Look for happiness in tough times

Ok guys the doctors are baffled but I have a question. First a little back ground on the progress of my disease. In Nov of 2015psa jumped from .9 to 3.7 after starting casadex I was sent to med onc. Rejected not high enough. Jan 2016 psa 470 this time the med onc took me. Bone scans showed bone lesions from head to feet to many to count. Ct scan showed nodules in the lungs. Mar 2016 psa over 2000 reason stated like that is military hospital test only accurate to 2000 but test measured way higher. Had port put in and was started on zometa and taxotere. Was just released from chemo with a psa of 1.8 and bone lesions less active and smaller in size. Lung nodules stable and not growing. Now the doctor wants to start me on Xtandi with the Lupron I have been taking for 3 years. Does it seem to early or am I just paranoid about the disease come back full blown. Just looking for opinions and to try to make me feel better about the change. I do not want to be on my death bed this earlier again. Pretty much wrote off by 3 doctors back in Mar 2016 with weeks to live. Guessed I fooled them. Thank you for all responses.

7 Replies

  • Chewy, my disease experience is different from yours, but I think in your situation I would jump at the Xtandi and stay on Lupron. I've had success with Zytiga for nearly two years. I'm facing a change soon, but it has kept the pain low and prevented the mets from expanding. Yost.

  • Until a little over a year ago Xtandi had only been approved after chemo (typically docetaxel/taxotare). The clinical success extending life with good quality was good. Personally, I was among the first to try Xtandi before chemo, and it worked awhile. I had no appreciable side effects. Since then I have gone through both docetaxel and cabazitaxel, and am about to start a research study using docetaxel and Carboplatin along with rapamycin.

    Hope you have good success. Keep up a positive attitude, it really helps!

  • Chewy, I was on Xtandi for 32 months and it brought my PSA down to 0.07 for 21 of those months. I started with multiple bone lesions, though my PSA was below 20. I have also been on Lupron for 4 years, now. I am now going to do Provenge and then probably Zytiga. I see no reason why you shouldn't try Xtandi. Wish you the best of luck.

  • The 1, 2 punch of Provenge immediately followed by Extandi worked for 3 years for my husband, but it depends on whether or not your cancer has the right receptor that the Extandi blocks.

  • Thank you all for the kind words I needed that after 8 years of fighting this cancer. Started xtandi today. Became very sleepy with in two hours.

  • Chewy, I found that taking my Xtandi at bed time, instead of in the morning helped some. It won't eliminate all the fatigue symptoms, but may help you get thru the day.

  • Congratulations. What a dramatic turnaround. Glad you never gave up. My treatment was not as complicated as yours. Fourteen years of intermittent androgen blockade (Zoladex and Casodex) with primary of proton and photon. Now starting on third month of Ketoconazole. Your post is titled "Look for Happiness in Tough Times" so I assume you had to be creative in seeking ways to make you happy. I am with you on that theme. I think happiness is a major component of my treatment. Two things that made me happy stand out. One was theater. For 10 years, my wife and I ran a community theater company in Western Massachusetts - she as director and I as producer. In 2003, just a year after I was diagnosed, we decided to close the company and for our final production chose the musical "The King and I" and this time I wanted to act. So I was the king. I received rave reviews in the local press and the one that I love most was being told that "I die better than Yul Brynner." The second source of happiness was organizing class reunions. In 2005, we held our high school graduating class golden anniversary, ironically our very first, unlike other classes. As class president, I was at fault that we had a late start. But after that one happy event, my classmates wanted to have a reunion every year, which we nearly had in the next 10 years. The selling point was that they know about my cancer and they urge everyone to attend because "reunions are Fred's therapy." Just knowing how much my classmates love me gives me an emotional high that makes forget that I am sick. So although most of us are now in our late 70's, we keep going. Our next reunion will be held in Honolulu next May and already 17 have signed up while another seven are making up their minds. When we add more classmates plus spouses and family members, I am sure we will wind up with at least 50 for the celebration. As usual, we will alI dust off our talents in dancing the boogie, tango, mambo, cha-cha and ham it off by karaoke pretending to be Elvis Presley, Frank Sinatra, Johnny Mathis, Perry Como, Nat King Cole and a host of other 50's legends. I am sharing my experience with everyone to reinforce your idea of "looking for happiness in tough times."

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