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tonybuxton
Posts: 86
Joined: May 2012

Previously I posted about casodex on this forum. After IMRT my PSA slowly started rising. I started taking Casodex 50 mg about two years after I finished my IMRT when my PSA  rose to 9.5. In a very short period it went down to 0 and I continued to take the medication for a total of three months. My PSA stayed very low for during this period. I stopped taking it Then started to rise slowly at first and then quite quickly up to 14 after one year of stopping the medicine. So I started taking it again and my PSA   went down to 0 over a period of six weeks. Then I stopped taking it
This last six weeks of taking the medicine has been worse than the first time I took it in terms of side effects. This is probably due to the fact that I am now 85 years old and have a number of recently acquired health problems. The side-effects were not that bad the only bad one  being persistent alternating diarrhoea and constipation which is now cleared up since stopping the medication. I did read somewhere on the Internet about intermittent Casodex of stopping the medication when the PSA goes down to 0 and starting again when it goes up to 10 then stopping the medication. I am thinking of doing this and I'm wondering if anyone on this forum has similar experience of Casodex and comment on my proposal. There's more than one reason I want to go on intermittent medication besides the side-effects. It is its cost. The hospital charges almost $10 a pill because there's no generic available in the country I live. And I have no health insurance.
I am hoping to be able to take something like two months on and at least six months off. My  oncologists said he prefers to give his patients Lupron or Zoladex three months injections. But of course in my case that's not possible because I cannot tolerate the side-effects. I'm still recovering from a single injection I had 2 1/2 years ago which nearly killed me. He did go on to say that at my age it might be probably better to ignore the cancer because it was unlikely to kill me as I have quite a few other comorbidities. But I don't accept that, because I have survived and overcome so many life-threatening situations in my life. I'm hoping that I could continue the Casodex intermittent therapy for a few years

Old Salt
Posts: 720
Joined: Aug 2014

At 85 you are most certainly allowed to do your own thinking!

It turns out that there is a report in the medical literature that reports a similar approach. Moreover, the authors report a positive outcome:

 

Case Rep Urol. 2015;2015:928787. doi: 10.1155/2015/928787. Epub 2015 Mar 26.

Long Term Progression-Free Survival in a Patient with Locally Advanced Prostate Cancer under Low Dose Intermittent Androgen Deprivation Therapy with Bicalutamide Only.

Abstract

Androgen deprivation is a common treatment option in patients with locally advanced or metastatic prostate cancer. No case of long term treatment with an intermittent approach with only low dose bicalutamide (50 mg daily) has been described yet. We report a 60-year-old patient, initially presenting with a PSA elevation of 19.2 ng/mL in 1996. After diagnosis of well to moderately differentiated prostate cancer by transrectal biopsy, the patient underwent an open radical prostatectomy. Final diagnosis was adenocarcinoma of the prostate, classified as pT3a, pR1, pV0, and pL1. Adjuvant intermittent androgen deprivation therapy with flutamide 250 mg was applied, which was changed to bicalutamide 50 mg once daily when it became available in 2001. Six on-phases were performed and PSA values never exceeded 20 ng/mL. The patient did not experience any serious side effects. To date, there are no clinical or radiological signs of progression. Current PSA value is 3.5 ng/mL.

Free PMC Article

Old Salt
Posts: 720
Joined: Aug 2014

PS#1: You are probably aware that Casodex has side effects; watch out!

PS#2: There are several generic forms of Casodex. Although you wrote the opposite, I strongly suggest that you take another look for the situation in your country. The generic name of the drug is bicalutamide.

PS#3: In the USA, getting a drug from a hospital is often many times more expensive than getting it from a pharmacy.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

HI Tony

Glad to know you are doing well.

Regarding the Casodex issue, you have mentioned before on your Thai/ Malaysia hospital’s pill price. Generics are cheaper and may be purchased online or via a family member living in another country (England, USA, etc). In neighbouring India the Medibridge India Pty pharmacy sells it at US1.43 per pill. You could try to contact them by e-mail or phone and inquire about their local agent (if any) or ways of delivery. I read of some Canadian patient importing them.

