SIDE EFFECTS ON XTANDI

[FGENTILEMD]

I HAVE PROSTATE CANCER WITH BONE METASTASIS I AM NOW CASTRATE RESISTANT MY PSA IS SLOWLY RISING I STARTED XTANDI 10 DAYS AGO TAKING 4 TABLETS DAILY  I HAVE SLIGHT HEADACHES BUT NO OTHER ADVERSE REACTIONS ANYONE ELSE COULD TELL ME THEIR EXPERIENCES ON XTANDI I WILL HAVE ANOTHER PSA IN 2 WEEKS FRANK

[dkovijan]

It takes 6 weeks before Xtandi starts showing results...in our experience. My Dad got worse in those 6 weeks before he started getting better on Xtandi. Most important advice from our experience is to be prepared for the next step once Xtandi stops working...in say 12 to 18 months time. Have the next treatment lined up and available...because during those times cancer tends to progress super quickly.  My Dad was doing well on Xtandi with PSA relatively steady and then, all of a sudden two months later the cancer started spreading radically...once Xtandi stopped working. Good luck and keep faith.

[motosue in reply to dkovijan]

Wow, good to know your experience.   Thanks.  On Xtandi for a few years now, I think. 

[Gecrellin]

Xtandi kept my PSA generally stable for about 5 months (I had already had Zytiga for the better part of a year, so we were uncertain how well Xtandi would work. My next spent was docetaxel chemo. I had no side effects from any of those treatments.

[motosue]

I have no side effects that I can tell. Also taking Zytiga at the same time.

[CERICWIN]

You can look at my profile and read about my own experiences with Xtandi, I've been on it for eighteen months now.

CERICWIN

[RJ-MN]

22 months on enzalutamide and holding ... I am in a clinical trial at the NIH that also gives me an experimental immunotherapy called Prostvac-Tricom injections.  My rising PSA dropped from 13.05 to 2.56 in two weeks, to 1.39 in a month, and then to 0.02 where it has remained.  Significant breast growth (and tenderness for about 6 months), but it has been a Grateful stage!

[motosue in reply to RJ-MN]

Please let us know how you do on this new injection.

[fredkash1 in reply to RJ-MN]

Impressed with your results with the drug you're using. How are you doing now?

[RJ-MN in reply to fredkash1]

I'm now on my 53rd month on this clinical trial although I am nearing the end of it. My PSA began a turnaround in mid 2016 but stayed below 0.1 that year. 2017 saw a slow but steady rise, and now 2018 has seen it increase. Last month's PSA was 15.3 and the scans all show increasing uptakes. But there have been no clear new metastases yet, so I remain on the trial. I believe I am the 2nd-longest-survivor on this NIH trial, so it has been a good run.

[aupauledwards]

Side effects in a word - fatigue.

[bb66hotflash]

My PSA decreased over six months to it's nadir (0.7 to 0.9) and stayed there for a year.  Most side effects I had were from the Lupron-- Hot flashes, fatigue, weight gain, etc.  I have no headaches.  After  21 cycles (28 days/cycle), my PSA started to rise, slowly.  My PSA doubling time is 4.0 months.  After 30 cycles, my PSA is now 0.5.   I have CT and bone scans every 84 days, with no discernible progression.   Be sure you are taking Vitamin D3. (I am taking 2000IU/day).  Also am taking denosumab injections, once every 84 days.    I started with PSA of 17.9, Gleason score of 9 (5+4), 6 of 12 cores positive. Best of Luck to you. Roger

[tomhawk88]

Feeling tired all of the time.  Bone aches, but that may be another issue.

[Dan59]

My advice and it is what I do is to take xtandi just before bed, to escape the side effect of fatigue, I think also if I wake up to early I have a headache too

[KidKotch]

I had some constipation in the beginning but overcame with 2-3 figs at night followed by a couple of Fig Newtons with my coffee in the morning.  The only other side effect is feeling tired and needing a nap during the day unless I get at least 8 hours sleep at night.  No other reactions other than than those.

[KidKotch in reply to KidKotch]

I am also continuing on my Lupron injections and Flomax

[RangerTug]

My stage of diagnosis is similar to yours. I have been on xTandi for 12 months now my Psa dropped from 24 in March 2015 to 0.2 in August 2015. Then started to rise again Feb 2016 it was 6.1 I was diagnosed with PC in July  2010 with a PSA of 254 and Gleason 9.

I am on Zoladex and other than the standard SE from Zoladex I do not notice any difference when I started  xtandi.

[YOUYOURHEALTHBOSS in reply to RangerTug]

Are you still on Xtandi, RangerTug? I saw where someone warned that once this drug stops working that the cancer will begin to spread rapidly through out the body. Very scary!!!! May be somewhat true of Lupron as well. Most docs won't tell patients about such until it actually happens. But one should KNOW b\f starting a drug about all side effects & potential warnings.

[DavidJS]

My best results were when I stopped taking Xtandi. In summary: Diagnosed with PC in 2000 when I was 67. TURPS procedure brought PSA down to negative figures. PSA started rising in 2008-9 but I didn't worry until early 2014 when blood appeared in my urine. PSA was 31 but urologist said he was not concerned until it was over 50. By October it was 61 and a further TURPS was performed. After the procedure I was informed there was no long term outcome. I commenced monthly injections of Firmagon (a GnRH receptor antagonist). Early December PSA was 11 however, by June 2015, I was castrate resistant and commenced monthly Xgeva injections (for bones) and 4xXtandi capsules a day together with calcium supplements. PSA went from 35 to 4.5 in one month and was down to 1.1 in January this year. Good result. For six months I had few side effects...mostly tired, back pain (there are tumours in my back, ribs, shoulders, pelvis and hip) and occasional depression and diminishing appetite. Able to be independent around the house but fairly well housebound due to incontinence and pain). Sidenote here: the best result to back pain for me was daily massages by my wife and hot wheat pillows.

