I am Sisira from Sri Lanka. I was diagnosed for high grade prostate cancer in March 2015.
The treatment I selected was Radical Retropubic Prostatectomy ( RP ) plus Image Guided Intensity Modulated Radiation Therapy ( IG - IMRT ) plus Androgen Deprivation Therapy ( ADT 2 ) : Zoladex 10.8mg and Calutide 50mg.
My cancer staging : T2c No Mx Gleason 4 + 5 = 9
My PSA before surgery was 7.9 ng/ml and since April 2015 up to now ( checked every 3 months ) remains at 0.00ng/ml. I will continue to be on ADT for 2 years.
Obviously I am impotent since my sex nerve bundles were removed by the RP and also castrated by the ADT. Fortunately I am fully continent and suffered no other side effects from this aggressive treatment protocol. But I have joint pains in various parts of my body and do not know exactly whether they are due to arthritis or related to Pca. ADT is also supposed to cause muscular and joint pains. Doctors don't give any clear answers when your PSA is undetectable. So only the time will tell when I go off the ADT regimen.
I am reasonably well informed on the subject of Prostate Cancer and making all efforts to learn as much as possible since I want to be the "Manager of my own case".
Doctors will seldom do anything more than treating you.
The more you know the better and harder you can fight for a cure or a long term stable remission. Knowledge and Courage are my driving forces.
I am always ready to share my experience with all who wish to get in touch with me.
May relief and happiness be gifted to all who suffer from PCa and help them to lead a disease free life with their continuous efforts!
Sisira
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Sisira
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Thank you Patrick for your question and your opinion on my joint pains.
I did not receive any treatment for 3 weeks after my RP. At the end of this period before starting any treatment my PSA went down to 0.07ng/ml and thereafter, during the ADT up to now remains at 0.00ng/ml when checked every 3 months just before taking the Zoladex 10.8mg injection. ( standard test done at the same lab ). I have to take 2 more injections to complete the planned 2 year period on ADT.
Glad that you found our group and thank you for sharing with us. It sounds as if a this moment you are in a good place. Find ways to live your life in the here and now. Don't second guess prior decisions, enjoy yourself. There is a lot of good reasons in this universe to be hopeful and happy.
Your great profile already came to me about a month back from Chuck Maac saying that his unparalleled service will be continued by you unabated as he is getting too old and experiencing some difficulties at the moment.
Since then I received an interesting article from you titled "To Debulk or Not to Debulk, That is the Question".
Living in this world becomes more meaningful because of dedicated personalities like you and it gives immense hope and courage to many PCa survivors who otherwise will be left alone. This website supported by good mentoring is also an excellent source of uptodate and vital information on the subject of Prostate Cancer and proper Treatment Strategies to eradicate or mange the disease.
I am certainly looking forward to very close ties in the mutual interest and will not hesitate to seek your help if I have any question or problem.
I am glad to tell you that I have had quite a number of conversations since joining,with our group, that turned out to be both very informative and useful.
I have a small problem and hope you should be able to help me.
Most of our members are above sixty, matured and educated. Quite apart from the discussions on prostate cancer, meeting such people from various walks of life also gives a significantly valuable opportunity to exchange broader ideas with them on a much wider spectrum. These are some times not at all relevant to our subject of PCa and I feel in a "Reply" read by all, it is far from being appropriate and ethical to include such matters just because of the want of two individuals. I have not seen anyone using their private e-mail address either which could be used to overcome this problem ( May be, your policy does not allow ).
Is it possible to exchange private e-mail addresses between two members of our group with mutual consent? Or, at my request can you send it to the desired person?
You can reply directly to another member of the group without creating a general post that goes to everyone. If you click on the person's name who you want to contact you will be brought to a screen which will hen allow you to click "contact." This will bring you to a private screen where you can communicate directly to a person. You can, if you wish, also add other individuals to this private messaging system.
Thanks a lot Rich for your encouraging and philosophical words.