Their site is in this link;
http://cancercurepharmacy.com/Anti-Cancer-Drugs@4-Generic-of-Brand-Casodex-Bicalutamide-buy-at-Lowest-Cheapest-High-Discount-Price.aspx

Your post in 2012 was this; http://csn.cancer.org/node/246504#comment-1280229

I think that you are doing it right in taking the drug intermittently. The thresholds used to trigger the on/off periods seems perfect and the cancer responds well as verified by the PSA results. These, thought, may become shorter in the long run so that you will have to increase the daily dose (50 to 100 to 150 mg) when the time is right. You could also change to other antiandrogen (which may be cheaper in your place), like flutamide, nilutamide, cyproterone and chlormadinone. If at any occasion you see that the PSA does not go lower when taking the drug, then you must stop it because it may be feeding the cancer.
Antiandrogens (Casodex, etc.) are made up of a similar bio structure of the real testosterone to fake the cancer. It attaches well to their androgen receptors (cell’s mouth) stacking/preventing its possibility in absorbing the real testosterone. This procedure works well until the time when cell mutate (modify its AR) and start feeding on the bicalutamide itself, as verified with a surge in the PSA while taking the drug.
Typically withdrawing the Casodex will cause the PSA to go down again. The action is well documented under the name of “Antiandrogen Withdrawal Response or Syndrome”;
http://www.medpagetoday.com/resource-center/Innovations-in-Prostate-Cancer/Antiandrogen-Withdrawal-Syndrome/a/44930

 

The symptoms you have experienced could be due to an interaction between bicalutamide and other medications/supplements or food you taken for other illness/purposes. It could have been a temporary affair that may not occur again if you are careful. In fact bicalutamide is prohibited with certain typical over-the-counter drugs that may be in use in your place, such as Astemizole, Cisapride, Terfenadine, Warfarin 8blood thinner), etc.

Please read details in this link; http://www.drugs.com/sfx/bicalutamide-side-effects.html

“….drug interactions occur when it is taken with another drug or with food. Before you take a medication for a particular ailment, you should inform the health expert about intake of any other medications including non-prescription medications, over-the-counter medicines that may increase the effect of Bicalutamide, and dietary supplements like vitamins, minerals and herbal, so that the doctor can warn you of any possible drug interactions.”

Best wishes for continued success.

VGama

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Admittedly, I don't know very much about androgen deprivation therapy (ADT) because I've never been faced w/the choice myself (yet) but just thinking "what if" -- given some of the horrendous stories about the side effects of ADT medications (including but not limited to casodex) as well as the cost -- wouldn't it be simpler and cheaper to just get an orchietomy (ie., physically castrated) if testosterone reduction is the ultimate goal?

Of course, all men are attached to their "balls" and I certainly dont want to lose mine, especially since I still have an active and enjoyable sex life but -- given the choice between possibly dying from PCa or being able to continue to have sex -- I think that I probably would choose physical castration over the vagaries of ADT medication. 

Of course, if the orchietomy doesn't work, the effects are not reversible but, if ADT fails, you're pretty much in the same boat in terms of the limited prospects for mortality and being limited to chemotherapy as your treatment of last resort, in which case, your sexual potential would be the last thing on your mind.

There has been at least one previous thread posted about the choice between orchiectomy and ADT on this forum (see: http://csn.cancer.org/node/148822) but, apart from that, there has been relatively little dicussion of what to me seems to be an obvious (and perhaps better) choice than suffering through ADT. 

Perhaps we should be talking about it more as an alternative to ADT.   Just a thought.

Old Salt
Posts: 720
Joined: Aug 2014

Orchiectomy has side effects that are not unlike those associated with hormone therapy (ADT).

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Just to be clear.  I am not advocating orchiectomy over ADT medication per se. 

However, my impression from comments posted about various ADT medications by people on this forum over time has been that apart from some possibly very serious allergic reactions, ADT medications can have side effects FAR beyond those normally associated w/an orchiectomy

Compare these webpages on of side effects for an orchiectomy:

http://www.webmd.com/prostate-cancer/orchiectomy-surgery

vs. ADT medications:

http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-treating-hormone-therapy

What stands out for me from the 2nd page is:

"Some research has suggested that the risk of high blood pressure, diabetes, strokes, heart attacks, and even death from heart disease is higher in men treated with hormone therapy, although not all studies have found this.

Anti-androgens have similar side effects. The major difference from LHRH agonists and orchiectomy is that anti-androgens may have fewer sexual side effects. When these drugs are used alone, libido and erections can often be maintained. When these drugs are given to men already being treated with LHRH agonists, diarrhea is the major side effect. Nausea, liver problems, and tiredness can also occur."

Like the choice between surgery and radiation treatment at the outset for PCa, each man has to make his own (hopefully informed) decision about which treatment path to take.  I have always been a very outspoken advocate against surgery for the treatment of PCa whenever possible. 

