Initial 2006 diagnosis came through biopsy. Chose to use diet, exercise and vegan diet plus multiple herbal and vitamin supplements. Did Vit. C injections, other recommended holistic therapies.
December, 2011 was sent for further testing as alkaline phosphotase was very high. Bone scan revealed extensive bone mets. February 2012 started Lupron, Casodex and Zometa. PSA dropped from high to 7,130 to 195. Zometa stopped 9-2012 due to aggravation of Glacoma. PSA on a slow, steady rise. Xgeva shot given 12-2012 and health crisis occurred. PSA rose to 4800.
2-2013 Zytega and predinisone started along with continuing Lupron. PSA has dropped 4700, 1853 and last test 1000. Major problems presently is recovery from dramatic weight loss. Dietary suggestions include a 875 calorie smoothie along with eating whatever tastes good. No taste for fruits or vegetables. Eating well, with mostly proteins. Use Blended "greens" and "reds" powders to supplement plant nutrients.
Anyone know of someone whose PSA has remained this high and they are able to walk around?
Main problem now is the alkaline phosphatase continues to rise.
This missive is being written by wife as my eyesight is poor.
Well, so far, so good. Had a really bad bout of severe constipation with severe leg pains, back pains and loss of appetite. Suggestion to take Senna - 2 in morning, 2 in evening. Problem solved, and leg pains lessened. Still get leg pains, but is a side effect of the Xytega.
Appetite has improved some, but stomach issues still a problem. Last visit to City of Hope showed Alkaline Phosphatase dropped from 4200 to 1700, however PSA increased to 1900 from 1000.
Most blood markers showing improvement. Anemia gone, liver and kidney functions at normal, and blood tests show improvement.
Lupron has been continued as well as Zytega since February, 2013. Starting July, many physical problems with PSA rising. Currently in City of Hope Hospital awaiting information from treating doctor about what he thinks. Currently uncontrolled pain and uncontrolled fever. Pain has caused debilitation to point of being bed-bound.
Was very fortunate that the Zytega gave 6 months of quality life. Not sure what will be next.
August 16th Oscar needed to go to City of Hope Emergency because of extreme constipation, pain and bloating. He went home that night. Two nights later I called 911 as he was incoherent and sweating profusely. He went home from St. Jude on second day after extensive test showed nothing. We went back to City of Hope Emergency, and he spent 5 days in the hospital. Extensive testing revealed only that the mets were growing. He had a fever, was given antibiotics which resolved the fever. He was then dismissed into Hospice. We have been home now 13 days and he has had an excellent response to the Hospice team. Pain controlled, constipation resolved, and of course, feeling better being at home. He continues to be a walking miracle. However, it is assumed by City of Hope that their best efforts bought him an additional 5 months but medicine stopped working. The rest is up to Oscar and God.
Oscar has been in hospice now since 8-31-13. We have worked hard with the hospice personnel to minimize his symptoms. There have been some really bad days when he felt much too dominated by pain and quality of life was very low. However, as time has passed, to today, he is doing ok. I got us a Vitamix and we are using it to mix up a selection of fruits and vegetables plus protein powder. This is a very life-giving food. He also seems to have better control of pain with combination of morphine and Tylenol. The constipation is being handled somewhat ok with several medications that encourage proper bowel function. Hospice has been a wonderful support system for us.
Oscar passed away January 27, 2014. He spent 5 months in hospice, with his last month being very hard for both of us. Hospice made this journey tolerable with medication to calm him down. I hired a helper to stay with him all night for the last two weeks because he needed constant watching and someone just to be with him as I was so tired my using a baby monitor no longer worked for us.
He died at peace, and with no pain so I am glad for the use of oral liquid medications we could give him while he was sleeping.
To all of you, may your journey with this disease go as you hope.