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Old 11-23-2010, 08:23 PM   #1
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Prostate cancer management:

I have just gone through the worst three months of my life dealing with the after effects of my radiation therapy. And that was coming off a good high after my first annual follow-up after treatment and being declared cancer free. I thought the worst was behind me.

A good friend of mine is about to start radiation treatment. He case is very similar to what I had for symptoms. He is a Gleason 8. He is also 72 years old and not in the best of health. Is it ever suggested or recommended to just try to manage the cancer in these circumstances. I can't imagine him doing well with what I have been going through(not that he necessarily would), but just the treatment itself is no real picnic.

 
Old 11-24-2010, 03:18 AM   #2
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Re: Prostate cancer management:

Hi bwhitney,
Your experience with RT has been distressful, sorry to hear about that, but that was not the case with me. I think that many factors influence each case which is the reason why RT works well for some and it does not for others. Age is a big factor (I was 57 on my RT), and so it is the reason or purposes of submitting oneself to the treatment.

Usually RT is recommended for localized cancer which in the case of your friend should be a matter of investigation. If his case is not assured of being localized then RT would only relief the “wound” not cure it. Meaning that its application becomes controversial. Does the benefit outweigh the trauma?
Without cure as a target, Hormonal Therapy may be not as invasive and it would assure several years of quality of life. Surely your case and mine is different from that of your friend, so the final decision should be pondered carefully.

Wishing you a quick recovery, and the best to your friend.
Baptista

 
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Old 11-26-2010, 01:36 PM   #3
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Re: Prostate cancer management:

Hi B,

I'm responding to your initial post.


Quote:
Originally Posted by bwhitney View Post
I have just gone through the worst three months of my life dealing with the after effects of my radiation therapy. And that was coming off a good high after my first annual follow-up after treatment and being declared cancer free. I thought the worst was behind me.
Are you familiar with what Dr. Charles "Snuffy" Myers, MD, has had to say about coping with the side effects of radiation therapy? To me he is one of the best of the expert prostate cancer doctors communicating with patients, and he had a deliberately aggressive course of radiation himself as part of his treatmetn for his own challenging case, diagnosed in February 1999. He has written about it (and lectured about it) a number of times in his Prostate Forum newsletter, most recently in Volume 12, Number 6, published in October. That issue specifically gives his recommendations for rectal bleeding, which he faced himself. His recommendations differ depending on the severity of the bleeding, ending with his comment that the drug Leukine is the most effective treatment in his clinic for bleeding and is what solved his own problems. If you look at a list of back issues of the newsletter, you will find other issues that are focused entirely on radiation therapy.

Quote:
A good friend of mine is about to start radiation treatment. He case is very similar to what I had for symptoms. He is a Gleason 8. He is also 72 years old and not in the best of health. Is it ever suggested or recommended to just try to manage the cancer in these circumstances. I can't imagine him doing well with what I have been going through(not that he necessarily would), but just the treatment itself is no real picnic.
Yes, just coping with the disease without major treatment is sometimes recommended, especially for those in ill health, but it all depends on the case. It's also possible to start with mild hormonal therapy, stepping up to heavier duty therapy if the results are not satisfactory.

Baptista gave some good comments. I would like to add the following to one of his remarks:


Baptista wrote:

Quote:
Without cure as a target, Hormonal Therapy may be not as invasive and it would assure several years of quality of life.
Actually, unless the disease is far advanced, hormonal therapy is likely to add many years of life, as far as prostate cancer is concerned. That's based on solid data. Predictions of short survival are often a sign that the doctor giving the prediction is not expert in hormonal therapy, and, unfortunately, there are many such doctors.

Take care, and I hope this helps,

Jim

 
Old 11-26-2010, 09:17 PM   #4
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Re: Prostate cancer management:

I'm sorry bwhitney for jumping in on your radiation circumstance and I hope that you are able to overcome your awful side effects very soon. It's awful what you have to go through to try and get well and feel better.