However, ironically, when it comes to orchiectomy vs. ADT medication, I'm coming down on the side of orchiectomy (ie., surgery) over ADT medication because (unlike surgery for PCa) the consequences are not dire and its effects can be less traumatic than those accompanying ADT medications.  Orchiectomy also elminates the need to worry about the various ADT treatment protocols, such as "early vs. late," "intermittant vs. continuous." combined androgen blockade" and/or "triple andogen blockade" which just further muddies the waters.

My only purpose is raising the topic is to sugges that men look into orchiectomy as an alternative to ADT medication in case they have not considered it previously.  Fortunately, I do not have to make this choice yet but, for those that do, it seems that orchiectomy is a logical (albeit somewhat overlooked) alternative. 

 

 

Will Doran
Posts: 207
Joined: Sep 2015

Swingshiftworker,

 I agree with you.  I was diagnosed with PCa two years ago.  I elected to have a robotic assisted Prostatectomy.  After complications with the surgery, which took 5 1/2 hours, I was home from the hospital the next day. Robotic Surgery is the way to go with this disease.  My PSA was a 69 when I had the surgery. I was diagnosed as a late Stage 3 or early Stage 4.  The cancer had gone into one lymph node (it was so small that it didn't show up no my MRI's).  I have been treated very aggressively as a Stage 4.   I had 8 weeks of radiation, and was put on Lupron a month before the radiation treatments started.  I've been on the Lupron for two years. One month after the Surgery my PSA was at <0.010.  It remains at that level after two years. So, the Lupron did it's intended job. However the side effects have been terrible.  I am on my "last" Luporn shot now.  I will go off the Lupron in February 2016.  However my doctors have told me that the side effects will linger for up to a year.  We are going to monitor the PSA and if it stays down, Then I will stay off the Lupron.  However at this time my doctors are saying if the PSA starts to come back up, we will have to do some sort of ADT for the rest of my life.  I had aggreed to have an Orchiectomy a year ago, because I was so miserable with the side effects of the Lupron..  I was and still am suffering from the side effects of the Lupron.  At times I can barely walk.  I am in Physical Therapy for the side effects.  PT seems to be helping.  However, this last Lupron shot has hit very hard.  My doctors at first didnt' want to do the Orchiectomy last year.  They wanted to see if I would stay at a PSA of <0.010.  So, I agreed to stay on the Lupron.  At this time, because of the side effects, my Doctors have said that if my PSA should start to come back up, then we will go along with the Orchiectomy instead of going back on the Lupron.  The "basic" side effects are the same.  However it's all the other side effects, as far as muscle weakness in the hips and legs, Joint and bone pain and all such side effects that have made my "quality of life" terrible.  So, after much research, I will go forward and have the Orchiectomy if my PSA goes back up to being over .2 . My testosterone is now at 17 from the Lupron.  My doctors want to keep it under 20.   I am 69 years old at this point.  I've been told that my situation, at this time, and after two years, is puzzling to my doctors.  They really can't understand why I'm at <0.010 PSA after where I was two years ago. Again, I guess I can thank Lupron for what it has done for me,  However I can't go on living with these side effects from Lupron.  I've read over and over that many men who suffer all of these side effects end up selecting to have the Orchiectmy done and then their "Quality of Life" improves.    My doctors are telling me the same thing and thus will do the Orchiectomy if it is needed. 

Old Salt
Posts: 720
Joined: Aug 2014

If you had such bad side effects from Lupron, he should have suggested another drug such as Firmagon (degarelix) or Zoladex (goserilin). All these drugs have side effects, but they are not necessarily the same for an indidual.

Moreover, several statements in your post are (way) too general, like

Robotic surgery is the way to go with this disease.

I hope you will consult an oncologist who specializes in prostate cancer for more information before you make a decision regarding orchiectomy.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Old Salt:  From your comments, it sounds like you are generally opposed to the idea of an orchiectomy if some ADT or other hormone treatment would work.   You're entitled to your opinion but if that's where your coming from you should just say so.

I think I'm as about objective on this topic as anyone can be because I've never had to resort to ADT or hormone treatment yet BUT Will's story is not unlike many that have been already posted on this forum (a simple search will reveal them) by men who have horrendous experiences using ADT treatments.  So, I don't think his "problems" w/Lupron were just his doctor's fault.

Fact is, ADT drugs can have vastly WORSE effects than just cutting your balls off.  Theoretically, the effects of ADT drugs are reversible when you stop taking the drugs BUT when, if ever willt hat happen?  Often NEVER when you have to resort to ADT treatment in the 1st place.