Over Xmas I was so ill my wife thought I would not see the NY. So tired I could not get out of bed, depressed, headaches, rapid weight loss, very frail, incontinence (bowel and urine but this is due to scarring and radiation damage not Xtandi) and pain. We put the deterioration down to the terminal disease. However, on 4 January this year the oncologist suggested I stop taking Xtandi for one month to assess whether it was the cancer or the medication causing the effects. Within days I was improving markedly. I have now been off the Xtandi for 10 weeks. I sleep normally, am not tired during the day, no pain (no massages since Xmas), no depression, appetite returned and I have gained just over 3 kilos. I walk the dog, go to the gym for light physio and have reduced incontinence. When I stopped the Xtandi in January my PSA was 1.1. On 1.2.16 it was 1.3 and on 29.2.16 it had risen to 2.2. I see the oncologist in April. I am very reticent to recommence Xtandi given the improvement in my wellbeing and quality of life. I will wait to see what the oncologist recommends but, at the end of the day, it will be my choice. I will keep you updated. Take care on this journey. Best

[FGENTILEMD in reply to DavidJS]

hi david I am now taking xtandi for 2months my headaches were where due to a new onset of hypertension now that was controlled hydrochlorothiazide I will have my psa in june 7 what did you decide to do I will let you know about my psa in june frank

[YOUYOURHEALTHBOSS in reply to DavidJS]

Good for you, DavidjS!!!!!!! What we take as prescribed meds should ALWAYS be our choice, not the doctors, b\c we are the ones who has to live with the pains, side effects, etc. Patients, are desperate for help, for answers and doctors know this & patients are putting too much trust in the medical field & doctors know this. And so the roller coaster begins...for us. The patients gets better than worse, worse than better, etc. In the meantime, the (practicing) doctors results are all positive..richer & richer & richer as long as the patients keeps coming back for more meds to try & fix the disease or the side effects from another prescribed med.

[DavidJS]

Sorry...forgot to mention that in October 2014 it was Gleason 9, Stage T3. Thanks

[peterworsley]

Xtatndi Worked for me. Much the same as dkovjan below. Went on to Chemo after that. But that is no longer working after seven months, But after 26 years since first diagnosed followed by surgery (before the PSA was routine). I have had a good run. The techniques have changed a lot over the years.

Have been working with UCLA for several years. Also with the Cancer Center at Santa Barbara. Now again have to decide what my future options are. I have explored most of the FDA approved paths.

[BigRich in reply to peterworsley]

Peter,

What options did you select to get the additional 2 years?

Rich

[CERICWIN]

I've been on Xtandi since July 31, 2014.       I had more severe side effects than many others, but I stuck with it, and I'm absolutely convinced that it's extended my life, and slowed the progress of the cancer.      See my profile, it's too long to type here all of my experience on Xtandi

Some guys cannot take Xtandi for two months, but others experience mild side effects.

I had extreme fatigue, nausea, insomnia, and more.      I'm currently on 120 mg Xtandi, Avodart and a monthly Xgeva injection.        My PSA has been going up in small increments, though, for the past year and now is 5.57

CERICWIN

[afab]

I've been on Lupron since 3/2014. I started Xtandi in early 12/2015. My PSA has been undetectable for almost 6 months. The side effects in my case are fatigue and nausea around dinner time. Rigorous exercise and an occasional nap really helps reduce the adverse effects of the drug. Hang in there you're not alone..

Main side effects for me are fatigue and loss of appetite in the evening. A nap and rigorous exercise exercise are helping to minimize the symptoms. In my review the rewards far outweigh the side effects.

[CERICWIN]

I suggest that you look at my profile for my experiences with Xtandi, but bear in mind that we're all different, and I have more side effects than most others. It helped control my cancer's progression for two years, and it was worth suffering the side effects because of this.

CERICWIN

[Jawjim]

Dear Frank,

I'm in a similar situation. 5 years battling . I've had surgery, radiation , chemo, Lupron ( which I could not bear the headaches, as I still work ). As of late Casodex . My number PSA after 10 months or so on Casodex started to rise . Now Xtandi is prescribed. I've not had my first dose yet.

Im searching as to how everyone affords this drug. I'm by no means poor but this is a huge financial hit. I make too much to qualify for any break. Any advice ?

Thank you , Hang in there

Jim

[pcfred in reply to Jawjim]

The drug company will subsidize your portion. The doctor should be able to set it up.

[Rottney]

Frank, sounds like we're about in the same situation. I was showing castrate resistance with PSA doubling every 3 months. Switched from Lupron/Casodex to Lupron/Xtandi about 3 weeks ago. Tried 4 pills right off the bat and had terrible headaches. Doc recommended dropping back to two, then 3, then 4 over a couple week period. I'm up to 3/day in the morning. Based on what I've read here I might switch to taking them in the evening, maybe I'll sleep through the headaches.

[chascri]

I have been on Xtandi for about 15 months now. I take four at bed time with a full glass of water. I have not had headache issues. Have had increased fatigue and decreased appetite. Also have stomach pain,bloating and constipation but I think that’s probably attributable to the fentanyl patches I use for pain. Good luck.

[YOUYOURHEALTHBOSS in reply to chascri]

True, the Fentanyl patches can cause chronic constipation & Xgeva can cause severe loss of appetite. I had to dismiss both drugs. I did not ask or discuss either with my doc. I just told him what & why I refuse to take them any longer. He didn't press the issue. After all, I live in my body & have to deal with the horrific daily side effects, not my doctors! I'm finding out how important it is to READ the paper that comes with meds and go online and read more about the potential side effects of meds b\c docs dont tell it all at all!