At the 24 week mark of my trial at Weill Cornell, I had updated NM whole body bone scan and CTs of chest/abdomen/pelvis. Also had updated blood work. Was expecting my next 6 week infusion of Keytruda the next day.
While waiting in the treatment area, there was some kind of a delay. Nurse came over after about 30 minutes, and told me that Tagawa needed to see me at his office on another floor. I was then put in to an exam room and waited another hour or so. He finally came in and told me that the scans and blood work showed continued progression with 3 growing mm sized nodules in the lung and PSA now at 62. So I am off the trial; no Keytruda infusion and no more Xtandi.
He is recommending I start Docetaxl. Also, possibly consider DORA trial combining Docetaxl with Radium 223. I have not had any chemo to date. I had gotten info from posts on this forum, and other support group participants, that I should consider using Cabazitaxl with Carboplatin because of my BRCA2 mutation and fewer side effects.
I have an appt with Dr Saraiya, my MO at CINJ, on Monday 1/31/22 to discuss chemo and other possible treatment options. I also have a telemed appt with Dr Marshall on Wednesday 2/2/22, an associate of Dr Denmeade at Johns Hopkins, to discuss BAT treatment. In addition, I sent email requests to Dr Aggarwal at UCSF and Dr Stein at NYP for their input, as I have had appts with each of them in the past.
I will not sit around and wait too long for my next treatment, whatever that my be. We all need to be proactive and our own best advocate.
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HopingForTheBest1
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Thank you for keeping us updated on your journey! I am sorry that this trail did not help, but am glad the doctor was looking out for you. I hope you are able to start your next treatment soon.
Sorry to hear about these results, Hoping. "I will not sit around and wait too long for my next treatment, whatever that my be. We all need to be proactive and our own best advocate." Wise words. Keep on keeping on, brother! - Joe M.
If you want my 2 cents as a fellow BRAC+ I am not sure you can do Radium 223 if you have nodules in the lungs. It is a bone mets only treatment.
I will likely be shot down for this, but I would go with the BAT first, then the chemo, or even better, LU-177 before the chemo. (Hopefully we will have LU-177 by April.)
Insurance may not pay for Jevtana (expensive) before you have used Taxotere (cheap).
I would add the CarboPlatinum to the Taxotere for sure. CarboPlatinum had quite a kick when I used it, but our bodies are all different in how they respond to chemo.
Hi, I was hoping your trial would be successful, I am sorry that the trial failed. My husband also failed his third trial and started chemo- he has had three infusions so far and limited side effects. He has scans next month, PSA only has gone down 12 points so far. We are also looking for the next trial and considering BITE, BAT or others. Thank you for keeping us updated. Maureen and Lowbed
So sorry for your outcome of this 3-part trial since it was so challenging & difficult. My partner ultimately turned it down, skeptical about the suggestion of a "cure" and its pre-trial mismanagement by the Tagawa team. Your continued hope & energy to find the "right" treatment is both admirable and brave. Thank you for sharing your journey: we all learn from one another.
btw, partner is currently on Docetaxel+ Carboplatin (added after 5 infusions of docetaxel after the cancer progressed). Tolerated but fatiguing all the time. He has now had 7 Doxi & 3 Carbos; we await the outcome with the next scans.
good time to reply on this snow day:He's at MSK, Dr Karen Autio. Hard to tell re fatigue since chemo SEs are cumulative, but it seems the Carbo didn't add that much more. He intends to write u separately since he's also been following your journey. We're in NYC. If you're in NJ, would u like to set up a phone call?
I’m so sorry the trial didn’t work. I would definitely do Docetaxel if you haven’t done chemo yet. My brother tolerated it well with very few side effects. Of course that was very early on. Have you considered Car T? The downside to that is the long wait time between taking your cells out and putting them back in. Just a thought. I’m following you and keeping you in my prayers Carl.
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Xtandi+Keytruda may still work after Xtandi alone fails