So, as an objective observer, if I ever am adivsed to take ADT medication, I'm just going to tell them to cut my balls off and see what happens.  Replacement balls can be inserted so at least it seems like they are still there.  If it works, great!  If it doesn't work, I'll live w/the side effects for as long as I'm around and will endure the other treatments (whatever they may be) until they bury me. 

I'm 65 now and still have a good sex life post CK radiation treatment, but if my cancer comes back and I have no other choice, cutting by balls off and enduring hot flashes, enlarged breasts and/or lack of erections and sex will be fine for the next 10-20 years that I may have left, even if these effects cannot be mitigated by taking testosterone supplements because of the risk of recurrence of PCa.

Just my 2 cents on the topic.  Ciao!

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

I, too, opted for castration, and I also took Casodex for one year.  Dr. Tan thinks that if you get castrated, then taking Casodex is not necessary.  The year following this was the worst year of my life.  I did post about it here.  I lost 35lbs of muscle, became as weak as a woman, cried a lot, could not sleep, got lost in the Mall, was emotionally upset and in horrible shape.  Now, I do not take casodex and feel great.  I was 80 at the time of castration, so it was not as big a deal as it would be for a younger man.  But I will say that cutting off all your testosterone can make your quality of life very close to 0.  

love, swami rakendra

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Thanks for your response.

Were the negative side effects you reported the cause of the orchietomy or casodex or both?  I think you are saying that the major negative side effects stopped after you stopped taking casodex.  Was that what happened?

Even so, you also say that your qualify of life dropped very close to 0 following the orchiectomy which completely stopped your production of testosterone.  Can you be more specific about how the orchiectomy alone has affected your quality of life in that way? 

Also, even though it seems counterproductive, have you had any discussions w/your doctor about possibilty taking testosterone supplements to improve your quality of life w/o measurably increasing your potential for the recurrence of PCa?

Will Doran
Posts: 207
Joined: Sep 2015

Gentlemen,

My doctors and I did discuss other treatment options. They are very conscientious, and working very hard on my case.   Because of the cost, Medicare suggested that they put me on Eligard.  The side effects were even worse, and the Eligard cost even more than the Lupron.. We have talked about changing treatments, but becasue of me being a Stage 4, they need me to have my testosterone below 20.  20 is the lower level for a woman.  And, I understand that.   Robotic Surgery was "The only way to go", as far as my situation. I wanted the cancer removed. My prostate was the size of a small orange, and was 40% involved with the cancer. I saw the MRI pictures. They were done with contrast Imaging, and thus the cancer shows up bright red on the MRIs.   My doctors have all been very good at showing me every aspect of my tests.  They all know that I do much research about my situation. As it turned out radioactive seeds would not have worked because of a defect where my prostate was adhered to my bladder. I was told that if I didn't go through all of the surgery, 40 Radiation treatments, and two years of Chemo (Lupron), my chances of survival would be about two years.  So, doing the agressive treatment that my doctors suggested, has me over that two years at this time.  They are still, at this point, talking that I should be OK 10+ Years.    I have no sign of spread to the bones or any where else in my body, at this time. Just one very small spot in one lymph node.  The lymp nodes were removed at the time, during the robotic surgery  The spot was so small that it didnt' show up on my MRIs.  My reasoning is that since we have made it this far, I want to be assured that we have done everything possible for my survival.  I want the peace of mind knowing that as often happens, the Lupron wears off after 2 - 3 years and will not control the cancer any more.  That is if there is any cancer left in my body.  I was talked to about that by all four of my doctors.  My chemo oncologist, My radiation oncologist, my urologist/surgeon and one of his consulting surgeons in the same practice have all talked to me about the possibility for the "possible" remaining cancer becoming immune to the Lupron, and that my PSA might comeback up. 

At this time we are going  to go off of the Lupron, which will linger for up to 12 months past stopping the treatment, in February.  If my PSA stays at "0" we will continue to stay off the Lupron, and not do the surgery.  If my PSA starts to come back up, then we will decide whether to start the Lupron  again or do the Orchiectomy.  I still want the "Peace of Mind" that we have done all we can to keep me in remission.  My doctors are still "puzzled" (in their words) as to why I am still listed as cancer free, because of where I started out at a PSA of 69 and being a Stage 4.  So, we are going to do what ever is necessary to beat the odds.  They have even had genetic testing done to see if they can locate a gene that might be helping in my situation. 