Regards,
Sisira
Congratulations and best wishes, Sisira. You are very fortunate that your PCa was checked at a relatively early stage and that you had the talent and resources to seek what could be a curative treatment protocol. If you have not done so, I would suggest seeking multiple opinions on your Gleason score. I am praying and hoping that you will live to a ripe old age.
But I don't want to take chances. Gleason 8,9 and 10 - the most aggressive. In addition, my surgical margins were focally positive whilst the tumor was still within the capsule. So I have taken the most aggressive treatment with no loss of time hoping to achieve a "cure" or a long term stable remission. Still nothing can be predicted accurately since I am in a "Catch 22" situation with the continuous ADT for two years. I am even prepared to imagine my case is Gleason 10 instead of 9 and fight from a worst case scenario! Not to be pessimistic, but then I will want to hit the cancer as hard as possible.
On the Gleason sum score, your advice for multiple opinions is very valid when opting for the most appropriate treatment protocol to avoid unnecessary and severe side effects of aggressive treatments. I don't think mine could have been downgraded to 6 or 7 in any case since my needle biopsy and the post surgery pathology report found the same Gleason grading. But again what you say is still valid since the pathologist is the same person and it can be considered as single opinion.
I wish you God Health and Happiness for long years.
I have been on ADT ( Zoladex 10.8mg ) continuously for the last 18 months ( going for 2 years ) and have experienced almost all the common side effects except hot flashes but at very very tolerable levels. Nothing in my feet. Loss of muscle mass is also a common side effect and tenderness in feet also may be a kind of softening of muscular tissues. However, if it is causing too much trouble you may seek medical advice. I am more concerned about maintaining the following important metabolic aspects during my Hormone Therapy :
- Bone Health : Bone Mineral Density ( DEXA Scan )
- Vitamin D3 ( 25 Hydroxy Colecalciferol )
- Cardiac Functions ( Lipid Profile )
- Liver Functions ( Liver Profile )
- Kidney Functions ( SCr /GFR )
Continuous ADT may affect all the above vital functions adversely and our attention and proper management should be on these. I am glad to inform you that my regular checking and appropriate controls mainly with proper diet and regular exercise have enabled me to say "All Tip Top".
Hope you too are paying sufficient attention to the above vital health aspects.
Hi Sisira. My DX was 24 PSA and Gleason 8. I tried to see if the Gleason could be lower but no luck. So like you I decided to hit the gland hard. My primary treatment was proton beam supplemented by EBRT to take care of possible microcells in the periphery. I was advised to do 28 months of straight ADT (Zoladex and Casodex) but I elected to go Intermittent Androgen Blockade (IAB) and that gave me 14 years of remission with very good quality of life. I attribute my good fortune to my choice of primary treatment. I have now reached androgen independence and have shifted to ketoconazole with hydrocortisone on advice of my med onc. I will be 78 in January and am now less worried about not living long enough and more worried about living too long. Ha! Ha!
By the way, my good friend and fellow alumnus in college (Philippines) and roommate in graduate school at Syracuse University was a Sri Lankan. His name was Jayaprakash Ramanujam. He was the son of a Sri Lankan diplomat who was active in the international labor movement. We had a fun time learning how to take care of ourselves for the first time without our women who were all back home.
Thanks a lot for writing to me again with something new and interesting.
I was glad to learn that you have had very close ties with a Sri Lankan.
I am a retired Banker and a university graduate in Economics ( 1970 - 2006 ). During my professional career I have been to Philippines several times for seminars and conferences; shortest duration one week and the longer ones exceeding one month with various assignments. Mostly in Manila. Phillippinos are nice and fun loving people and I almost forgot home during my long stays there! Where are you presently living?
Despite your high grade pathological condition, you seem to have handled your PCa wisely and smartly for 14 years since diagnosis. Although your disease has reached CRPC status, I hopeyou will be able to survive beyond 78 with different treatment strategies and I wish many more years with symptom free survival.
