Just wanted to give an update on my Dad's appt. on 1/31/19 with Onc. at Duke.
Labs are back and PSA is 312 actually down 43 pts. since 1/16/19 Alk Phos 726 up about 50pts. K-5.2, Calcium 8.9, AST26, ALT 16, RBC 4.27, WBC 8.8, Hemoglobin 12.2, Phosphorus 2.6, Hematocrit 37.5, Platelets 184. He is on day 6 of Xtandi and so far he's feeling fatigued around 3pm.
I'm just plain scared..this is all new to me. For the last 10 years, my Dad has been pretty stable with only ADT shots every 6mos. Now, everything is different. Bone Mets and nodes... and now on Xtandi. Knowledge is power, so any input is appreciated.
*Any known adverse reactions when Sacred Frankincense essential oil is used topically or ingested along with Xtandi?
Thank you. Kim
Written by
savingdaddy
To view profiles and participate in discussions please or .
So sorry to hear about your Dad, Kim...he is on day 6 of Xtandi and his PSA is down from January-43 points... I think you should stay the course for now and listen to the Oncologist... if the PSA drop stalls, I believe there is a trial with Xtandi and indomethacin-- and one poster here utilized it successfully when his PSA drop stalled, so you might try adding indomethacin under those circumstances .... Try and get Dad to walk...it may release some endorphins and make him feel better...it is hard when he feels tired....Best of luck to Dad...
You're a good daughter.....he is a lucky guy... God bless you and your family...
Watch for adverse reactions/toxic effects. Xtandi takes 28 days for dose he's on to reach equilibrium in his body. About 10% of us cannot handle 160 mg daily dosage and it tears us up. I've been on it for 14 mo. and settled at 86 mg average dose as the highest I can tolerate. 6 days at 2 pills and 3 on Sunday. Really worked to pull my PSA down, but side effects were awful. Now O.K. and in remission. Hope it works well for your dad without problems.
Six months full 160 mg dose. Cut back 2 months after 9 cycles of taxotere. Made me a complete invalid all by itself. Cut to 120 mg. and started to improve, 100 mg and neuropathy started to improve. 90 was better and finally settled at 86 mg as max I can handle and still function at my new normal life.
I hope and pray that Xtandi helps your father. Watch for seizure-like behavior. A common side effect. My father had a seizure on Xtandi. If that happens switch to Zytiga.
At this point I would not ingest the sacred frankinsense oil...not a Pharmacist...jus let the Xtandi work and wait till the apt on 2/20....all the best...
Trust me....being patient is hard....then the testing--the prostate specific anxiety test--I do not sleep well before them...You are at Duke and they have a solid reputation...Stay the course...for now, I lift you and Dad up in prayer...for patience, medication efficacy, and good results...
Hi, my brother was on Xtandi for a few months and then it started to 'fail'. For other reasons, he went off of everything including Xtandi. He went back on Xtandi at a reduced dosage (by mistake) after about 2 months. To everyone's surprise it started working again.
When I added Xtandi my PSA was around 95.0. It went down into the 60s in the first month, and took a couple of more months to drop below 10. A new nadir of 1.0 was reached at about 6 months. Readings bounced around between 1.2 and 2.2 for about a year. After 26 months my most recent PSA was 3.1. I'll probably be looking at new imaging/treatment options sometime later this year. My main side effect is background fatigue. My skin got drier, too. I take the full daily dose. Age 70. As they say, "your results may vary".
There is a clinical trial and some evidence that adding indomethacin helps break down resistance to Xtandi. May as well squeeze all the juice out of it that you can before moving on to another drug, if your MD is willing to try, and your kidneys are ok...
My sweetie has been taking Boswellia for about a year and a half. It is part of his Bosmeric-SR supplement.. he takes 5 a day. Better Way Health Sells it. He often does about 8 grams of curcumin a day. I like to use the one of Amazon from AFI.. I think it is called AFI Super Curcumin.(It comes in 1 gram tablets) If nothing else it helps with his pain. Sometimes curcumin can upset the stomach so you might want to take that slowly.
Also you might consider some aromatherapy. If nothing else it sure does make the air smell nice. It may help a little with inflammation.. who knows.
Hi Kim! How is your Dad on Xtandi? My Dad is about to start. Has your Dad had chemo yet? How old is your Dad if you don’t mind me asking. This is so stressful. Thanks!
So far so good! I hope it stays that way. He has never had chemo...I really hope he doesn’t have to. Feel free to go to my page and read my bio on Dad...He is turning 76 in 2 weeks.
It is very stressful. I have found this forum to be very helpful. God bless you and your Dad! Kimberly
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update on my Dad: Liver Mets, next steps?
Dad update 💚
UPDATE on my dad. A story of hope.❤️ #advancedPC
Update on my dad-PSA not budging on Taxotere 
Update on my Dad: 4 months since last PSA and Provenge
