Xtandi Withdrawal

[Stjohn24]

I am joining this group for my husband who has been diagnosed with Stage 4 prostate cancer January 2023.

He was treated with radiation in April of 2023.

He began taking Xtandi around the same time.

He receives Lupron injections every three months. The last injection was on December 22, 2023.

He has become extremely weak and is now unable to walk. He was hospitalized on December 29 with elevated heart rate, extreme weakness and confusion. He was subsequently diagnosed with AFib.

His oncologist has stopped the Xtandi and he is much worse. I believe he is going through withdrawal. He hardly speaks, has no appetite, and sleeps all the time.

Looking for help please Read more

[Tall_Allen]

There are no side effects from stopping Xtandi. He might be depressed, and may require medication.

[skiingfiend]

1. Your husband was on doublet therapy: Lupron + Xtandi.

2. Your husband experienced CV issues and your MO stopped Xtandi.

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Is your husband experiencing increased pain?

Has the MO indicated that your husband has progessed to Castrate Resistant?

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The combo L+X suppresses the cancer and can also reduce or control cancer pain. The removal of one these drugs will result in less cancer suppression and less pain control.

Ask your MO

1. if you should switch to Firmagon from Lupron (better CV profile).

2. can one of (Xtandi / Erleada) or Zytiga be added to Firmagon.

So your new doublet treatment would be one of:

a. F+X

b. F+E

c. F+Z

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This is a possible starting point for trying to find ways to improve your husbands treatment and outcome. This assumes he is still Hormone Sensitive.

I am not a doctor and this is not medical advice.

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You need to provide more details in your profile about your husbands status.

[Billiegirl11]

I'm bawling my eyes out. I hope I'm wrong. I just said my last goodbyes to my dad less than 24 hours ago. His timeline looked similar to yours , but added complication of brain bleed, and then platelets so low, they couldn't clot, made for TWO difficult craniotomies. But I just had to watch as he declined in such intense& increasing pain, that morphine every 2-4 hours barely helped his last few days in hospice😭. He had never touched a drug in his life and had only used pain medication once for kidney stones (that I know of). 2 months ago at the age of 67 he was beating my time up the climbing wall. I'm 46, healthy and fit also. This is insane and I feel so lost. I've read so many similar aggressive PC to mets to death in 18 months time, that it's really stinking worrisome.. I do wish you the absolute best & hope you can find good treatment that works all around!!! But be cautious.. 🙏🤞

[j-o-h-n in reply to Billiegirl11]

So sad.... I don't know what to say...... except "GOD BLESS".

j-o-h-n

[Darryl Partner in reply to Billiegirl11]

Condolences

[Explorer08]

I am taking both Xtandi and Orgovyx. My MO has me on Orgovyx because of potential cardiovascular issues caused by the agonists such as Lupron. I never did take Lupron. I have tolerated Orgovyx extremely well. I just started Xtandi so time will tell. I am afraid of Xtandi, however.

[Break60]

I had extreme fatigue when initially taking two 80 mg Xtandi tabs daily starting in 2021. MO dropped me down to one tab and that did the trick. Prior to starting X , I stopped Lupron and started estradiol patches which has dropped testosterone down to < 3.0 now for five years! Much better than Lupron in terms of side effects. Finally I’ve been taking 60 mg. duloxetine (generic cymbalta ) for anxiety and depression for 20 years. Has worked wonders!

[Stjohn24 in reply to Break60]

Thank you! Good to know there are alternatives

[TN1932 in reply to Break60]

I'm glad that estradiol patches working so well for you. I wish my dad could get these patches too. His dr refuses to prescribe it.

[j-o-h-n]

Where is your dear Husband being treated?

Good Luck, Good Health and Good Humor.

j-o-h-n

[Stjohn24 in reply to j-o-h-n]

He is being treated at UNM Cancer Center in Albuquerque, New Mexico

[Ravenfae]

so sorry can’t help. But sending so much love xxx it’s the most awful thing for us ladies to go through,…how to help our lovely guys xxx blessings and love to you sweetheart.. I feel for you xx

[Stjohn24 in reply to Ravenfae]

Thank you! It sure is a rollercoaster ride

[Spyder54]

St John,

Just seeing your post now Sat. 10:54 eastern.

Yes, I am on the 3 month Lupron. Inject in butt. 3 years now. PSA <.008 for last 4 3month blood panels.

So much easier than Firmagon.

I also take 1,000mg Zytiga w 5mg prednisone.

Playing Pickleball 5x per week with daily dumbbells. For muscle.