As you would have seen, as primary treatment I have followed the most aggressive treatment protocol in view of the most aggressive type of cancer I was diagnosed with in March 2015 at the age of 68 : T2c No Mx , Gleason 4 + 5 = 9, and positive surgical margins. Treatment being RP + IG-IMRT + ADT2 ( continuously for 2 years ). I too was interested in going for intermittent HT after having read the book by Dr.Charles Myres - "Beating Prostate Cancer : Hormone Therapy & Diet". Dr.Myres is a strong advocate of intermittent HT and the benefits by way of quality of life are too obvious. At the same time, since ADT is a palliative treatment giving breathing space for the growing tiny cancer cells also can be dangerous in a way, especially for the highly aggressive type like Gleason 9, unless very closely monitored and resuming the cycles. You are fortunate to have had proven benefits of long term remission as well as improvements in the quality of life. On the other hand I have read that there is hardly any difference in the two approaches as far as the overall survival benefit is concerned and also following RP and IMRT both being curative treatments, continuous suppression of androgen for 2 to 3 years is very likely to wipe off the remaining cancer cells. ( this apoptosis may happen or may not happen ) and it is only a matter of time. My assumption is that my aggressive cancer may come back again sooner or very much later although my present prognostic conditions are excellent :
PSA before surgery 9.7ng/ml, after 6 weeks without any treatment PSA 0.07ng/ml, for the past 18 months on ADT, PSA remaining at 0.00ng/ml ( standard test done every 3 months ). With 2 more Zoladex in jections I will be completing my 2 years in April 2017.
Fred, if my PSA level tends to go above 0.05ng/ml ( not the undetectable >0.2ng/ml ) after stopping ADT, I don't want to use any more palliative treatment strategies and start buying time. Instead I am contemplating to use a "misle" and kill the enemy before it could take the upper hand. What I mean is use Docetaxel ( chemo ) upfront when the cancer cells are still weak and smaller in number. Majority of oncologists discourage you to do this saying the side effects are severe. But why wait until the cancer becomes castrate resistant, metastatic and more aggressive to use killer medicines and also when you are weaker in body and mind. Severe side effects can be better tolerated by me when I am in a much stronger position than the cancer- the enemy. Some innovative oncologists are already doing this but I still don't know how to convince the conventional type of oncologists in Sri Lanka. No one is specialising in treating PCa at least!
If I want to hit the cancer as hard as possible I want to take the earliest opportunity.
I would appreciate your opinion on this bold step as my next treatment strategy. Still there is time for me to decide and get the views of others.
I enjoy our conversations and I hope that others in this group also do even though the topic is not all about PCa. I'm glad you had great experiences in the Philippines and have a high regard for Filipinos.
Jay and I were still on campus at Silliman University when we both got the go-ahead from Syracuse and we agreed to be roommates. I wish you and I could get together so I can tell you stories on how we tried to learn how to take care of ourselves. They were outright hilarious if not pathetic, especially in cooking. After we both finished our doctorates, we parted ways and we wound up as college professors - I in Massachusetts and he in Texas. We lost track of each other and I hope to pick up with his family. I think he died early.
I also had the opportunity to hit the PCa hard right away. I was 63 when first diagnosed and the first uro I consulted in Boston offered a clinical trial of chemotherapy with Docetaxel. He assured me that I was young enough to tolerate it. But I shied away because I was suspicious of clinical trials plus shortly after, I learned about proton beam at Loma Linda. There were only two hospital based PBT centers then and Boston rejected me because of my aggressive DX but I was amazed that Loma Linda not only took me in but worked with my insurance company so I wound up not paying a single cent of the $65,000 bill. So I went cross-country from Massachusetts and never looked back.
If you truly believe that Docetaxel will wipe out remaining micro cancer cells and are willing to tolerate the side effects, I say "Go for it!" Brave pioneers like you do the rest of us a great favor. It's too late for me go that route. Thanks to the steroid hydrocortisone, I am able to tolerate the side effects of ketoconazole so it is all now a question of how long before I get bone metastasized. I hope that before that happens, I will die of something other than PCa. I have paid for my funeral expenses, written my will and even an obituary, filed advanced directives with my doctors, assigned estate executors, and given instructions to my family. All of these are un-Filipino but it gives me great peace of mind to know that my loved ones will never have any worries when I pass.
