Xtandi causing pain?

[ann1919]

Hello. I haven’t posted in a while. My dad, 89 years old, prostate ca since 1996, stage 4 , lymph nodes only, treated with radiation and casodex. Spread to scapula 2015. Treated with trelstar& radiation. 2018 spread to spine, ribs, femur & skull. Treated with Taxotere. 8/2018 started on Xtandi & his PSA is at 0.8. 1/2019.

He is having severe pain in his neck, back and shoulders. He does have arthritis & bone mets. He is currently on a fentenyl patch 25mcg and takes ES Tylenol He added Advil today & is still hurting. He also is using a lidocaine patch. Could the Xtandi be causing this or cancer progression? Any feedback or suggestions are greatly appreciated. Thank you.

[YostConner]

This sounds like cancer progression. Could he increase to 50 mcg fentanyl patches. I use those and oxycodone and get pretty good pain control.

[ann1919 in reply to YostConner]

I took him to the ER yesterday and they found his right scapula is fractured. That is the largest area of mets we know of. It said the area was demineralized, I guess damaged from the cancer. They put him in a splint , gave him Norco & sent him home. He’s to follow up with an orthopedic dr by Friday. I hope it’ll heal. The ER said it would take at least 6 weeks. They also saw 2 more spots on his C-2 and C- 6 spine, but did not think this was causing his pain.

[YostConner in reply to ann1919]

Sorry for the fracture. My ribs fracture easily, so I get it. I hope he takes it easy and heals.

[Shooter1]

Xtandi caused me extensive pain in belly. like 7 knives. 24 hr. pain, moderate that was manageable and sever that was totally disabling. Also joint pains, but nothing like your dad is experiencing, but we are all different and respond to meds differently.

[ann1919 in reply to Shooter1]

That is awful! I hope you are doing well.

[Shooter1 in reply to ann1919]

Much better. Cut xtandi several times and found I can live with 86 mg average dose. (two pills all week and three on Sunday). I'm one of the lucky 5% of people who have excess toxicity form higher doses of Xtandi. PSA 0.140 area and scans show all soft tissue mets gone and bone mets as scar tissue. Still not gone, but 0.130-0.140 PSA for last 9 months isn't too bad. Zero testosterone.

[willshake in reply to Shooter1]

8 months on Xtandi. Now in addition to bloating, I'm also getting pain along the left pelvic side day and night keeping me from a good night's sleep. MO says can't be cancer because PSA is down to 0.1. I'm not sure to believe that.

[ann1919 in reply to willshake]

Doctors shouldn’t think everything is exactly like a textbook. I wish they would listen more to their patients. I hope you get pain relief soon. Best wishes.

[Hammerhead1]

Ann, I’ve tried Oxycodone and Morphine, made me sleepy, but still had pain from my bone Mets. What does work for me is Advil for 100% pain relief. The trick for me is to take 3-200 mg tablets.

The risk is stomach ulcers, so I always take with a snack. I also only use the coated version of Advil.

[JimVanHorn]

I wish him well and will be praying for his healing. You are doing all you can and I wish you so much love and hope he gets better soon.

[ann1919 in reply to JimVanHorn]

Thank you! I hope all is well with you.

[FrancescaO]

Hi my dad was on xtandi with no issues..but stopped working now have prescribed Zytiga which he hasn’t started taking. He has bone mets and is scheduled for an MRI next week. He had an appointment yesterday but it was too painful for him to even lie down to have test. Like your dad, he is also having severe pain in shoulder, upper back and down arms. He is taking Norco which works okay during the day but is extremely uncomfortable at night. I am waiting on a call right now from doctor to see what else can be done. My dad is 93.

[ann1919 in reply to FrancescaO]

My dad has a fracture. I hope you can get your dad scanned soon.

[FrancescaO in reply to ann1919]

Thank you for “listening”. This can be overwhelming and helps to hear from others.

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

Thank you being such a nice daughter.

Good Luck, Good Health and Good Humor

j-o-h-n Wednesday 01/23/2019 6:43 PM EST

[ann1919 in reply to FrancescaO]

I hope your dad gets to feeling better soon. It’s so hard to see them suffer. The Norco 5mg appears to be helping my dad along with the 25 mcg Fentenyl patch. He also takes Neurontin 300mg 2x a day and 900mg at bedtime for the pain in his hands , legs and feet. He’s on a small dose of Ativan 0.5mg at night also and hasn’t been having trouble sleeping. Please keep me updated. I , like you am very worried.

[FrancescaO in reply to ann1919]

This is extremely helpful. I will be talking with doctor tomorrow. I’ve had an emotional day and your messages have been a stress relief.

[ann1919 in reply to FrancescaO]

Hey! You are welcome. I made a mistake the Nerontin is 100mg 2 x day and 300mg at bedtime.

[j-o-h-n]

Thank you being such a nice daughter.

Good Luck, Good Health and Good Humor

j-o-h-n Wednesday 01/23/2019 6:42 PM EST