Update on Dad...I'm Feeling scared and sad

[savingdaddy]

Hi everyone,

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

[Tall_Allen]

Hopefully, the Xtandi will have a good effect.

[NPfisherman]

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...

All the best,

Fish

[savingdaddy in reply to NPfisherman]

Thank you for the advice and kind words. Best wishes to you as well.

[Shooter1 in reply to NPfisherman]

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.

[savingdaddy in reply to Shooter1]

He was instructed to take 4 pills a day. His next appt is 2/20th. How long did were you taking 4 tabs a day before the dosage was downgraded?

[Shooter1 in reply to savingdaddy]

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.

[savingdaddy in reply to Shooter1]

Thank you, good to know. I’m glad you are holding steady. I hope you continue to do well for a long time.

[NPfisherman in reply to Shooter1]

Thanks Shooter...I am on Zytiga, so no personal experience with Xtandi...best of luck to you...may you stay in remission for a long, long time...

Fish

[tallguy2]

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.

Good luck to you!

[savingdaddy in reply to tallguy2]

Thank you so much! Good to know.

[NPfisherman]

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...

[savingdaddy in reply to NPfisherman]

Thank you! Theres so much I read about that I want my Dad to try..but at the same time I don’t want to make Things worse. I gotta be patient I guess.

[NPfisherman in reply to savingdaddy]

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...

Fish

[savingdaddy in reply to NPfisherman]

Thank you 🙏🏽

[savingdaddy]

I will! Thank you for your input.

[chalaan]

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.

[savingdaddy in reply to chalaan]

Thank you for your input.

[RyderLake2]

You need to give Xtandi time to work. I have been on it for 18 months four pills a day and it brought my PSA down to undetectable (less than 0.008).

[savingdaddy in reply to RyderLake2]

Thank you! That is great:). I pray you continue with great results!

[ctarleton]

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".

Charles

[savingdaddy in reply to ctarleton]

Thank you for sharing Charles! Best wishes to you!

[NPfisherman in reply to ctarleton]

Charles,

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...

Best of luck,

Fish

[softwaremom00]

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.

Lots of hugs and prayers for you and your dad.

[savingdaddy in reply to softwaremom00]

Thank you, best wishes to your loved one!

[Amandaslp78]

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!

[savingdaddy in reply to Amandaslp78]

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