It has been over a month now since my wife and I traveled to England to get a dose of Lu 177. I thought I would give an update on what it did for me.
That intense bone metastasis pain completely disappeared after about 2 weeks. It was rough going and I needed 24/7 opiates to get any relief. I weened myself off the fentanyl patches and now just take oxycodone 5 mg 1-2 times per day for vague leg cramps and restless legs I get at night.
I was really hoping the extreme fatigue and lethargy would improve as well as my anorexia but unfortunately no improvement after 4 weeks. I did have more vomiting but this has resolved also.
I was supposed to get labs about 2 weeks after the Lu 177 infusion but due to my apathy I finally got them last week.
Impressively, it dropped my PSA from 3000 to 2400. This is pretty rare and from reading the literature out there it is much more common to only get drops in PSA after the 2nd or 3rd treatment. Unfortunately it hit my bone marrow pretty hard and I am pancytopenic now. Hemoglobin is 7.8, Platelets 57, and WBC 2.6. Due to my bones trying to repair themselves my serum calcium dropped to dangerous levels and was likely the cause of my night time restless legs. Serum calcium was 6.9 but more importantly my ionized calcium was 3.7. Alk Phos was 680. I was sent to hospital for IV calcium infusions and disappointedly it did not really help with the fatigue or leg pains at night. Maybe as it climbs higher it will?
Although the travel and treatment costs were very high I am glad I did the Lu 177 therapy for 2 reasons. The top reason is relief from the crazy bone pain. Those of you that are suffering from this my heart goes out to you. I could not believe how intense and relentless that pain was. Secondly this has given me extra time to get my life in order. I did my last will and testament. I returned my car. Due to my condition they kindly took it back 7 months before the lease was finished. I've been trying to do my best to make sure my wife will have everything set up for her if I am not around in the near future. Of course this does not help with the emotional pain of dealing with the death of a loved one. That must be awful for those we leave behind.
So what is the plan? My wife of course wants me around and wants me to do more Lu 177 treatments. I understand her perspective but I am really finding peace with the idea of embracing death instead of trying to swim upstream from it. I also don't think I could tolerate anymore treatments. I would hate to feel even worse than this.
We did meet with a reputable hospice company and the admissions nurse was really wonderful. For now, I will try to get my calcium normalized and hopefully get some bone marrow recovery. Despite the very little pain if this is what life has left for me at 47...lying in bed, lying on the couch, unable to help around the house, exhausted after a 3 hour visit from friends...I am not really interested in this going on for too long.
Peace to all of you.