I addition to my Prostate situation, I am also dealing with Melanoma.  I had a melanoma removed 10 years ago, with follow up surgery and lymp node removal.  We thought we were ahead of that.  However last year The melanoma started up again.  I have had 12 Melanoma surgeries in the last 14 months with follow up surgeries.  My new oncologist for melanoma (former student of mine) is working very hard on this.  She's catching them in very early stage 1 or pre melanoma.  I will, again be going to Hershey, PA for more genetic/DNA testing  with the melanoma.  The melanoma has started up, because of the Prostate diagnosis.  There are many studies and testings going on about the fact that men with prostate cancer seem to be more at risk for melanoma. So, we are adding another Oncologist to my list.  He will work through this with testing and see what he can find.  He is very involved with the relationship between Prostate Cancer and Melanoma.  So, they think I will help him in his research.  My doctors are all in contact with each other on a regular basis.  I am now, only going to Radiation Oncology for a check up at a once a year basis, and I only go to Chemo Oncology every 6 months.  At this time I go to and will continue to go to my urologist/surgeon every 4 months for testing and my dermatologist every 3 months.  So, they are all working very hard with me in this battle.  God Bless them all.

All of we cancer patients are different, and all must be treated on an individual basis.  No two cases are the same.  My doctors have driven that home to me over and over.  I have gone in with printed copies of studies and they always read them and talk them over with us (me and my wife).  Most of what I've learned does apply to me,  But some of the stuff you read might not apply to your case.  I've learned that from many people ands places.  So, what is right for some people will not work for others. 

I feel the main reasons for my "success" at this point, is all the support from my doctors and especially my wife.  She has been so much help and given me so much strength to keep fighting.  And then there is always the Power & Help from God. 

Peace and God Bless to all and May we someday find a cure for all cancers. 

Old Salt
Posts: 720
Joined: Aug 2014

With your explanation, the treatment that you were offered makes a lot of sense. I was sorry to read that you also have to deal with a recurrence of the melanoma. That's a very heavy cross to bear.

I am going off on a limb now, but the immunotherapy to combat melanoma (Ipilimumab) is also being tried (!) for prostate cancer. I don't know if any studies have been published as yet to see if 'Ipi' is effective towards prostate cancer, but it may be something to mention to your team of doctors if the melanoma spreads. I obviously hope that that won't be the case. 

In the meantime, it is great that the Lupron treatment did knock the prostate cancer down to almost nil. Let's hope for a long hormone therapy 'vacation'. Your quality of life should improve significantly as the Lupron wears off (slowly).

Will Doran
Posts: 207
Joined: Sep 2015

Old salt,

Thanks, I'll mention this to my doctors.  I'm writing the name down and will share it with the Oncologists at Hershey on Tuesday (Nov 3rd).

Thanks, and Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Hormonal therapies (ADT) interfere with the way hormones are made or how they work in the body. One needs to know about the “action” of the drugs in the treatment to understand the underlining reason of the symptoms experienced by the many, and the drug’s effect on the cancer.

In principle, apart from a fewer types, all prostate cancers need testosterone (androgens) to survive. Approximately 90% of circulating testosterone in our body is made by the testicles, but the (10%) left amount is made by the adrenal glands (and the proper cancer cells if it becomes essential for their survival).

The purposes of ADT, therefore, are to cause castration (suppression of testosterone in circulation) or to prohibit cells from absorbing androgens. These different two ways are achieved with different drugs, such as Lupron and Casodex. In other words one cannot substitute the other. However, castration can be achieved surgically (orchiectomy) or chemically (LHRH agonist drugs) via a disruption of our endocrine signaling system.
None of the above is 100% effective to all cases of prostate cancer, in particular to unaffected types of PCa or when these start producing androgens themselves (refractory cases).

Accordingly, orchiectomy may be a substitute to Lupron (LHRH agonist) but not to Casodex. Those 10% amount of androgens circulating in the body would not be affected even if one “cuts its balls”, castration (as SwingSW points above). The difference in the treatments will be expressed more by the causes of symptoms. Orchiectomy will be related to symptoms due to lack of testosterone (similar to menopause) and Lupron will relate to the same list in addition to the effects it causes at the pituitary (endocrine signalling system). In fact these are responsible for the majority of those nasty cases, including disruption in the thyroid functions. Casodex will affect the activity of cells and organs. It binds to the androgen receptors (AR) of cells even to those not prostatic.

