Advanced Prostate Cancer
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Xtandi side affects

Hi I was diagnosed with stage 4 prostate cancer August of 16. Cancer in my lymph nodes ,bones and a spot on the back bone, 6 rounds of chemo ,lupron every month , have been on Xtandi now for 13 months. Problems. Bone pain ,weakness,loss of manhood. Wake ever morning with what feels like arthritis in my hands and fingers .doctor has me on morphine for 5he pain works for the most part

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What is your psa?

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Was 3 when diagnosed ,11 when started treatment. Now .005

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Not bad at all. Keep it up.

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Hi dammit. Pleased to meet you. Is this your name, or are you really pissed off?

I don't know what to say. You hurt, I say smoke a joint. I have bone mets for a couple years now, and never had an inkling of pain. But, we are all different.

F

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That was my middle name growing up. 😀😀😀😜 DON’T have much pain except in my rib cage when I get to active

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Figured it was "real". You do have mets at that spot? There are other causes for rib pain, not associated with PCa. Just swinging, tell me if I hit it.

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Yes have Mets in my ribs

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Have you considered radiation to the offending rib(s)?

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Doctor has not offered it, said as long as we can keep the pain manageable that no need

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I had a few mets on my spine and hip. After a year of Xgeva they have apparently minimized, to where they are no longer "recognized".

Apologies for ignoring the X question, but I haven't been on it yet. As Zytiga slowly fails me, Xtandi is just around the corner. The "only" side effects I have are from the ADT, which after eight years are relatively minor.

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I do not understand your Dr.'s approach. Why just palliative pain treatment instead of attacking the beast before it spreads further? Doing both makes much more sense to me, but to quote someone on this blog, "What do I know?".

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I've had a lot of rib pains. Our situation isn't the same because I don't have mets there. They think it's referred pain caused by spinal mets. But what I wanted to share with you, just in case it helps you out, is that my doctor prescribed Voltaren gel, & later a generic version. I just spread some on an area that's hurting, & it soaks through the skin. I've had relief anywhere from instantly to 5-10 minutes later. But it's been good relief. It may take care of things for the day, or I may need to apply more later. If that works for you, it's such a simple, non-invasive treatment. And you only lose a little time & treasure seeing if it works for you. Good luck, Larry!

Neal

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Thank you Neal

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I was in terrible pain with my bone pet. Radiation worked like a charm - all the pain went away. I’d recommend talking to your doctor about it.

Best,

James

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Agree! Talk to good RO! Why suffer?

Bob

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Asked my doctor how many meets I have and he said too many to count. PSA now 2.37. her says he does not expect it to go much lower. Wish I knew what to expect next, and when. Zitiga Lupron seems to have things on hold so I am busy enjoying life, deciding if I should go on disability. He says I have chronic fatigue caused by the cancer and Zitiga.

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I find that I get tired very easy, don’t know if it’s the Xtandi or the Lupron shots but loosing my muscle mass

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Same for me.

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I get tired too.too many to count is a hell of an answer! best of luck to you.

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Hi there, If it helps, I've been on Xtandi for about a year now, also have had radiation, Xgeva for over a year, Provenge Immunotherapy and just finished Xofigo (Radium 223 Dichloride injections) I just turned 62 was diagnosed at 58, DaVinci prostatectomy. PSA now 0.04 mets in sternum, 2 ribs, Illiac bone, and a couple of vertebrae. I'm very active, work out 6 days a week. Definitely have lost muscle mass and most everything that makes you a man! Body hair almost totally gone. But fortunately I haven't experienced any other side effects other than fatigue. Some days I need to nap in the afternoon, other days I can go all day. Oncologist is waiting to see how the Xofigo worked and if necessary we'll do pin point hi dose radiation on any remaining spots in the bones. You have to be your own advocate!!!! Tell your doctor what YOU want to do!!! It's your life and your body.

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Your experience is not uncommon. I have been on Xtandi now for 4 years and I just started the morphine called Embeda. This is the best I have been with my Pain for 18 years.

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You might want to get a second opinion? Try a prostate cancer expert at a cancer center.

You don't mention Xgeva, which you should be on with the Lupron. It helps to protect your bones.

It doesn't sound like your pain is controlled, and if you need morphine to control it, that's pretty heavy duty. My husband has had spot radiation twice, and it made a huge difference in his pain. At least talk to a radiation oncologist and see what he/she thinks. Also consider Xofigo/RA 223. My husband had a lot of diffuse spots and the Xofigo is designed to go to any bone that is cruddy (unscientific term!) and binds there, so it's good for diffuse mets. It seems to have helped him as his bone scans remain pretty good.

Not sure when your chemo ended but the extremity effects can last a while afterwards -- 6 mos to a year.

You might also consider Provenge (if insurance covers it) - you need to get Provenge before you have visceral (organ) involvement.

I'd really recommend getting more info from another doctor. We like and trust the oncologist who cares for my husband but we get a lot out of the research doc we see once or twice a year, and the oncologist appreciates the input from the expert. What the research oncologist does for us is give us a big picture and explain it really thoroughly, and the potential future paths. We see Dr. Eric Small at UCSF but if you look at this site you will find lots of references to other places around the country.

I hope your pain can get under even better control.

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Sorry, current treatment is Xtandi 120 mg.per day, Xgeva and Lupron shots once a month with a full blood panel and PSA . I take a moraine pill morning and night and a dilaudid pill mid day for pain .

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it's hard to keep track of all the stuff one takes and gets shot with!!

To me, that seems like some radical pain, so I'd still recommend at least talking with a radiation oncologist about the +/- of spot treatment.

What we were told consistently was that once you radiate a spot, you can't really go back to that spot, so you do want to make sure it's a significant tumor. And there's a trade off with pain. Yes, the general rule is if it's not bothering you too much, then hold off on the radiation (it does kill marrow cells). The RadOnc can look at your site and tell you how much of a deal this is. Some bones have less marrow production than others. And RadOnc can help you assess the pain/quality of life v. radiation trade off.

My husband only had to have 5 treatments (two different times) and he felt so much better afterwards (and he was only taking oxycodone for pain relief before the treatments).

Also note -- if you get to radiation, if your skin gets a little raw, use Aquaphor (a kind of heavy duty vaseline). It's a good treatment -- was recommended to us by someone who had a lot of radiation.

Good luck with it all, and keep asking questions. As someone else wrote -- it's your body and your life, so you get to ask as many questions as you need!

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Hi I am new here. I am 61. I was diagnosed this past July with stage 4 Prostate cancer. I have 3 bone metasis and 1 lymph nope. I am in my 5th month of treatment and had a follow up and treatment at the end of december. I take 1000 mg of Zytiga every day and 5mg prednisone twice a day. I also have an implant in my belly, forget what it was called and they gave me a shot for my bones, i also take 2 calcium/vitamin b tablets each day. Hate the side effects! I really have not noticed any pain. I am worried about what to expect in the next couple years, what will my quality of life be like? will I be one of the 30% or so they say will make 5 years. I have more hormones that a girls softball team! LOL, but it makes me so emotional sometimes.

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Mike, were you on chemo, ? I did 6 rounds, with the white blood shot the next day. Now on Xtandi oral , and Xgeva and Lupron monthly to heal the bones and keep the PSA down, plus a hot flash pill, losing muscle mass and my body hair ,having arthritis from the Xtandi, but taking glucosetmime for that. Oh. I was diagnosed August of 16. Current PSA is .005.

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Hi Larry, the way I understand it, the Zytiga is a chemodrug, at least thats what it says on the bottle. Other than that no chemo yet.

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