I really admire you. You are a great man,brave and learned!
That should be the mind-set of every prostate cancer survivor. Before going to the battle field ( treating prostate cancer ) first, one must be prepared to die. But the slogan should be "Never say die" and then keep on fighting. "Fortune favours the brave"! The human body is a fantastic living machine that refuses to give up and shut down. Knowledge and information are the most vital resources indispensable in this battle.
Thank you very much for endorsing my plan to use a missile attack ( using Docetaxel ) up front when my enemy is sleeping with "zero" PSA, without enjoying the bliss of ignorance that everything is over as the peace prevails over the years. I can understand your position because 14 years back there were no sufficient and proven trials and the treatments were more conventional. Seldom, at the initial stages one would be motivated to enter a trial associated with severe side effects such as using chemo early. However you have used your treatment regimens wisely and that is why you have completed 14 years since diagnosis although the disease has now reached CRPC status.
Ketoconazole being your present treatment protocol is quite an effective Second Line ADT.What I have learned is it effectively suppresses adrenal androgen production, but also directly kills hormone refractory prostate cancer. Therefore you should be able to gain some significant benefits. I hope you are taking the necessary precautions to safeguard especially your liver functions and also the interaction with the other drugs you are using during this treatment.
Regarding your concern about bone mets, a somewhat new concept "Oligo Metastatic Prostate Cancer Disease" which is successfully treatable has come to the fore. This is pioneered by Dr.Eugene Kwon from the Myo Clinic. You may watch his video talk which is very informative and interesting, at the following web address.
I hope more users of this blog will focus their attention on learned people like you and exchange views and experiences in the mutual interest. Your resolutions are solid and much to be appreciated. But I am sure your wisdom and right choices will reap you many more "Happy Birthdays" beyond the 78th in January next year.
My Best Wishes to you and your loved ones!
Sisira
PS: What is your nationality ? Are you a Filipino?
To answer your PS question, Yes I am Filipino by birth and upbringing. I was 32 years old when I left for the States and have been here since then. So more than half of my life was spent in America, mostly in a small town which was 96% Caucasian teaching Communication (Public and Interpersonal) to American students, believe it or not. Having had to Americanize because of my environment, I considered one of my biggest challenges to be always in touch with my roots. I am proud to say that I have achieved that and I am now truly a multicultural person. It is an important theme in my autobiographical book entitled "When God Calls." If you are interested, google my name Federico Agnir and the book title and you will be brought to either Amazon or Barnes and Noble. It is available in digital form (Kindle and Nook)
Yes, I am very watchful of drug interactions, especially anything that would not agree with ketoconazole. I have a pharmacist who watches every prescription I get like a hawk. One side effect (at least for me) of ketoconazole is hypotension, which is ironic because before taking ketoconazole, I had an unstable blood pressure and was on blood pressure medication. With ketoconazole, my systolic rarely goes above 110 and I don't take any more meds. So that's a slight benefit but I have to watch out. In fact one occasion, my darling angel pharmacist called the doctor who prescribed a new drug to tell her to either change the prescription or stop it because it would interact with my ketoconazole, causing a dangerous drop in blood pressure. As for watching my liver, I am fully aware of that too. I have a liver detox supplement that I should be more diligent with. But it's a challenge because the body can only take so much. Thank God my liver enzymes from my frequent blood tests are good.
One of my favorite songs goes like this: "I love life and I want to live. nd drink of its fullness, all that it can give. I love life, every moment must count, to glory in its sunshine and revel in its fount." One of my hobbies is singing and I concertize. That song is always in my repertoire. So I am not in a hurry to die. But it's inevitable and I am fully prepared. It is not death that is troublesome. It is dying. So I have also become an activist with Compassion and Choices, the organization that promotes and seeks the legalization of Death With Dignity. Here in Florida where I have retired since 2004, I am met with opposition when I give presentations on the subject of medically assisted dying. But I go on not for myself but for the next generation.