One can think that most of the symptoms of orchiectomy are experienced by those taking Casodex but on the opposite, Casodex would not interfere in the effects that the testosterone has in other system functions as chemical messenger, (an example; the “baddy” cholesterol that is used to manufacture testosterone would be higher in circulation in a case of orchiectomy).

 I hope Rakendra tunes in to explain details of his orchiectomy experience. In any case, one would expect the typical symptoms occur due to the lack of testosterone (hypogonadism). Lupron and Casodex will add symptoms due to these drugs action in other body functions and/or due to interaction with other medications, food and supplements.

Here is a list of symptoms of hypogonadism and their causes;

http://www.medicinenet.com/low_testosterone_low_t/article.htm#low_testosterone_low-t_facts

http://www.webmd.com/men/features/low-testosterone-explained-how-do-you-know-when-levels-are-too-low

 

Here are the probable symptoms of Lupron and Casodex;

http://www.drugs.com/sfx/lupron-side-effects.html

http://www.drugs.com/sfx/casodex-side-effects.html

Best,

VGama

Will Doran
Posts: 207
Joined: Sep 2015

VGama,

Thanks for the links.  The side effects that are shown on both the Casodex and the Lupron links are  what I am dealing with, at times.  I am dealing with some of the side effects on the Casodex list, even though I'm on Lupron.  I have seen lists like this on other web sites, but not lists as complete as these.  God willing, I have three more months on the Lupron, and then I hope to be off it "for good".  However the chances of that?----------Who Knows.   One is never completely "cured" of Cancer.  There is always that risk of it coming back hanging over you head.  Therefore, it's "live one day at a time." Enjoy the good days and deal with the bad days the best you can.  The side effects come and go, depending on how far I'm into the time of the shots (4 month).  The worst used to hit in the second month and then start to subside as I got closer to month 4.  However this last shot hit really hard in the second week.  Now, at the end of the first month, the side effects are changing and coming and going with the day.  My doctors have informed me that the bulk of the side effects will linger 4 months past the end of this last shot, and then some of the side effects will linger for up to a full year after going off the Lupron.  However if after the first 4 months (post Lupron) my PSA starts to come back up, then we will have to decided what to do.  I have already been informed that the adrenal glands produce some testosterone, and that even if we do the orchiectomy, I might have to be on some sort of weaker ADT to hold that down.  But my Doctors/Oncologists are also saying they need to keep my testosterone at 20 or below.  I'm at 17 at this point.  They are watching my cholesterol and red cell count very closely.  My red cell count is down a tiny bit, but still within the acceptable range.  My cholesterol is and so far remains very good.  They have me do complete blood work (5 pages of results) at times and all my counts continue to be acceptable, except for the testosterone level. We do PSA, Kidney Function, Testosterone, and Blood Calcuim tests every 4 months.  So, they are on top of all of that. My Blood Calcium is very good, and my bone density is acceptable. We do an MRI with Contrast Imaging  every 6 months to check for any possible cancer that might still be there.  So far I am "clean".  We have to do MRIs because of the amount of radiation I had.  They won't do CT Scans at this point.  The thing we don't understand is why, with my testosterone down at 17, why my melanoma has fired up, after 10 years. Melanoma is also fed by testosterone.  That's why I going to Penn State Hershey in Hershey, PA.   The Skin Cancer Oncology Doctors are going to do DNA tests to try and locate why the melanoma has come back.

VascodaGama's picture
VascodaGama
Posts: 2958
Joined: Nov 2010

Will

I am sorry with the added burden you have to endure for the recurrence of the melanoma. I have followed your story with interest since you post it last September.
https://csn.cancer.org/node/296146#comment-1513869

I recall that you included DNA profiling in your diagnosis which influenced the choice of treatment and its protocol. Your Gleason sore was 7 but the aggressiveness of the cancer was measured via genetic testing. Such made your doctors to recommend a complete radical approach combining prostatectomy plus radiation plus ADT (hormonal). In December it will be two years since your prostatectomy. This month they have administered your last Lupron 4 month-shot, to complete the treatment.
From your description Lupron kept the testosterone at castrate levels (less than 30 ng/dL) for the whole period and the PSA has been low at 0.01 (ng/ml), coming from a high PSA=89 before surgery.

