More info about me.: I am new to this... - Advanced Prostate...

Advanced Prostate Cancer

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More info about me.

Defcon1 profile image
15 Replies

I am new to this kind of group, so I hope you will let slide anything I do wrong. Anyway, as post says, more info. My prostate cancer migrated to my sciatic nerve in my left leg. That diagnosis took 1 1/2 years to find. Once I was sent to Mayo Clinic in Rochester, MN, they diagnosed me in 15 minutes. In the meantime, I suffered from great pain in my leg and have lost feeling in my foot. I still have sciatic nerve pain. I take Oxycodone for that. It helps, but doesn’t get it all. My biggest problem seems to be side effects of Zytiga. Just wondering if anyone else is having same problems.

Thanks

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Defcon1 profile image
Defcon1
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15 Replies
jimhagood profile image
jimhagood

Hey friend. No ground rules for questions around here. And welcome. We are just a bunch if dudes trying the maneuver through the maze of mets PC. I am sorry for the incompetence of pre-Mayo providers. Unfortunately the experience to varying degrees occurs frequently, and to many men. I have not neither do I ever intend to take Zxtiga or any of that stuff. I conclude it all poison.

Defcon1 profile image
Defcon1 in reply tojimhagood

Thanks for responding. It might be poison, I certainly don’t know. It has kept my cancer in remission. PSA- undetectable, bone scans- negative, bone density-within norms. Something is giving me such bad side effects as I said and I want to eliminate what is causing them.

I just wanted to offer up that my husband is now on long lasting time release morphine. It has helped him. He takes oxy only for the break thru pain. It was hard to keep ahead of pain taking oxy every few hours. Zytiga was fatiguing for my husband but It was good.

JamesAtlanta profile image
JamesAtlanta

Welcome to our group. I know the feeling when you make the first post. I quickly learned that everyone is helpful ... and genuinely want to help.

I’ve been on Zytiga for 6 months. Undetectable PSA, as well. Fatigue is hard. But I combat it by staying active and exercising - even when I’m tired and don’t want to. At least walk every day.

Given your pain, are you able to exercise? If not, have you been to a physical therapist? My cancer had spread to my spine when I was diagnosed. Physical therapy helped a lot with my pain.

Congratulations on your response to Zytiga! That’s excellent!

And feel free to ask any questions- that’s how we all learn. There are no dumb questions. And someone always seems to have some insight here on just about any topic. And there are quite a few characters here that bring some fun to the site, too! 😊

All the best,

James

Shooter1 profile image
Shooter1

Went with Xtandi instead of Zytiga. Every side effect you mentioned and then some . This is day ten after cutting dose to 120 mg from 160. Vast improvement since day three onward. Feet quit burning, balance back, more energy, sleeping better,belly pains only mild and occasional instead of 24/7, toes started working again on day 9. May just have to make an adjustment. PSA from mid 60's to 0.137 at last check. Mets either less active or undetectable. Starting to feel like I might get through this yet. Good luck.

Doug-AZ

bostonmac322 profile image
bostonmac322

Have you tried any epidural steroid injections for the sciatica or perhaps nerve ablation ( it deadens the nerve for upwards of six months

leo2634 profile image
leo2634

Hi Defcon and welcome to the forum. It seems like the Brothers here are all offering you good advice and personal experiences so here is mine. I have been on Zytiga for five months along with Eligard injection only side effects are hot flashes which are tolerable and ED Which so far is managed I feel better than I have in years so don't give up on it just yet. I also walk my development four times a day ( No gym membership required) and,keep a positive attitude cancer hates that ..seek out as much information as you can this forum is a good start there is a wealth of information here. Most of all never give up never surrender live life to the fullest, do any and all of the things you've always wanted to do and don't look back.I wish you all the best and will add you in my prayers. Leo

Cmdrdata profile image
Cmdrdata

Howdy Defcon, I am on my third month of Zytiga and my last PSA is undetectable. I thank wifeofvet who donated her husband’s leftover Zytiga and I am forever grateful for that as it helped my finances on co-pay relief. Side effect wise, as many has said are mostly hot flashes and and energy. I run out of juice by early afternoon after activities, and also muscle loss. No rules here (except spam and insults), just share your personal PC journey and questions.

in reply toCmdrdata

Howdy my Friend! Glad to see that you are back to undetectables. My next appointment is July 18th. I am assuming that I will see the PA. Last meeting, she asked his "fill in" if I should go from every 4 months to annual. The response was that he didn't want to change Dr A's schedule as he is still following me closely. I did see Dr A with wife on the second floor as they were one the way to his Oncologist appointment. We talked briefly.

I pray daily that he heals well.

Gourd Dancer

Cmdrdata profile image
Cmdrdata in reply to

My next appt. is for July 11 (my 72nd birthday!).

SsgCulldelight profile image
SsgCulldelight

Welcome, anything YOU share bro is OK, really there'll be some comments that aren't so supportive of your status but so what, don't take them to heart. Aqua therapy is great for sciatica, in conjunction with ya pain killers, and try to get off those asap they will become an issue in the future, find some natural alternatives like green teas or something, they work too. Stay UP my guy.

Jackpine profile image
Jackpine

Welcome DEFCON, First the Mayo is and amazing place that’s where my MO and RO are located. I’ve been on Zytiga for for 18 months along with Lupron every 3 months. Congrats on your PSA with Zytiga. While my PSA has been low it’s on the rise so back to the drawing board.

For the fatigue you need to power through with exercise walking, running a chain saw, anything to get you moving. I know my dog gets me on walks everyday like she knows that’s what I need. Also use some light weights if you are sitting.

Hang in there you’ve got this.

Break60 profile image
Break60

I had bad sciatica due to pinched nerve back in 06 not due to cancer but from moving furniture. Ended up in wheelchair. I had epidural shots which stopped the pain immediately and then did rehab to strengthen back muscles . No problem since then. Of course metastasis is different than pinched nerve but I wonder if radiation to the spot would be helpful?

Bob

larry_dammit profile image
larry_dammit

Welcome to the group 😀. There really are no ground rules. Keep it civil. On Xtandi myself. Every side effect that is listed has come and some have gone. I’m fighting a issue in my neck now that they want to send me for injections tingling in my ear,shoulder and hand. Think it’s a old injury not sure. Have a bone met on my spine. 23 months and counting 😀😀😀

j-o-h-n profile image
j-o-h-n

Hello Defcon1. My only contribution/advice for you is for you to keep smiling.

Here goes: What has 16 balls and sings?

Your response "I don't have a clue".

Answer: A quartet.

Your response "A quartet? Hey that's only 8.

Answer "One's a tenor".

Good Luck and Good Health.

j-o-h-n Wednesday 06/27/2018 7:00 PM EDT

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