During my first consultation with Oncologist, he recommended monthly injections of Lupron and Xgeva, with the understanding that I would go to injections every 3 month for Lupron if well tolerated. 2nd monthly consultation, MO told me that he was changing Lupron to 3 months and I would not be receiving injection that day.
After consultation, I went to the infusion lab and the technician met me with two injections (Lupron and Xgeva). I accepted the Xgeva and refused the Lupron, per my MO’s instructions. After leaving the facility I messaged the triage nurse to make sure that I had done the right thing, and to ask her if the one month and three month dosage of Lupron were different.
The head triage nurse called me back and explained that I had received the 3 month dose of Lupron at my first consultation, which explained why the MO had told me that I didn’t need an injection. But, after thinking about the episode and knowing nothing about what I am doing, questions came pouring out…
First, the Infusion lab was going to administer an injection at my 2nd session, despite having received a 3 month dose the month before. What could have happened to me? Second, there doesn’t appear to be any safeguards in the infusion lab that will prevent the technician from administering the wrong dosage ( 3 month on first visit, instead of 1 month and a 2nd injection 30days after a 3 month injection). Third, what if I really received a 1 month dosage and was told that the dosage was 3 months. What happens if I’m late taking the Lupron? Fourth, communication.
Best I can tell everyone working in triage and the lab is new. The head triage nurse is 4 months out of school. They are drinking water through a fire hose. How can I help? What should I expect?
Tomorrow morning, I have my chemo introduction class for 1 hour at 8am. A second session for 1 hour at 8:30am and begin chemo at 9:30am. Beyond the overlapping sessions scheduled for tomorrow, I do not have any appointments scheduled at this time. I have resolved to maintaining my own schedule and am contacting triage 2 weeks before each session, prescription, and consultation to get it on their schedule. Now, how do I assure that I get the right treatment and dosage?
Finally, I know that healthcare is strained beyond belief; but I’m wondering if this is the norm? Sorry for the ridiculously long question(s).
Take care everyone!
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TMcgee
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The dose should be 75 mg per m2 over 1 hour. m2 (meter squared) is an estimate of your body surface area using the Dubois formula. Here's a calculator:
This may be adjusted based on your liver function, bone marrow function, and performance status.
You should also discuss whether you will be getting Neulasta (or similar), corticosteroids ( maybe a large dose followed by maintenance doses), antiemetics, antihistamine, and possibly iv fluids afterwards.
Had 90 minute meeting where we discussed how system is suppose to work, all of Tall_Allen’s recommended follow-up care, and scheduling.
System: The MO’s notes indicated a 30 day concentration of Lupron was ordered for initial treatment. The pharmacy and infusion lab gave me a 90 day concentration of Lupron by mistake. During 2nd consultation with MO, he told me that he was changing concentration to 90 days and I wouldn’t need an injection of Lupron. Evidently, MO had caught initial error in dosage. But, lab attempted to administer a second dosage during the secession, which was 30 days after giving me a 90 day concentration the month before, which was the second mistake.
In yesterday’s meeting, the MO admitted that their notes and the actual doses were different and Phamacy/lab didn’t review the database to verify that I didn’t need a 2nd dose, after receiving a 90 day dose the month before. The Phamacy/lab explained that the MO told me, and I was the safeguard. Ugh!
Tall_Alen’s recommendations: I actually looked and sounded smart going through TA’s suggested list of treatments for side effects and Docetaxel dosage. In the end, two lab employees verified my dosage of Docetaxel and prescriptions; and for the first time, I got to concentrate on my illness instead of worrying about my treatment. Can’t thank you enough Tall_Allen!
Schedule: I have a follow-up with MO next Thursday. As I was making the appointment for 2pm, another scheduler whispered to my scheduler, that they had double booked the 2 o’clock time for next Thursday. It’s a journey, not a destination.
As of today, I am on ADT+Abiraterone+Xgeva+Docetaxel. I’m 41 days into treatment, my PSA is .74 and I feel great. Off to play Pickleball with 3 fifty year old youngsters. Take care everyone. Sorry to bore people with questions about the system; but healthcare seems to be in crisis.
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Looks like I'm scheduled for the Moderna Vaccine tomorrow. 
Schedule for follow-up after RT, with whom and when?
PSA stable? Good? Bad? 
Lupron timing, is it critical to stay on strict schedule?
High psa. Scheduled for psma pet ct. urologist