At this moment nobody knows if the low PSA is due to the radicals (RP and RT) or if it is masked by the ADT. The final judgement shall be done at the time you have recuperated completely from castration, when the Lupron effects clears off and the Testosterone returns to normal levels. You may see it occur approximately on the fourth moth post the end of the Lupron’s effectiveness in June 2016 (4+4=8 months). The success will be verified through periodical PSA tests. Typically remission is considered when the PSA is lower than 0.05 ng/ml. If for any reason recurrence becomes apparent (constant increases of the PSA) then your case will be diagnosed as systemic which leads to a different protocol in the therapy.

In that respect, I think that it is too early for you to be worried and discuss about the need for additional therapy. I would recommend you to celebrate the low PSA and enjoy life. Hypogonadism causes emotional changes with decreased motivation, depression and stress. It may be playing a trick on you. How about planning a trip to that special place. It will give you peace of mind.

Best wishes,

VG

Will Doran
Posts: 207
Joined: Sep 2015

VG

I should make a correction of a typo in the post from September. My PSA was at 69 when I was diagnosed.  Not at 89. Sorry for that typo.

I'm trying to stay positive.  I continue to do 90 - 100 minutes per day on my tread mill and trainer bike, plus my free weights and other exercises.  Now, since I switched Physical Therapy places, they are actullay working on the correct areas and my legs seem to be gaining some strength. I have 30 minutes of daily "Home PT" to do each day. It's when I'm on my feet and doing weight bearing "stuff" that the weakness shows up after a bit of time.  On the bike, I'm fine. I can "ride" forever. Non weight bearing exercise. Three years ago, I was riding a road racing bicycle up to three hours per day, and actually riding and keeping up with the kids from the Penn State Cycling team.  Oh how that has changed. I no longer feel safe on a road bicycle and thus have given my road bikes to a friend (one of my Radiation Therapists) and he is really enjoying them. 

One of my biggest fears is that the numbness in my hands continues after I'm off of the Lupron.  I was a music teacher and I am a Pianist.  Numb hands don't work very well when you are playing a big grand piano.  But, I keep working at it, and, so far am doing OK.

I live one day at a time, and when the sun shines, as it is today, and the leaves are in full color, I thank the Lord I'm getting to see it once again.  It became so hard for me to get in and out of my Corvette.  So, I traded it in and got a 2015 Dodge Hemi Challenger RT.  Every chance I get, I take my wife out for drives all over the country side.  Just the sound of the Hemi V8 makes me grin.  I've always loved to  drive a Sports Car or Muscle Car. I've had one or the other all my life.   My Challenger is my biggest and best form of therapy.  So, I have that outlet that I can enjoy with my wife.  And we do it as much as we can.  We patients all need something to look forward to doing as long as we can.  As you suggested.  I've lost my Cycling, but still have my Music, Exercise, Yard Work and Driving and love of Muscle Cars to keep me going. 

I'm still able to do some of my lawn work and I take pride in that. I try to do my big, open back yard to look as much like a baseball field as I can.  I've gotten pretty good at doing plaid patterns in the grass with with my John Deere tractor and mower. My wife has picked up some of the "on you feet jobs", and does a great job.  We like to work outside together and do it as much as we can.

For the first time in three years, we are actully going to put decorations up for Christmas.  I'm looking forward to that.  It's going to be simple.  Just greens and an old french horn (real) and ribbon on the front split rail fence. But,  I've decided I'm going to celebrate by doing some holiday decorating.

I'm very thankful for all the help I've gotten from my doctors, oncologists, and therapists. Plus the very strong support and encouragement from my wife. I thank God every day for all of them.

Peace and God Bless to all.  May we all live to see a real cures for all cancers

Will

 

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

http://csn.cancer.org/node/280041

This is an old post I made about side effects and the evil effect it had on my life.  I will add one more effect.  I have never been a sweater.  However, after Casodex I would break out in sweat about four times a day.  And it was so severe that the water would really drip off of my face.  I had bad experience with Casodex.  I talked at length with Dr. Tan about this.  He definitely said that if he had been my doctor he would not have recommended Casodex with the castration.  I also asked him about TRT.  He said he only gave that to patients with low energy levels, and that that was not me.  My emotional upset was very severe.  I would cry three or four times a day.  I had no strength.  I would get lost in the Mall and it would take me a few minutes to figure out where the restaurants were or where the cab stand was.  I was becoming helpless almost.  When I  stopped the Casodex, I recovered.  My Psa in the beginning was 300, but now it has stablized at 3.14.

      I would also like to mention that without the support of my wife, I would have been lost.  If family members are reading this, they must be aware that their man may go thru some very drastic changes, and the amouont of time that this lasts is unknown.  My wife just supported me in the way I wanted to be supported and did not interfere in any way with my problems.  There may be severe mental issues with a man facing a curtailed life or death, and few are prepared in any way to deal with impending death, either the death of a loved one or their own death.