Irv's pathology after surgery is 30% cure. His prostate was 80% cancerous and the cancer spread outside the prostate and went into the seminal vesicles. His Gleason score is 3+4. He's only 51 years old and is at stage T3b. We are told that if his PSA at the next check, 6 weeks from now, is above 0, he will require adjuvant radiation therapy right away, but if it's 0, we can decide to wait. I've read that waiting for the PSA to rise with his locally advanced cancer is actually not a good idea. It would be nice to think that we could do something else to preserve his sexual functions since we went out of our way to wait for a surgeon who could perform a nerve graft on one side and he also saved the nerve on the other. Radiation would kill those nerves.

The surgeon said he didn't recommend hormone therapy at this time. Right now, we are attempting to cure his cancer, even though it's a long shot.

Jim, from your experience, what is your input on this situation? I should mention that Irv has been in remission with his ulcerative collitis for several years now, but he's had flare-ups two or three times in his life and they were very bad. He's also had complications from kidney stones. I'm afraid of what radiation could do to him.

Ideally, I want Irv to live longer than the 15 years that the doctor is predicting and, it would be so nice if there was some hope of regaining his sexual functions.

I'll look forward to receiving any feedback on this. Maybe it will even throw some light on your case, bwhitney, if nothing more than just to serve as a comparison in light of the differences.

Rhonda

 
Old 11-27-2010, 10:03 AM   #5
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Re: Prostate cancer management:

Hi Rhonda (and B for borrowing your thread),

I'll put some thoughts in green.



Quote:
Originally Posted by srhonda61 View Post

Irv's pathology after surgery is 30% cure. His prostate was 80% cancerous and the cancer spread outside the prostate and went into the seminal vesicles. His Gleason score is 3+4. He's only 51 years old and is at stage T3b. We are told that if his PSA at the next check, 6 weeks from now, is above 0, he will require adjuvant radiation therapy right away, but if it's 0, we can decide to wait.
In theory doing a PSA at six weeks should be fine, but the books on PC recommend waiting longer. Perhaps others could comment on that. If it were me faced with that advice, I would check with authoritative sources to make sure that a PSA after six weeks would not possibly result in a PSA that had not yet fallen to its nadir (lowest point). Also, I'll bet that any PSA test at the 6 week point would be a conventional PSA test, sensitive to <0.1, and not an ultrasensitive test sensitive to <0.01. Maybe the six week test is okay, but, even if that test were negative with a PSA <.1, I would want that ultrasensitive test by the twelfth week or so.

Usually, as I understand it, if a patient is going to have follow-up radiation after an RP, they wait until the urinary and other systems recover. Maybe that's what is meant by "right away." Having radiation too early can compromise whatever capability (urinary, potency) that a patient still has. I can understand wanting to move quickly if there is a recurrence for a patient with some higher risk case characteristics, but I recall that you want to have such radiation before the PSA rises to 1.0, as it tends to be less effective after that point.



Quote:
I've read that waiting for the PSA to rise with his locally advanced cancer is actually not a good idea. It would be nice to think that we could do something else to preserve his sexual functions since we went out of our way to wait for a surgeon who could perform a nerve graft on one side and he also saved the nerve on the other. Radiation would kill those nerves.
If your husband had had perfect results from the RP, he could perhaps have risked some lattitude with lifestyle tactics, if he hadn't already adopted them. However, to me, now would be the time to go to a full-court press with the lifestyle tactics. For me, during this holiday Thanksgiving period in the states, lifestyle tactics mean looking wistfully at great dishes with cheese, at sausages, at ice cream, and many other foods I used to enjoy. However, I have come to enjoy my diet, especially the red wine at lunch and dinner along with a square of 70% cacoa dark chocolate. Is he taking a good Pomegranate supplement? There are four brands that are looking good, and the two I recall are POM Wonderful and Life Extension. Some brands have very little useful content, according to careful scientific tests. Is he taking a quality vitamin D3 supplement and having his 25-hydroxy vitamin D level tested? That's important. These are just a few of the tactics I think are important to give him better odds of avoiding a recurrence or keeping it on the mild side if it does happen.


