Posted 7/15/2015 9:56 AM (GMT -6)
Your journey is quite amazing. I am so happy for you and your family. I want that for my husband, and family.
Your diagnosis is very similar to my husband's. He was diagnosed in 12/13, G9 (4+5) with all cores positive for cancer, at the age of 44. After his radical prostatectomy in 1/14, he was staged T3b N4M0. He was told his cancer would never be cured. He has had a lot of treatment since then, all in an effort to manage his cancer, but never cure him. He went on Casodex, then Lupron in 3/14, in preparation for taxotere, as his post op psa was 64. He received Taxotere from March till June 2014. He had good response and saw his psa drop to 1.2. Remained on Lupron. In September 2014, his psa was beginning to rise and his scans showed bone involvement in his pelvis and top of femur. MO felt that the positive scans were due to cancer that existed before taxotere, but wanted to change treatment because of the increasing psa. At that point his MO sent us to NIH to see eligibility for possible trials. He was enrolled in the anti PDL1 trial, and told to get Provenege at Hopkins prior to starting Anti PDL1, for the synergistic effect. His psa was rising, he received anti PDL1 from January 2015 through March 2015, and was pulled from the trial for progression on trial with enlarging nodes in pelvis, metastasis to clavicular lymph nodes, more bone mets in ribs with discomfort in hips. He was then enrolled in another trial at NIH, Xtandi plus or minus PROST Vac. He was assigned to the Xtandi only arm, huge blow, but it was what it was. His Psa was 15 when he started Xtandi in April. His scans, as I said were worsening. One month in his psa dropped to 1.06, by two months it was 0.65. He experienced severe fatigue and hot flashes. At the recommendation of his MO he went off the Xtandi, for "QOL". No data exists on intermittent Xtandi, but that is where we are now. One month off Xtandi, psa went up to 1.06 again. Scans and bone scan show reduced size of all lymph nodes. Bone scan stable, with three new spots on ribs that they are not sure if they are new cancer or spots that are now identifiable on scan as remodeled/healing bone. NIH has agreed to allow him to hold Xtandi for another month. I have been lulled into the idea of him never being cured, so I have gone with the plan. BUT, there are times when I see or hear about stories like yours and I want more. I do not ever want to feel like we did not do enough. I do not want to look back and say that I wish we would have... Can you share with me your doctor's name? I want someone to go after a cure for him. Any and all recommendations are welcome! Thanks