So I've been on Xtandi now for 30 days. My first PSA came down quite nicely......but......I'm still having bedridden pain all over my body. There are times I tell my wife "if I die tonight, I'm sorry, I tried" it feels so bad......can't figure out if this is the Xtandi, the cancer, the rebound from the radiation I just finished a week before starting the Xtandi or just a plain combo of all the above......but I'd really like to know if this is going to be "just the way it is" or if it'll get better???? We've all heard the cliche "if the cancer doesn't get you the treatment will" so I'm just wondering if this is what's going on or if I need to drop my Xtandi dose (taking max dose of 160mg)? Looking to my peers for advise and wisdome. Thanks.
XTANDI Amazing results on lowering PS... - Advanced Prostate...
XTANDI Amazing results on lowering PSA but.........
You did not mention Xofigo or pain relievers. Have you discussed the pain with your doc?
I take hydrocodone for pain, but it doesn't really help sometimes. They have never mentioned Xofigo, can this be taken in conjuction with Xtandi
I haven't used either one, and I'm not sure. Doc will know. I hope you find something useful for the pain!
That is an amazing immediate response, what is your alk phos doing? Is it bone pain You have? as is it looks , I would guess the psa will go lower and you are getting a great response that should last a while. If the xtandi is the problem I Think you could lower the dose, I do not have a case example , but you may find one at Google scholar, I am no Doctor just a patient dx w stage 4 , will be 11 years ago June 5.Have you ever checked to see if you have nueroendicrine PC, I think the blood test are ,Mainly CGA and I think CEA and NSE. I hope you feel better, should be no reason to be in pain, get some relief, and best to you, we are all here for you.
static1.squarespace.com/sta...
Thanks Dan59, I'll research the paper and check on those labs. I've had this pain for a while now, and it's just not getting any better!
I'm so sorry you are having that much pain jashelby 
My husband had to stop Xtandi after about 3 months of on and off of it but not be cause of pain. The Xtandi effects lingered for months in my opinion. Please call your doctor asap for other pain meds. Lg takes all of this for his pain. ....Oxycodone, Fentanyl patch, Celebrex, Cymbalta and Turmeric. Without any one of those he would not be able to walk.
Sounds pretty rough, Jackie. I hope he feels OK as well as being able to walk.
Neal
Thanks Neil he says he feels better than he has in a very long time. I hope you are doing good also 
Hi erjlg, good to hear that Lg is managing his pain well and is still keeping mobile.
Best wishes to you both, Jackie.
Always good wishes for you also. Hoping you are managing and moving forward and enjoying a little bit more each day. Hugs.
Hi Jackie, things have got into a new norm now. I went to Amstetdam on my own for a couple of days in April and whilst it was strange to be alone it was also weird not to have to worry whether Mike could cope without getting too tired. I went out and had a canal trip and visited the Van Gogh museum and went to the Zoo! The really hard thing is coming home but that is getting easier. Not sharing experiences is also strange so in October my daughter is coming to Avignon in southern France, travelling by Eurostar so that will be nice to have company. Lots of gardening to do now its warmer.
Love and hugs to you both, Jackie.xx
I'm glad your trying to adjust Jackie....well having to adjust. It sounds like a nice time the things you are doing. Going home would be difficult. I think doing any of it surely would be. Sending good thoughts, warm wishes, hugs and prayers. Excited for you for your daughter visiting in October We had our 1st sunny day yesterday since 40 days and 40 nights ago lol 
No sunshine was getting to me.
Big ((HUG))
I'm really sensitive to medication and I'm afraid if I was on all that I wouldn't be able to walk. LOL
I am really sensitive to any pain medications or any medications also so I understand that. Hoping they can come up with something to help you not to hurt so bad. Funny but not funny you can't walk with meds and you can't walk without please keep trying to find something to help you. Hugs.
I'm no doctor, but I, too, think I would look to find out if some of your most painful "mets" might contain a variation of prostate cancer that does strongly express PSA nor respond to Androgen Receptor blocking via the Xtandi. As mentioned above, you may have some rare variant, such as neuroendrocrine type, which is remaining active and causing the symptoms? Ask your doctors.
If they may suspect you do not have a more typical prostate cancer type, you might be looking at some referrals for second opinions from some of the experts in the field.
Here is an article by one of them. Note some quite different treatment options.
am.asco.org/daily-news/trea...