[QUOTE]The surgeon said he didn't recommend hormone therapy at this time. Right now, we are attempting to cure his cancer, even though it's a long shot.[/QUOTE

That makes sense to me. The one element of hormonal therapy that might be tried now is the mildest element - a 5-alpha reductase inhibitor drug, either generic finasteride or Avodart. Both have some mild activity against prostate cancer, and for a strong majority of us, the side effects are no problem or even beneficial (more hair for some, including me, in the male pattern baldness areas, and often a somewhat higher level of testosterone, coupled with a far lower level of the much more dangerous DHT).


Quote:
]Jim, from your experience, what is your input on this situation? I should mention that Irv has been in remission with his ulcerative collitis for several years now, but he's had flare-ups two or three times in his life and they were very bad. He's also had complications from kidney stones. I'm afraid of what radiation could do to him.
I'm not as savvy about radiation as I would like to be, but I believe the ulcerative colitis could be aggravated by radiation. That would be something to check out from several angles. Hopefully others on this board will comment. Due to that, it could make sense to go straight to hormonal blockade for a recurrence, or possibly cryotherapy or HIFU would make sense.

Quote:
Ideally, I want Irv to live longer than the 15 years that the doctor is predicting and, it would be so nice if there was some hope of regaining his sexual functions.
I'm thinking that 15 years is quite on the short side, even with today's technology, which is not as good as what we will have as more months and years pass. For instance, most men on first line intermittent triple hormonal therapy respond for either about ten years or indefinitely, and after that fails, second and third line approaches typically are going to give us additional years before they fail. After that, even today, Leukine and some other drugs are available before chemotherapy. The new drug Provenge is very promising as an alternative to chemo or for use in combinations. I'm still optimistic that a cure for recurring prostate cancer will be found in the next half dozen years.

As a now savvy survivor at the eleven year point, I believe that most urologists just do not understand either radiation, hormonal therapy, or other drug therapies, nor do they understand the potential of supportive lifestyle therapies and countermeasures for side effects. Along with that, I believe that they often grossly underestimate our survival potential and scare the hell out of a lot of patients. All that said, they are the guys you want for surgery; that's what they are very good at!


Quote:
I'll look forward to receiving any feedback on this. Maybe it will even throw some light on your case, bwhitney, if nothing more than just to serve as a comparison in light of the differences.

Rhonda
Take care,

Jim

 
Old 11-27-2010, 10:16 PM   #6
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Re: Prostate cancer management:

Jim, thank you for your well thought out answer. I've printed out your message and shared it with Irv. Irv hasn't adopted much of a diet change except for very limited red meat and I'm trying to keep him off lots of dairy fat, but he doesn't say no to things like he should.

I've been looking at Invasion of the Prostate Snatchers and some of the things at the back of the book seem extreme and I don't think Irv would keep that up. Please let me know a little bit more of what you recommend as a start in changing his diet and what things he should have. Also, can he start taking supplements like Vitamin D before his radiation? The doctor said that taking supplements could effect his radiation and I'm not sure how.

My biggest concern right now are the articles I've seen...even recent ones, which claim that seminal vesicle invasion is a big indicator of poor prognosis. I'm hoping you have some wise words which would make sense against that. I've been feeling helpless and hopeless and depressed at times because I'm so afraid of what the future holds. I'm sorry, I'm just having a difficult time with this right now, but I'm sure that, with time, I'll adjust to this new reality.

Thanks.
Rhonda

 
Old 11-28-2010, 12:59 PM   #7
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Re: Prostate cancer management:

Hi Rhonda,

I'll put some thoughts in green, but I'll also respond to your other thread to which Tall Allen has already responded. (Actually I just did that, but a wrong click on the mouse wiped it out, so I'll have to try again. )

Quote:
Jim, thank you for your well thought out answer. I've printed out your message and shared it with Irv. Irv hasn't adopted much of a diet change except for very limited red meat and I'm trying to keep him off lots of dairy fat, but he doesn't say no to things like he should.
I've been at this for eleven years now, and my recollection of the early months is fading. I do have a strong memory of my wife insisting that I down a large can of cooked tomatoes at every dinner (to get the lycopene). Believe me, that gets old fast! I'm sure it takes a period of adjustment, and the adjustment is not complete for me yet. I don't miss red meat or pork much, but I really miss cheese!

