Stopping Lupron?

[DalTx]

I have been on Lupron and Xtandi for 2 years and 4 months. My lupron injections are for 3 months, and with insurance it is costing me about $1,300 per injection OOP due to my $8,700 total TOOP. I'm thinking about stopping Lupron, it's such a beat down and it's made life very difficult. The fatigue alone is enough, but what it does to my brain is worse. My memory is absolutely awful, and now legal things i've missed or forgotten to handle for my autistic brother, who lives with me, are becoming a huge problem. I'm so limited to what I can do so much of the time, and forget about it as soon as it's out of sight. I've been trying to get him SSI and into a group home but dealing with the local SS office is a nightmare for many reasons and haven't made any progress in over 1.5 years. I would continue the Xtandi which the insurance covers 100%. I am stage 4 metastatic with metases to distant lymph nodes that can't be radiated without serious side effects. My bloodwork has been great, PSA is always <.05 and has been for a year or more. I also began a vegan diet 3 weeks ago, in hopes of more energy, losing weight and getting rid of brain fog. I've also made it back to the gym a few times and will be starting the Livestrong 12 week series at my local YMCA the end of August.

Anyone else just taking second line therapy?

Best to all of you!

[Howard53545]

be careful. Lupron may be keeping cancer at bay. Medicare should cover cost of lupron.

[DalTx in reply to Howard53545]

I don't qualify for medicare yet.

[Miccoman]

At this point the Lupron has totally destroyed your testicles to stop them from producing testosterone (chemical castration). If you get rid of them you no longer need Lupron (Orchiectomy, physical castration -- a minor operation). Best decision I've made on the ADT front.

Think about it: your sex life situation will not change, you will not have the on-going OOP cost, with proper prostheses no one will really know, your SEs will be less.

My mind is now clear and I feel alive again. Sure I still have hot flashes on occasion and my energy is low but with exercise and the lift from my mind being clear things are looking good from a QOL standpoint.

Oh, and the Pluvicto working so I'm not dead is the biggest plus but that's not the point here. And my MO is very disappointed that he, and their pharmacy, don't get to give me the very expensive Lupron shots any more. He did get me back on Xgeva, so at least they're getting that $5,000 from Medicare every 3 months (I categorically refuse to take it once a month at this stage and considering the length of time I've been on it).

One thing is clear to me: QOL is the most important factor in this journey. I don't want to live long being miserable and doctor-ridden, but to enjoy living as long as I can, then exit cleanly (but that's another discussion).

[DalTx in reply to Miccoman]

Thank you for your opinion Miccoman, something to think about. I've read about other men who have opted for this surgery and I admit it made me squeamish. I never thought I would even consider it for myself. I'll deffintely give this some thought and do my research on the subject . QOL is what influences every decision in my journey as well.