battle against prostate cancer.

I hope this helps.

Take care,

JIm

 
Old 05-14-2012, 01:09 PM   #10
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

Dear Jim and Baptista,
I have followed your post for a while and I sincerely apreciate your income. My father´s bone metastasis to bone where diagnosed by bone scan in the 4th to 7th ribs in both sides, MRI did not sahown any pelvic nodes but the pelvic bones and the left femur showed metastasic disease. Right now he has an intermitent caught but he is doing well. He is taking statins (in alternative days) and his cholesterol is in the upper limit but OK, he also eats 5-6 pieces of frutit every day plus freshly made pomegranate juice (one piece per day) and guanabana juice every day. They normally eat meat for lunch (pork or cown with potatos and vegetables) and fish with vegetables for dinner. The only oil they eat is olive oil.
Our urologist (paid) told me that he could eat everything he wanted because he had not hope and that if the hormonal therapy fails (he, the urologist will not put him in any chemotherapy drug because this will only gain 3-5 months and will cause adverse effects to the patient), so, briefly he said there is nothing to do just relax for him and support, you can´t do anything else for your father. The urologist at the social health system at least told us that there were some alternatives.
After following your cases since last summer I feel that these doctors are not doing all they can for my father. I am affraid for having him taking more blood samples because he doesn´t like it and he gets stressed (sickness with drown in blood pressure) even the day before extraction, but for sure I will get him to do the testorene an DHT levels levels. He has got his last shot of Decapeptyl on March 8th (the first on september 8th 2011) and he is not doing any heavy work at the farm so I am concerned about the PSA rising.
Following your suggestions I will contact an oncologist for support, but the problem is that my father will worry about that because he is feeling well right now and I am not able to worry him.
Baptista, do you know any physician that could follow my father´s case at distance (my father does not like been away from my mother), if so I will appreciate very much your suggestion.
Jim and Baptista congratulations in your fight and thank you very much for your support and advice. God bless you!!!

 
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Old 05-14-2012, 02:25 PM   #11
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

Hi again Carmen,

No doubt the urologist believes everything he has said, but he just does not understand the effectiveness of well-done ADT and other drugs, as you already are aware.

His comment on chemo is also ignorant, though it stems from a grain of truth. When trials are done in the US, the companies behind the drugs being tested typically actually aim to demonstrate a benefit in survival of just a few months compared to the then current approach, as such an advantage is usually enough to support approval by the US Food and Drug Administration (FDA). Ideally they would plan the trial to get a complete picture of what the drug can do, but they do not do that because it would involve extending the planned length of the trial by many months or years, and that would add great expense to an already very expensive trial. (For example, the Dendreon company spent more than a billion dollars on research supporting its immune system prostate cancer drug Provenge before the drug was approved by the FDA. Dendreon followed surviving patients up to three years; a third of the patients who got Provenge in the trial - all with very advanced cases - were still alive at the three year point.) There are several important points to understand about these clinical trial success reports of brief benefits, but here are two key points.

First, the trial plan (protocol) will usually follow patients for only a few years. Those patients still alive at the end of that time, three years for example, will be credited in the statistics with three years of survival, but some live far beyond the end point. However, their extra time is not credited in "mean" (average) survival numbers. Usually the average is calculated as a "median," meaning half do better and half worse.

That gets to the second point. A good oncologist is going to know pretty soon, within one to three months I've heard, if a patient is responding to a drug. If he is not responding, then the patient should be moved to something else. Something similar is done in a well-run clinical trial, where the patient will often be switched to something else if the cancer shows signs of progressing. However, the result is that the success average for the drug in the trial is pulled downward by averaging in results for many patients who do not respond to the drug. Time gained for successful new drugs, for those patients who do respond, is often well beyond the three to five months success reported. I am still surprised that so many doctors and medical news reporters do not understand this.

You wrote:



Quote:
Originally Posted by cvg View Post
... He is taking statins (in alternative days) and his cholesterol is in the upper limit but OK,
Leading doctors have known for years that cholesterol had some influence that fostered prostate cancer, but key details have emerged only in the recent past. I am a layman and certainly no expert, but I believe expert doctors would want your father to get that cholesterol down, if possible.

Much of your father's diet looks great, such as the olive oil, fish, fruits and vegetables. The thought of farm fresh food makes me envious. However, the pork your father is eating for lunch is likely fueling the cancer! (I know pork can be a delicious and nourishing meal; I miss it myself.) A key problem with pork for prostate cancer patients is that pork is high in arachidonic acid, an acid which promotes prostate cancer in a number of ways. (Some books explain this well.) Pork is likely fine for the rest of the family - just not for him. If he is like me, changing eating habits can be tough. I was able to do it when I realized my life was at stake. You wrote:


Quote:
Our urologist (paid) told me that he could eat everything he wanted because he had not hope and that if the hormonal therapy fails (he, the urologist will not put him in any chemotherapy drug because this will only gain 3-5 months and will cause adverse effects to the patient), so, briefly he said there is nothing to do just relax for him and support, you can´t do anything else for your father.
It saddens me when I learn of doctors making such ignorant comments. (It happens a lot in the US too.) First, there is strong evidence that what we prostate cancer patients eat and the supplements we take do make a difference. Second, chemo is not just a single drug but a variety of approaches, with likelihood of substantial benefit for at least one. Third, even for standard chemo (taxotere plus prednisone), the first round for prostate cancer patients is typically well tolerated. Fourth, well-done ADT could put off the need for chemo for a long time. Finally, so much progress is being made that gaining a few years could make a huge difference for your father. He should have a lot of hope, not give it up!