Sorry for my delay in replying. I was trying to find out a way to convey my replies to you which are not related to PCa, only to be read by you because others may not have any interest in reading them. I asked Joel whether we could exchange our private e-mail addresses for this purpose. But he gave a simple method to use the same site for exchanging messages privately between two or few selected individuals. I tried but I couldn't get the correct steps. So I am posting as usual. If you know how to do it tell me with the simple steps to follow.
In your last reply to me you have told a lot about you as a multicultural man. Your having become an activist with Compassion and Choices, an organisation that promotes the legalisation of death with dignity ( medically assisted dying ) is a very singular involvement. You have my vote too. But overcoming the opposition on such a controversial subject as Euthanasia will not be an easy task. Especially because people have various beliefs and superstitions due to their religious upbringing. Some people believe miracles to happen with death that they come to life again! Even today a similar controversy prevails on Berth Control and I still remember a nice poem I read during my very young days ( in upper school ), titled "Pope and the Pill"
"The Holy Father has condemned the controversial pill
Though learned experts in the church see nothing in it ill
Science has proved that it makes nobody ill
Forgive them use the pill"
By the way, your 'Filipino stories' kindled the nostalgic memories of my stays and Filipino friends as far back in 1980s, mostly when attending PDCP Bank and the Asian Development Institute in Manila. Some of the names I still remember - Carlos Torres, Antonio Narciso, Fernandez, Ma Lucita Sacramento, Ma Lourdes dela Paz and many many warm hearted people that I will never forget. I have two photo albums with pictures of them.
I managed to get at your original post, read your entire story and also listened to your favourite song "I love life and I want to live". It's very emotional and touching.
My blessings for you to live your life as long as you wish, free of any suffering!
Nice to hear from you and I am glad you like my stories. I don't know the steps to create a private conversation within this site but if you can tell me what Joel said I can try to figure it out. Otherwise, we can converse by email separately, which I would love to do. Let me know what you think.
To send private emails here, simply click on the persons name, like fredagnir or sisira and then click message (upper right side of the persons profile)
Keep a positive attitude always no matter what! Good luck with treatment and keep us informed. You will be fine! I was diagnosed in January of 2005 and it was an aggressive prostate cancer and I'm very much alive!
I'm glad that my words of wisdom helped you! Also remember to get exercise when being treated too! It helps with the fatigue. I wish you very good luck with your treatment!
I live in Sydney and had diagnosed PCa since 27.10.17 after surgery for a blocked right ureter. Currently I have a right ureteric stent and my biopsies are Gleason 5+5 from right,left prostate glands and right ureter. I am feeling fine and is not planning conventional treatment. Please check my post. I will need time for my treatment to see it works.
Sisira you sound very knowledgeable. If you wouldn’t mind reading my story I am eager for direction. Dr prognosis for me is less than a year, I’m 50 with 6 kids still not out of high school. Any help appreciated. Thank you- Joe
dale, I am not quite sure whether you have addressed your post/question to me. Nevertheless ,
I was diagnosed in February 2017
Underwent surgery ( RRP ) on 15th March 2017
Started ADT2 ( Zoladex 10.8mg + Bicalutamide 50mg ) 2 weeks after RRP and the ADT2 continued for 2 years without a break.
In the mean time, 36 sessions of Radiation ( IMRT ) total 75Gy started daily from the beginning of May 2017.
Thus ADT and IMRT become adjuvant treatments without any further delay. All in all a very aggressive treatment regimen for my equally aggressive PCa of GS9.
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Newly diagnosed advance prostate cancer
Recent Prostate Cancer Diagnose 
Diagnosed with metastatic prostate cancer 2016.
Newly Diagnosed Prostate Cancer. Gleason score 9, PSA 1.4 at age 58.