Note also from the above, some candidates for possible second opinions/consultations:
Small EJ, Sweeney CJ, Aparicio AM, Beltran H, Aggarwal R
(As for my own case, I was not in pain at all when I started Xtandi 6 months ago, despite numerous bone "mets" throughout pelvis and spine. My PSA on Xtandi has dropped from 94.8 to 3.4, so far. My fatigue level is maybe 50% above what it was before, on Lupron alone. My prior treatment was also very responsive to ADT. Initial PSA with lots and lots of bone mets and lymph nodes and lower back pain 3 1/2 years ago was 5,006, with a nadir of 1.0, before resistance during year three took it back up to around 95 again.)
Good ideas, Charles.
Have you found anything useful to counteract fatigue? Thanks.
Neal
My onc reccommended pro vigil for boosting energy, really works for me. I only use it 1/2 strength (100 mg) when I have busy days. Effects mood and makes you "feel" like doing things even though your strength isn't actually increased. It increases dopamine. If I take it several days in a row I feel almost normal. Can interfere with sleep at first and when stopped can have a hangover effect. It is not cheap but my doc wrote a small trial prescription.
Billash
Neal, believe it or not, BIRM appears to have lifted my brain fog, and reduced my fatigue level. I started it on 5/1, so nothings written in stone yet, but I don't think it's a placebo effect, as of yet.
Joe
In a bit of a paradox, I feel better when I do just get outside and walk, despite the lower peak energy levels or energy reserves of background fatigue. It does not take a huge distance, or a hard pace, .... just doing it every day, and being outside in nature instead of so wrapped up inside my head seems to help. I'm sure that it helps with bone strength and balance, too. I choose to mow my own lawns, too, but I now have to do it more slowly, of course, and take 10-15 minute breaks as needed, particularly when it's hot, and I'm hot flashing on top of everything else. Ha. Ha.
Charles
I've been told that I have a "different" kind of cancer that is similar to small cell and that a PSA of 1 is like others 100, so my PSA stays low. I see a different Oncologist next week, my first one was foreign and I never understood half of what he said (language barrier) hoping to get more understandable explainations soon.
I would get a second opinion, but yes small cell is what we talked about nueroendicrine cancer, there are also different treatments for that, and the same. Did they verify with a CGA, CEA, Or NSE test, or just a wild guess, like out MOs do sometimes. I would have the test. Have a great day. I am doing a Happy Dance today, just found out psa dropped from 86 to 73 between fourth and fifth chemo By the way Dan J on that list of long time survivors on the link I shared was Me 5.5 years ago.\
Have a great day,
Dan
That's awesome Dan59!!! I'm assuming these tests were done when they did my biopsy of the brain at diagnosis, but I'll check. I've never had a prostate bx, which I found kind of stange, so never got a gleason score. I'm really looking forward to seeing this new Dr. Will keep everyone posted. Keep dancing!!
ctarlteon cited: am.asco.org/daily-news/trea...
That article really shows what a professor/doctor working at a research hospital can do as compared to a run of the mill oncologist who hasn't opened a textbook in 30 years and is just now trying to get his head around ADT + chemo as a combination therapy.
Alanm
Do you feel like you have a good med onc, & are you in a good position to communicate, J.A.? If I were experiencing what you are, I would email my med onc & ask for his thoughts about about the pain I was suffering, & what I might do. He'd discuss my situation, give me helpful info & probably a prescription, & let me know whether he wants me to make an appointment (in-person or telephone). Or he might call. If you don't respect your med onc &/or communications are poor, or you have a doctor who isn't compassionate about treating side effects, change doctors if you can. I hope you'll be feeling better soon.
Neal
JAshelby,
I would suggest prednisone for bone met pain relief. 10mg prednisone per day along with Advil was by far a better pain reliever for me than hydrocodone or oxicodone.
The effectiveness and side effects of radiation peak a month after your last treatment, and it can take another 2-3 months for your body and then your mind to calm down and clear up.
Your radiation leaves a lot of dead cancer and tissue in your body that cause much inflamation in your body and that needs to be expelled. Enzymes like Wobenzyme, nattokinase, and serrapeptase help reduce the inflamation and break it up so it is expelled easier. These enzymes do not interfere with cancer meds like Xtandi.
And then you are also dealing with the first month of Xtandi which often makes people sick with flu like symptoms. I am sorry you are having to deal with the overlapping negative effects of radiation and Xtandi. It will get better in the next few months.