Quote:
I've been looking at Invasion of the Prostate Snatchers and some of the things at the back of the book seem extreme and I don't think Irv would keep that up.
I don't have my copy with me, but you may be referring to an all vegetarian or macro biotic diet. I'm convinced that a Mediterrannean diet is both very healthy for us and very appealing to most of us. I've been on it for eleven years now, and I enjoy it.

Quote:
Please let me know a little bit more of what you recommend as a start in changing his diet and what things he should have.
Does he like fish and other seafood? That would be a great choice. I'm a particular fan of wild salmon. How about tofu? There are a number of soy substitutes for things like burgers, bacon and sausage. They aren't as good, but they're not that bad either. There are several cookbooks available with dishes designed for prostate cancer patients. Don't forget the red wine and dark chocolate with a high cocoa content.

Quote:
Also, can he start taking supplements like Vitamin D before his radiation? The doctor said that taking supplements could effect his radiation and I'm not sure how.
The doctor probably was meant to indicate care regarding supplements during radiation, or its aftermath if seeds are used, but not before or after radiation. There's a lot of evidence that the right supplements and nutritional choices help when taken before and after radiation. I believe that vitamin D is no problem.


Quote:
My biggest concern right now are the articles I've seen...even recent ones, which claim that seminal vesicle invasion is a big indicator of poor prognosis. I'm hoping you have some wise words which would make sense against that. I've been feeling helpless and hopeless and depressed at times because I'm so afraid of what the future holds. I'm sorry, I'm just having a difficult time with this right now, but I'm sure that, with time, I'll adjust to this new reality.

Thanks.
Rhonda
You guys took your best shot at a cure, and you still may have achieved it. Don't sell that short! But even if you have not achieved a cure, prostate cancer is not a death and severe disability sentence for most of us. Many recurrences are quite survivable, including a large number of men who survive without the need for additional major treatment. Almost every month that goes by brings at least some advance in the field of managing prostate cancer. That's going to continue. I'm hopeful that some year soon we will look back at prostate cancer the way we now look at cervical cancer, testicular cancer, childhood leukemia, pneumonia, or tuberculosis - all highly curable, preventable, or survivable.

Take care,

Jim

 
Old 11-29-2010, 12:03 AM   #8
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Re: Prostate cancer management:

Thanks, Jim. Another great email which I printed and gave to Irv. Now, can you please tell me about the Mediterranean diet? I would really like to get Irv onto something he can tolerate and even enjoy. I was even thinking that an evening ritual of sitting together and sharing red wine and dark chocolate would be very nice. Maybe we can make a toast to long life each time too.

 
Old 11-30-2010, 03:30 PM   #9
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Re: Prostate cancer management:

Hi - I am a new member and have been reading through this thread with interest. I am 60 and been diagnosed with Prostate Cancer Geason 8.5.

My initial PSA reading August 2009 was 9.5 where it held until July this year when it went to 23 which is when I had a biospsy and all the various scans which ended up showing a small spinal metastes (?). My urolgist pointed out that due to the high gleason score, high psa and the metases ratiation therapy was not an option.

At that time I went on a 4 week course of Bicalutamide which brought my psa down to 11. I thought that was very good considering the uroligist thought that we couldnt expect much in 4 weeks but it seems not enough. He then put me on 4 week course of Flutamide which has now reduced the psa to 6.1.
I had no side effects at all from the Bicalutimide and had minor side effects from the Flutamide - mainly tiredness and tender nipples.

The question is where to next as my psa is still too high. I would like to continue with Flutamide or Bicalutamide (preferably the latter - one pill a day and no side effects) but my uroligist wants me to have a Lucron injection.
From what I have read the side effects will be far greater and I am worried on the effect that increased tiredness will have on my ability to continue to work effectively as a self employed designer.

