My introduction

[BrentW]

Greetings from Trinidad and Tobago. I had a PSA test as part of a routine job application in 2002, which came back slightly high -- 6.42, as I remember. This rose to 21.7 over the next two years, during which It took four biopsies (43 cores) to find that I had cancer of the prostatic ducts -- a rare type. I had brachytherapy in 2004, which failed, my PSA nadir being 2.43. Years of hormone ablation followed (Androcur, Lupron and Stilboesterol, but not Zoladex, which I could not tolerate). My cancer showing resistance in 2010, I had a radical prostatectomy on medical advice. The most soul destroying day of my life was when the surgeon told me that there was no sign of cancer, so it must have metastasized elsewhere. I have been cycling though my regime of drugs ever since. When I took a break from June to December last year, my PSA rocketed from 17 to 343. A month of Lupron brought it down to 232. I am about finish as month of Androcur and start one of Stilboesterol.

If there is a tough part to this, it is the lack of support for either myself or my wife. Neither of us is from Trinidad (I grew up in the UK, she in the Leeward Islands), so we have little family here. There have not been any support groups for people in my position (think Small Island Developing State, which might perhaps be comparable to a small town in rural North America). Thankfully (I hope), the university where I lecture has this week set up a support group for employees with cancer. I shall be intrigued to see what it has to offer.

[JoelT]

Hope that the support group is helpful and I hope that this online support group is also helpful to you.

I did notice that you did not mention that you had ever taken a few possible drugs that might be appropriate for you at this stage of the cancer. They are Casodex (bicaludamide) and Metformin. Both of these drugs are inexpensive and should be available. They both can be taken along with the other treatments.

Joel

[BrentW in reply to JoelT]

Thanks for the suggestion, Joel. I will mention the Metformin to my doc. However, I have tried Casodex; it is very difficult to summarise 14 years into a few paragraphs, so it did not get mentioned. It had absolutely no impact on my PSA levels.

[JoelT in reply to BrentW]

Metformin is a drug that is being re-purposed in prostate cancer. It is used for diabetes. If your doctor isnt familiar with it ask that he does some research.

Joel

[Jim-KY in reply to JoelT]

I'm not diabetic, but my doc at MD Anderson put me on Metformin a few years ago.  Side effects include diarrhea and gas, but I can counter that pretty easily with being proactive with Imodium and di-gel.   He likens the reasons for this one and several of the ancillary treatments he has suggested this way, "cancer is like a weed.   We go in and we cut it down, but it wants to grow back.   We want to make the soil less desirable for the weed where it will have a more difficult time to grow back".   Makes perfect sense to me and that's why I'm on several different supplements.   Diagnosed Stage 4,m eight years ago.  Still feel very good even though disease has reared it's ugly head in the past 2 years.    Have faith!

[ctarleton]

I wish you well in finding some more local or on-line support.

You may not, yourself, be anywhere near a palliative/hospice situation for many years to come, but you might consider contacting folks at either the Palliative Care Society of Trinidad and Tobago, or the Vitas House Hospice Trinidad and Tobago, and seeing what they might say about such things, .... and "life" in general, from a compassionate and understanding perspective. Some of their websites may also contain links to related materials on meaningful themes for persons with cancers or other illnesses.

You also mentioned taking an extended break from ADT treatment, and also alternating monthly treatments using Lupron, Androcur and Stilboesterol? Many advanced metastatic patients stay on a drug such as Lupron on a continuous basis, perhaps receiving it in the form of a 3-month Depot injection, rather than stopping and starting things so often. While also monitoring Testosterone levels to confirm their status while also monitoring PSA status. You might want to discuss this with your doctor and/or consider a second opinion if your symptoms/status worsen on the current treatment strategy.

I'm also sure that many others on this support group are really envious of your warm weather in Trinidad & Tobago, as they are still experiencing snowy weather in northern latitudes.

Charles

[BrentW in reply to ctarleton]

Many thanks for your reply, Charles. I will be sure to follow this up. Regarding Lupron, I have reached the point where it will only work one month at a time, with a rest in between. After one month my cancer becomes resistant. Hence my not staying on it for extended periods. Any thoughts on this?

By the way, at the risk of blowing my own trumpet overly loudly, I am very proud as to what I have achieved since my diagnosis, despite the horrid mental side effects from the drugs. See sta.uwi.edu/uwitoday/archiv... It is for this reason that I avoid Zoladex. On the two occasions I was given it, it reduced me to being a zombie.

[ctarleton in reply to BrentW]

Thanks for that link.  I read one of your research papers (the one based on sea bed samples taken of the coast of t he Carolinas).  "Glacial-interglacial contrasts in the benthonic foraminiferal fauna" is pretty fascinating stuff.  I could not help myself from mentally extrapolating such work into the next few centuries as todays world artificially releases greenhouse gases into the environment at rates that are an order of magnitude faster than during previous glacial-interglacial periods.

I, myself, have been on Lupron 3-mo Depot for about 28 months.  I tire more easily during stronger physical activity, but have learned to pace myself, and I do stay active.  I have met men, often in their 70s, who have reported more significant fatigue while on ADT, regardless of the drug.  My mental acuity, at times, might seem very slightly less rapid for the recall of names, but nothing major in my experience.  (I still do a few hundred Sunday New York Times crosswords each year.)

[CERICWIN]

I had a starting PSA of 744, three years ago, on Firmagon, Xgeva and Bicalutamide, then Avodart added.        Now I'm on Xtandi, Xgeva and Avodart.     The Xtandi has been successful for nineteen months at slowing the progression, but I now have rising PSA and severe prostate pain (it couldn't be removed because of bladder and rectum wall involvement).        The side effects of the Xtandi were severe, but I managed to tolerate them.       And support groups in person or online are very helpful and important to keep abreast on the latest developments.

The best of luck to you,

CERICWIN