You may also want to try a few energy boosting supplements like CoQ10, alpha lypoic acid, and American ginseng.
And the supplements B12 (1000mcg/day) and vitamin C (1000mg/day) and vitamin D3 (5000-10000iu/day) also help strengthen you. All supplements are easily purchased online through Vitacost (my favorite), Amazon, or others.
When your strength comes back, please consider some professional physical therapy to get your body moving again. Most oncologist will write an Rx for this, and Medicare or insurance will pay. You can start when even walking is a chore.
You are going through the hardest time right now. Please stay strong. There are several much better years ahead for you even with stage IV mCRPC. I am enjoying my 6th. Life gets much better.
Bob
The Xtandi has totally exhausted me but it's helping to keep my PSA down. Medical oncologist asked if I wanted to lower dose and I told him that its working for now and why mess with it. Oxycodone and exercise have helped with the exhaustion and pain.
I had amazing results, for 32 months on Xtandi. Kept my PSA around 0.7 for two years. Unfortunately my PCA has mutated to a different aggresive form. PSA has doubled every month for past 10 months. (Now 42). Tried Biopsy to identify tumor DNA modifications, Provenge, Clinical trial w/ AZD8186, substantial Liver metastases growth, Zytiga, 20 fractions of radiation to Spine for Pain due to bone mets/spinal compression (and nerve canal compression). Now 1st round of Chemo- Docetaxol with Cisplatin.
Finally went off Xtandi, due to overwhelming fatigue/exhaustion, last July. A 5 year survivor for now, but don't expect to make 6 years. As you can see, I have been thru a lot of efforts in the last ten months, to find another successful approach, with out much luck. Best of wishes and Luck in your fight for this devasting disease!
I'm really sorry for everything you're going through.....I can relate. I was diagnosed in 2015 and my PCP gave me 3 months "get your things in order". I'm still here......but I still wonder how I'll see the next season/holiday. We gotta keep up the spirits which in turn helps us keep up the fight and bind together here or where ever we find comfort to go through this journey with our dignity and spirits intact!! Hang in there......praying for you and all my other brothers.
I am going through Provenge treatment now but it sounds like I will soon be starting Xtandi following my last treatment in late July. I am very concerned about the high cost of Xtandi, even with my drug insurance through Humana it will cost $2940 per month as my copay. I found out I do not qualify for free Xtandi, I'm about $8000 above the 300% Federal poverty level it takes to qualfy. And, I am told there are not any Foundation grants available to help defray costs. Does anyone know of other grants available or do I start selling things? It is good to hear success stories, keep positive.
I was fortunate, I was in a clinical trial and drug was supplied as part of the trial.
You might still qualify for some help with the copays, even if you don't get it for free. See:
xtandihcp.com/support-finan...
Charles
Marijuana if you have access may be a big help. Dr. Abrams at UCSF is one of the best on the subject of Marijuana and pain. The "Pennywise" strain, 50/50 mix of THC and CBD, works well for me in many ways, pain, sleep, anxiety, etc.
ucsf.edu/news/2011/12/11077...
I've heard that the "Harlequin" strain is likewise good for pain. I am lucky not to be dealing with pain at this early point on my journey.
Harlequin is often used for pain, and there are other strains. A good book on the subject ...
"an in-depth and highly readable summary of the potential health benefits of marijuana and how it works in the body, Dr. Abrams and I recommend the book, Marijuana Gateway to Health: How Cannabis Protects Us from Cancer and Alzheimer’s Disease, by journalist Clint Werner."
Andrew Weil, M.D.
I get good cancer pain relief from 2 mg Hydromorphone every 6 hours plus 220 mg naproxen sodium morning and night.
I am on Xofigo (4 of 6) projected infusions. As you note this is for bone pain via radium 223. So far, it has not reduced my bone pain - as a matter of fact, I took 2 weeks off from one of the 4 week infusion schedule to complete 5 days of targeted radiation as my hip/leg pain was unbearable.
I have not experienced bad/negative side affects although tiredness and upset stomach were part of the impacts.
Now that the targeted radiation is complete, I am uncertain if I'll complete the remaining 2 treatments.
Of note, I saw a phase 2 trial that is testing Xofigo in conjunction with Xtandi so you may want to explore that since both are approved but this measures their effectiveness in tandem.
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