THe more a read about this the more I realise that there is no "right" answer. Everybody reacts differently and urologists give advice based on their own range of experiences. I am going out to get the book "3rd opinion on prostate cancer" to see if it has anything to offer.

 
Old 12-01-2010, 01:13 PM   #10
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Re: Prostate cancer management:

Hi Marty1

As your doctor advised you, your advanced status may be best treated with hormonal therapy. Both anti-androgens you have been taking (Bicalutamide and Flutamide) worked well in lowering the PSA. However, they seem to be not enough in bringing down the PSA to “remission” levels (0.05 or lower). The principle is that cancer cells feed on testosterone, so the hormonal treatment is done to stop the “production” of testosterone and/or stop the feeding of cells.

Lupron is a LHRH agonist used to stop the “production” of T at the testes. The anti-androgens will act at the cancer cells to block the feeding. These drugs can be taken separately or together to give a more powerful “blow” to the cancer. A typical protocol is to use a triple blockade with three drugs taken at the same time; LHRH agonist + anti-agonist + 5α reductase inhibitor (ADT3).
All of them have side effects, and the lower level of testosterone in the body will add some more. But the side effects symptoms can be handle with separate medicines or even by a regime of nutrition, physical exercises and changes in the way we do things. You may need to get used to them or change to behaviour, like sleeping longer hours or getting supplements.

You can find loads of information in the net and books about hormonal therapy and its drugs and side effects. There are also books on nutrition, exercising and supplements, recommended for prostate cancer patients.

Surely you need to balance your professional life but you have to try to stop the cancer from growing and from metastasizing. Just get it down to remission.

Wishing you the best.
Baptista

 
Old 12-01-2010, 06:00 PM   #11
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Re: Prostate cancer management:

Hi Rhonda,

I'm responding to your post #11 on this thread:


Quote:
Originally Posted by srhonda61 View Post
Thanks, Jim. Another great email which I printed and gave to Irv. Now, can you please tell me about the Mediterranean diet? I would really like to get Irv onto something he can tolerate and even enjoy. I was even thinking that an evening ritual of sitting together and sharing red wine and dark chocolate would be very nice. Maybe we can make a toast to long life each time too.
Dr. Charles Myers has authored or coauthored two books for laymen on prostate cancer that contain an abundance of nutritional advice, including advice and recipes for the Mediterranean diet. The latest is "Beating Prostate Cancer: Hormonal Therapy & Diet," and the first was titled something like "Eating Your Way to Better health" [for prostate cancer]. Several other authors have also provided good books on diet, but I'm not as familiar with those. You can also search for it on www.pubmed.gov to see research about this prostate healthy, heart healthy diet.

Jim

 
Old 12-01-2010, 06:12 PM   #12
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Re: Prostate cancer management:

Hi Marty,

Welcome to the board!

I'm responding to your post of 11/30 6:30 PM, to which Baptista already has provided some excellent thoughts and information.

Quote:
Originally Posted by Marty1 View Post
...
At that time I went on a 4 week course of Bicalutamide which brought my psa down to 11. I thought that was very good considering the uroligist thought that we couldnt expect much in 4 weeks but it seems not enough. He then put me on 4 week course of Flutamide which has now reduced the psa to 6.1.
I had no side effects at all from the Bicalutimide and had minor side effects from the Flutamide - mainly tiredness and tender nipples.

The question is where to next as my psa is still too high. I would like to continue with Flutamide or Bicalutamide (preferably the latter - one pill a day and no side effects) but my uroligist wants me to have a Lucron injection.
I'm a little puzzled why he switched from bicalutamide to flutamide, and I'm also puzzled why he did not start the Lupron sooner. For a case like yours, it would be extraordinary if just bicalutamide or flutamide were enough to bring the cancer under control. However, it's not that late to start the Lupron.


Quote:
From what I have read the side effects will be far greater and I am worried on the effect that increased tiredness will have on my ability to continue to work effectively as a self employed designer.
Actually, it's a mix, and the countermeasures Baptista mentioned are really important, especially the exercise (aerobic and strength). The Lupron is likely to add some side effects, all of which can be at least partly countered, but it should also diminish or eliminate (for most of us) breast issues like tenderness, soreness, and enlargement that bicalutamide and flutamide promote.