     Suppose a beautiful 14 YO girl gets Meningitis and dies within 48 hours.  There will be a lot of hand ringing, crying and wondering why and how God could do this to such a beautiful person at such a young age.  I see it this way.  The girl has acomplished what she came on earth to do.  It was time for her to leave.  Her death is not about her.  Her death is about those left living.  It is about their spiritual growth and their lessons about how to stay in the love space and learn acceptance of whatever is, regardless of what has occurred.he death of a loved one is the same.  Spirit is not born and it does not die.  It simply moves on from the body.  There is no loss.  Mourning is normal, expected and part of healing.  Acceptance of what is is always the lesson.  All suffering is caused by resistance to "What Is."Whatever happens,it is for the good of all, even if you cannot see it.  This is why I suggest to celebrate the life of the Pca sufferer and not to judge or be depressed about an event over which you have no control.

    And, Will, I want to congratulate you on your spirit.  I advocate celebrating everything that comes into your life, whether you like it or not.  And this is just what you are doing.  You are not wasting time, you are finding things to celebrate even as you are having to relinquish other things you love.  It does not make much difference how long one lives; it makes a huge difference how one lives.

Love, Swami Rakendra

Will Doran
Posts: 207
Joined: Sep 2015

Swami,

Blessings to you. 

I, to, cry at the drop of a hat.  I get depressed and then something simple comes about and I laugh and can sort of get back to "normal". 

Simple things like working in the yard, and finding a nest of Baby Rabbits (about the size of chipmunks) can make my day.  My wife and I were in the yard a number of weeks back and two baby rabbits crawled out of their nest.  The grass was a little high at the time.  I got the tractor stopped.  Waved to my wife, she came over and tried to chase the bunnies out of the way.  They were having trouble running in the higher grass.  So, they finally just laid down.  Jo (my wife) picked them up, got a small box and put the bunnies in the box and on the back porch until We finished the yard work.  When we were done, we took the bunnies to the back of the property and turned them out into the ferns.  Later the mother rabbit came over there. They still live there and every time we come to work in the yard the young Rabbits ( Now about half grown) come out of the spruce trees and ferns to watch.  They don't run, they just hang around and watch.   It's these little things that we all need to look forward to on a daily basis. The nest of birds in the front Rhododendron this spring was another.  They were Cardinals.  Watching them learn to fly was great.

We get beautiful sun sets where we live.  We are on the highest lot in the entire development.  We look westward our the end of the hosue and north west out the front of the house.  Our living area is on the second floor.  The front wall of the Living room as 3/4 glass.  We get wonderful sun sets.  We celebrate them every day we see them.  We can sit in our living room chairs and just look out and watch the sun go down.  It's great.  It's these Simple Gifts I really enjoy.  That and the love and support of my wife.

The one Joy I celebrate constantly is seeing five of my former students.  They are all in the medical profession and are treating me in one way or the other.  My doctors who are former students are:  My GP (trumpet player), My dermatologist (French Horn and Mellophone), Radiation Doctor/Oncologist-planned all my treatments (Trombone Player), Head of Radiology-Xrays and CT Scans (Trombone Player), and the one nurse in Radiation Oncology (Flute Player and Majorette)  Just seeing all of them from time to time through all this has been a blessing.  They have all been great. I thank God for them every day.

I have also had the blessing of being able to help Young Interns move forward in the studies.  I have allowed two Med Students from Penn State Hershey, who are doing their last work before Internship, work on me. They are here in State College. PA at the Main Penn State Campus. I know which incisions were done by which student.  They have worked with my dermotolgy doctors, and with me the day after my Prostatectomy, and they are so appreciative of me allowing them to do surgery work on me.  The one girl is now finishing up her Intership in California, and will be joining a practice in California when she is finished with her Internship. Two of the girls were students nurses and under the direction of the mother of two boys I taught Tuba and Saxophone to.  They were the nurses who got me out of bed the morning after my surgery and took me for my first walks and helped me with all the nasty stuff that day after.  Their teacher had them deal with every part of that morning after.  In all cases, I had to give permission for the "kids" to work with me, and I was glad to do it.  As a teacher, how could I say no?  Again, I celebrate that. 

So, through all of this and the Fight, as you say, I do feel blessed in many ways.

Best wishes, Peace and God Bless.

The Fight Continues

Will

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