Your father is fortunate for your help. Keep up your good work.

Take care,

Jim

 
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Old 05-15-2012, 11:55 AM   #12
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

Carmen

I am appalled by the negative comment of the doctor. Maybe his experience with ADT and Chemo treatment is scarce. I agree with Jim’s opinion with regards to what chemo can do and I think that you should try to find someone in which the whole family feel comfort.

Unfortunately I do not know any oncologist in Spain that I could recommend you, but you can contact SEOM and get a referral to an oncologist close to your father’s place. The Institut Catala d’Oncologia, Barcelona, Spain, is also a name that can be found in matters related to PCa.
In Europe a famous clinical oncologist who has been involved in researches for prostate cancer advanced cases is Dr Chris Parker of The Royal Marsden Cancer Centre, London, UK. He was involved in the phase 3 trial of Alpharadin, which has shown successful outcomes in the treatment of bone metastases.
You can read about him and the drug by typing the names in a net search engine.
In fact, this is a drug that I would recommend to your father’s condition and that is now offered in clinical trials that may be available in oncology centres in Europe. Try to investigate about this with SEOM.

The info you shared on the initial diagnosis with wide spread of bone metastases is in fact worrisome and probably the doctor’s negative answer had the meaning of being it difficult to get a cure. However, the cancer has responded well to hormonal ablation in a very short time driving the PSA down to levels that are considered “treatable” in Gleason score 7 cases, and that instigates to a possibility for a controllable case. I think that in your next meeting in August the doctor will “react” if the PSA continues climbing. (Probably increasing the drugs potency or choosing an alternative medicine. Ex: change Bicalutamide to Cyproterone)

One should also to consider the newer drugs in ADT that care for the intratumoral activity of cancer. MDV3100 is a better substitute for antiandrogens, and Abiraterone acetate (Zytiga) can replace ketoconazole which are drugs used in a second-line ADT before chemo.

My opinion in this respect is that the cancer of your father is not of the type that produces low levels of PSA (your father got numbers above 200), so that the decrease was significant and the drugs used by his doctor are very efficient. The initial big drop (200 to <1.0) was not just a “clean up”. Any increase therefore is also significant particularly in high risk cases. However, the small amount from 0.63 to 0.81 does not mean yet that the cancer is refractory. The next PSA test may provide some clues to what is happening.

You are very concerned, I do understand you, and your father is fortunate for having you so involved in his care. His resistance in having blood tests done several times also contradicts your efforts to lead him for something you believe to be better. He may also think that the present doctor is “enough” and may lay down any effort you may do to convince him in seeing a different doctor.
This may be frustrating. You could seek your mother for help in letting your father to accept things and in changing his habits and diet.
The testosterone test can be done together with the same sample of blood used for the PSA.
Can you inform me about the location of your father, which region or city?

I sincerely hope that things improve and that you relax.
God bless you too.
Baptista

 
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Old 05-15-2012, 02:11 PM   #13
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

Dear Jim and Baptista,
Thanks a lot again.
I was not really aware of the harm of pork to my father´s health, but I am sure he will adapt his diet. I was trying to buy and translate to him Dr´s Myers book recomended to me by Baptista but I failed the first time. I¨ll try to get the book again tomorrow and translate it to my father toghether with the diet suplements in one of your threats (he will love herring!!).
My father basicaly feels well, he wakes up at 7 (get out of bed once during the night and doesn´t experience pain or has noted blood in urine), sleeps all night and then walks for 1 hour (he is 1.80 meters tall and weights 98 KG now), after he milks the cows (1/2 h) and go back to walk/talk to people. He eats lunch and in the afternoon plays cards for about 2 h.
He basically gets depressed when thinking about his illness, if he is doing things he is fine, and doesn´t want to consult other doctors. They live in a small village in the northwest coast of Lugo called Viveiro (Spain), if you need any further information I will provide it. My father also had several accidents on his rips, first about 10 years ago he was caught by the tractor and broke several ribs and then he fell down to the ground early last year, so I don´t know whether the bone scan could difference the consequence of this lessions from the tumor itself.
Anyway, Thank you very much a lot, I am sure my father says thanks to you both again. MY preferent task for the next days is to translate your thinkings to my father. Your answers mean a lot to me and I really don´t know how to express my grattitude. Thank you and take care
Carmen

 
Old 05-15-2012, 07:34 PM   #14
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Re: PSA decrease from 200 to 0.63 in 4 months after HT.

You're most welcome. I'm glad to help. Please keep asking any questions that come to you.

Take care,

Jim

 
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