Quote:
THe more a read about this the more I realise that there is no "right" answer. Everybody reacts differently and urologists give advice based on their own range of experiences. I am going out to get the book "3rd opinion on prostate cancer" to see if it has anything to offer.
There is a core of fairly typical responses, and then some variation. It's good to get those additional opinions.

Take care,

Jim

 
Old 12-06-2010, 12:43 PM   #13
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Re: Prostate cancer management:

Thank you Baptista and Jim. Its great to have such thoughtful input from the other side of the world.

I have decided to get a second opinion and have an apointment with an oncologist this afternoon. I have not got on well with my uroligist so far mainly because he does communicate very well at a personal level - it seems this quite common among specialists.

 
Old 12-07-2010, 01:08 PM   #14
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Re: Prostate cancer management:

Well I went to see a Radiation Oncologist yesterday and he confirmed my concerns about how my treatment was being managed. He pointed out that once surgery was ruled out an Oncologist was the one to deal with managment/treatment rather than a Uroligist.

The first thing he asked was why I was switched from Bicalutamide to Flutamide after getting good results in Psa reduction. I had no answer but he thought it was probably a funding issue. He said that Bicalutamide was a much superior hormone treatment to Flutamide with better results and much lower side effects but it seems that it still does not have FDA approval.

His reccomendation was that I have the 3 month Lucrin (Lupron) injection to get the Psa below 1 then use Bicalutamide to maintain that for a further 9 months monitored with 3 monthly Psa tests. At that point I would have new scans and then make a decision wether to maintain hormone treatment or have some form of targeted radiation therapy.

So its injection for me tomorrow.

 
Old 12-07-2010, 10:02 PM   #15
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Re: Prostate cancer management:

Hi Marty,

You are on a better path now. I'll insert some comments in green.


Quote:
Originally Posted by Marty1 View Post
Well I went to see a Radiation Oncologist yesterday and he confirmed my concerns about how my treatment was being managed. He pointed out that once surgery was ruled out an Oncologist was the one to deal with managment/treatment rather than a Uroligist.]/QUOTE]

That makes a lot of sense.

Quote:
The first thing he asked was why I was switched from Bicalutamide to Flutamide after getting good results in Psa reduction. I had no answer but he thought it was probably a funding issue. He said that Bicalutamide was a much superior hormone treatment to Flutamide with better results and much lower side effects but it seems that it still does not have FDA approval.
It helps to understand the ins and outs of FDA approval. Casodex is FDA approved for use with an LHRH-agonist drug (like Lurpon) for the treatment of metastatic prostate cancer. The drug developer proved its effectiveness and safety using a clinical trial(s), and that costs a lot of money - many millions of dollars. Once approved, such drugs can be used "off-label" - meaning for a use not specifically covered by the approval - provided the benefits and risks are explained to the patient and the patient agrees. Well, "off-label" use is a whole lot less expensive than running a fresh clinical trial costing many millions more dollars to cover one kind of use not covered in the original approval trial. What that means is that many drugs are prescribed "off-label" for uses that are almost certainly perfectly reasonable (but without a clinical trial to prove it) and probably never will be covered by an approval trial.

Quote:
His reccomendation was that I have the 3 month Lucrin (Lupron) injection to get the Psa below 1 then use Bicalutamide to maintain that for a further 9 months monitored with 3 monthly Psa tests. At that point I would have new scans and then make a decision wether to maintain hormone treatment or have some form of targeted radiation therapy.
That strikes me as a fairly good approach, but the docs I follow would like to see a triple combination until your PSA got to at least <0.05, with <0.01 prefered.

So its injection for me tomorrow.
Good luck with your hormonal therapy. Be sure to look into the countermeasures that help minimize or prevent side effects. They can make a huge difference in the way you experience hormonal blockade.

Take care,

Jim

 
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