Greetings. Diagnosed in March 2016 with S4 PSA 658. Since diagnosis, have been through quarterly Lupron and Zometa treatments, 6 rounds of chemo which ended Halloween 2016 and saw the PSA hit a nadir of 1.59. Since then, it doubled and tripled until it hit 226 in May 2017 - so MO put me on Zytiga/Prednisone combo which started June 28. So far, PSA has hit 155 as of last Monday, and I go back in three weeks. The bone pain was completely gone within a week of starting Zytiga, but is creeping back. Initial scans in April 2016 showed extensive bone skeletal mets, from head to toe and I mean toes, fingers, cranium, etc. Organs were clear of mets, and the few nodes that were affected were shrunk to zilch by the Chemo or reduced to non-readable status with the CT scanner.
Flomax daily for urination, Ambien for sleep, high protein, low fat diet most of time, lots of water and tomato juice...overall feel ok but not great. Nice to meet everyone here, and hope to contribute to the community.
Michael
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ontheroad589
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Sorry to hear you are having the challenges you describe!
The good news is there is someone in this forum how can help you! Why don't you ask any questions or guidance from our fellow PCa team and I'm sure someone can help. This is a great group - very supportive and full of good insights and suggestions.
If your mets are all in the bone and not in soft tissue,ask your doctor about xofigo.It is radium223 that attacks bone mets. I am inthe middle of a six month treatment,one shot per month and there is no bone pain. Good luck .
Sounds very familiar to me. I was diagnosed Oct 2013 with PSA 620 and widespread metastases, not quite as extensive as yours, but pelvis, vertebral column, cranium, top of one femur and ribs. No soft tissue or organ involvement.
I have had no surgery or chemotherapy (yet) and no radiotherapy except the Xofigo and luckily for me no bone pain, except for a few days when I started the Casodex, which I had been advised would happen.
After initially being on Casodex (Biculatamide) for about 4 weeks when PSA dropped to 5, changed to Xytiga (Abiraterone) + Prednisolone (only 5mg) and Zoladex (Goserelin) injections every three months. PSA dropped to 0.2 for about two years and has risen slowly to 16.7 (about two weeks ago).
My mets dropped by about 50% just with this treatment alone, then about 18 months ago had a six month course of Xofigo (Radium 223) which reduced mets again by perhaps another 10%.
Recently, I was started on weekly Alendronic acid to combat a very tiny amount of bone density loss in a Lumbar vertebra.
My diet is plenty of fresh fruit & veg,cooked tomatoes, salads, nuts, wholegrains, soya products, white fish and chicken breast. Red meat occasionally as a treat and NEVER NEVER any dairy.
I take the following in both natural form and as supplements, Green tea, Pomegranate juice, Turmeric, Broccolli, Ginger, Cayenne pepper, Garlic, Cod Liver Oil, Flaxseed oil, Vitamin D, Vitamin B12 and daily 75mg aspirin. I also take a daily statin.
Regular exercise (if you can) is an absolute must. Personally, I use a FitBit tracker and try and achieve 20,000 steps daily.
Apart from no sex life (sad, but for me, a price worth paying--I am 68) and an increased frequency of urination, I have a totally normal life and am fit and happy.
As George has said, do ask your consultant about Xofigo.
HOOAHHH, This is What I suggested to ANY MAN, You have GOT to Take charge of YOUR BODY. MEDS HELP but that Diet and EXERCISE is the 1 thing that WORKS. You gotta believe in YOU.
Sorry that you are here. Do not worry, everyone on this sight at one time was new. You are very welcome to our exclusive club! It sounds like you have already been through at lot. I wish I could give you some advice. There is a new treatment for bone mets where they inject you with a radioactive isotope that seaks out the bone mets and kills them. As I understand it, you can unit use this treatment once. Listed below is a reference article.
Thanks to all for the encouraging words and very kind welcome. I will explore the Xofigo with my MO at my next visit in 3 weeks. Until then - keep up the good fight guys.
Sorry for your aggressive pathological status. Your matured outlook and the positive attitude of sharing your experience with a view to helping the community is what I appreciate as meaningful living whilst fighting with this lethal decease. You have used 1st line, 2nd line hormone therapies and also early chemo therapy ( different types of chemo drugs also can be used ). I did not see in the list Enzalutamide ( X-tandi ). You may also use in consultation with your MO Radium 223 ( Xofigo for bone mets ), Provenge ( immuno therapy ). Paying serious attention to prostate cancer healthy diet, vitamins and supplements coupled with regular exercises will always enhance the effectiveness of main cancer treatments. Using high doses of Statins and Metformin have also proved to be useful for some individuals in the control of castration resistant prostate cancer.
Wish you all the success in your future treatments.
Challenge is NOW spiritual and Psychological my friend, you must cleanse your body of all processed foods. Up before sunrise, and sungaze for at least 5-10 minutes everyday you need the vitamin D, try 1tblspoon of applecider vinegar with 8 oz glass of water before you have breakfast. You need to develop a totally alkaline environment in your body in order to reverse this. No Im no doctor just one in the same boat as you and its More important for you to feel better and get control of what YOU are doing to combat this than to concentrate on the numbers THEY keep giving you. Im not sayin ignore them in no form or fashion. what I am saying is Get your SPIRIT/MIND right and BELIEVE in the POWER of YOU.
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The hits just keep on coming along with 4 new mets.
new guy
PSA \"undetectable\" but new mets?
First ever PSMA scan shows two small bone lesions 
Also a New Member - First Post
