I was recently diagnosed with advanced prostate cancer. 62 years old and otherwise in very good shape. I had a radical prostatectomy back in 2014 (Gleason score 8). Everything fine since then and PSA under control (about 0.875). I developed lower back pains in about April and initially sought remedy through various neurosurgeons. However, after extensive diagnosis (a long story), the cause of the pain was found to be metastatic prostate cancer. I have lived and worked as an expatriate in Moscow (Russia) for the past 15 years but have now moved back to Johannesburg to be near to my treatment options.
So far I am OK but not sure what to expect going forward. I have been able to keep some of my work going so am quite busy. I work on exercising regularly and holding a very positive mindset. I had an unexpected collapse about a month ago; this followed a week of heavy radiation on my spine. I ended up in ICU with a haemoglobin count of around 3. I spent 4 days in hospital with no recollection of anything but since then have been fine apart from the occasional bout of short breath at night. My only treatment currently is a daily Caloxa tablet supplemented by Nexium and Valoid to control any potential nausea (no problem). I am also taking a calcium supplement 3 times a day because of low calcium levels - this low calcium level I am told may apparently have had some impact on my recent collapse.
I look forward very much to following the daily posts and learning as much as possible - and hopefully to contributing whenever possible too. I would also be very happy to make contact with anyone with similar challenges living in South Africa.
Ian
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Ian2017
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Welcome to the group Ian. The positive attitude says a lot. It is also impressive the way you have knocked down the psa, Is this just with the surgery and the radiation or have you taken (ADT) Hormone treatment to reduce testosterone, In either way I was dxed as stage 4, 11 years ago at age 49 and inoperable, and I am still here,Though on continual therapy. I did 20 laps in the pool yesterday and plan to do a few miles on the bike today, keep the faith, and positive attitude, others will reply, we are here for you and wish you the best.
Following up on Dan, if you have not been on ADT, that's something your docs are likely to recommend If you've already been on it, then Xtandi or Zytiga may be next. Hopefully you have a medical oncologist on your team. I asked mine to be the "quarterback" of my medical team, and he does a good job of it. Welcome to the group.
I like your concept of a medical quarterback. I haven't yet found mine having recently moved from radiation to medical oncology but continue looking for the right fit.
Thanks for the encouragement Dan, and good to see your achievements. The low PSA figure quoted was my last routine test done about 4 months prior to the PCa diagnosis. My oncologist, who has monitored me since surgery 3 years ago, has never before seen a spread so rapid. As mentioned, ADT hormone treatment has only just started 2 months ago and consists currently of a daily Caloxa tablet.
I did not recognize the caloxa, but I see now it is a form of bicalutamide/casodex used here in the states. I know there was some talk of monotherapy here a few weeks ago, and you seem to be responding well to minimalist therapy, I know here in the states the standard of care is to use Lupron or other agonist or antagonist such as eligard or zolodex with initial treatment with casodex/bicalutamide/colexa and as Yost replied zytiga or xtandi may be next.
I started Zoladex Jan 2015 and have continued through 8 months chemo which smashed 40 bone mets and now 14 months Zytiga. Don't appreciate the genital shrinkage but knew it should happen. PSA 0.03. There is life and hope. David
You may want to find a supplement for bone health. Vitamin K2 and other ingredients. You should also ask about treatment to prevent gynecomastia; I've heard that radiation to the breast area can work to prevent it. You won't get this preventive treatment if you don't ask for it. This is a side effect most doctors don't seem to care about but you might.
"I am also taking a calcium supplement 3 times a day because of low calcium levels".
A common cause of low serum calcium is vitamin D deficiency. I mention this because D deficiency is a PCa risk factor. Many men with PCa take vitamin D. The Vitamin D Council recommends that 25-D levels be >50 ng/mL.
I understand why you are taking calcium at the moment, but supplementation at higher levels have been associated with PCa progression. 2,000 mg & higher substantially increases risk of aggressive disease. I wouldn't use more than 500 mg /day.
Vitamin D is needed for calcium uptake from the gut. A balanced diet can provide all the calcium one needs. Greens are a good source. Dairy is not considered a good choice for men with PCa. Men with PCa often cut out dairy.
Do you take any non-PCa meds? Some can affect blood calcium status.
The lattitude of Moscow isn't favorable for maintaining year-round adequate vitamin D, & I suppose that Johannesburg will be a big improvement.
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On January 24 at 7 am...
Apalutamide aka Erleada = Good Stuff!
My Introduction - elevated psa, unconfirmed prostate cancer
Recently diagnosed and totally lost
