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Posted 7/19/2013 11:35 PM (GMT 0)
Xtandi was started close to 4-weeks ago ... 4 x 40mg capsules daily!

Nearly no SE's the first two weeks, however ... now:

1) Tired most of the time (of course the Lupron doesn't help)

2) Currently needing one long or two short naps daily + 8hrs sleep

3) Occassional dull ache in lower center back

4) Multiple (many) daily hotflashes - although not extreme

5) Always wake up with a wet pillow (thru the night hotflashes)

6) Occassional sharp pains in muscles of:

    a) front of right shoulder

    b) front of left shoulder

    c) between left thumb and forefinger

7) Slight irregularity of the bowel

8) Dull pelvic ache ... but this is related to the cancer spread

So far ... surprisingly ... no affect on the apatite.

Will be seeing the nurse practioner on Monday, as well as, my first PSA blood draw since two weeks before starting the Xtandi. Since my PSA had doubled in about 6-weeks (after the taxotere treatments) ... I am concerned about the PSA.

Anyone had the sharp muscle pains? They're infrequent, but when they come, they're strong and sharp - but very brief!

Any other SE's with xtandi?

Thanks ......

Posted 7/20/2013 1:11 AM (GMT 0)
My husband has been on Xtandi since last November. He has done very well on it. Was on Zytiga for a short amount of time after 6 Taxotere treatments last year. His liver #s went sky high, thus the Zytiga was short lived. His main side effects at this time are muscle and bone pain, much like arthritis. When we saw the oncologist on Tuesday of this week, the doctor said he thought it was more likely arthritis than the Xtandi, but hard to believe he could have developed such arthritis pain in such a short time. He has had pain in his upper back, left side, since February and also suffers from blurry vision now. He has started to need more sleep, but hasn't had any appetite issues. His PSA was down to .15 for his June test. The highest it has ever been was 9 at the time of his surgery.
Hope this helps.
Posted 7/20/2013 1:59 PM (GMT 0)
   Thank you for some signs of encouragement. I don't know why my "signature" was not shown here, but I too have been on Zytiga and Taxotere.

   I was on Zytiga for 5+ months, and it did affect my apatite tremendously - otherwise no adverse SE's, but my PSA continued to climb. Then, I went onto Taxotere - 11 sessions - and the PSA did come down from 54+ to 12+. The SE's were mostly bowel related and getting tired fairly easily.

   After Taxotere, the Onco thought it best that I stay off of chemo for a couple of months - but since the PSA then doubled in 6-weeks, I started the Xtandi shortly thereafter.

   It sounds great for your husbands PSA to come down that far ... hope it stays down there. And, if the muscle/bone pain is minimal - that seems like a good trade-off for the olw PSA scores.

Thanks again ... and wishing you continuing success.

Posted 7/28/2013 5:48 AM (GMT 0)
Gizzy'n me....husband has been on Xtandi since January 2013...has had same pain in the shoulder region (both sides) these last few months....took one Aleve at night so he could sleep through the night (he is a side sleeper and the pain in the shoulder areas kept him from sleeping through the night). However, on our last visit to the doctor, he said that the Aleve is rough on the kidneys and stomach and wanted him to take an additional Lortab at night. Hhusband has lesions on the lungs and kidneys, these are being watched by CT scans.
PSA's:07/26/2012: 196.61; 09/06/2012: 50.87; 09/27/2012: 34.72; 10/18/2012: 23.96; 11/08/2012: 29.68;
11/15/2012: 30.38; 01/10/2013: 44.30; 02/07/2013: 13.20; 04/04/2013: 12.71; 05/30/2013: 13.41;
07/25/2013: 21.49
Eight sessions of taxotere from July till December 2012..as U can see PSA results were decreasing...prior to that from December 2011 to January 2012 had three series of Provenge, PSA numbers didn't reflect any change. Xtandi kept the numbers down for awhile but this latest PSA is almost doubled...and that was what the oncologist said would be of a concern. Doctor said that he might use a combination of drugs next.
We are in the 13th year and realize we are in the "short rows" now, but he is very depressed with living/existing in this constant turmoil state...ups and down's.
Regarding sharp pains...husband has these every time he makes sudden movements, such as sitting down, getting up and laying down.
Didn't see your signature as to how long you have been on this journey...I just updated hubby's.....
Posted 7/28/2013 2:25 PM (GMT 0)
To smo1 & tednsal:

   Thanks for your replies. Since I started this thread, I did have a positive meeting with my Oncology Practitioner Nurse last Monday ... and then a negative response with my PSA reading after the blood draw two days later. It was up to a 55.5!

   It's a little misleading though - because the prior PSA test was close to 4-weeks before the start of the Xtandi. And my PSA was spiking since stopping the Taxotere in early April. It went from 12+ to just over 23 in a matter of 6-weeks ... or doubling in less than two months. So, it can be estimated that my PSA was up to around 50 or greater by the time I started the Xtandi ... and I just found out last Monday, that I should not be taking the prednisone while being on Xtandi. At least, that's the philosophy of this Onco's office.

   Thanks to HW ... and reading the posts and replies, I put together a large question list for last Mondays meeting/appointment/blood draw. So, as of last Monday, I stopped the small 5mg prednisone tablets and stopped the multi-vitamins I've been taking for years. Essentially, I was told that the multi-vitamins have been feeding the cancer!!!! It was emphasized though, that I should keep taking the Calcium (1200mg) with Vitamin D3 (1000mg) capsules because of the Xgeva shots and the former prednisone - not to mention the slight growth of the cancer into the bone structure.

   I hope I might have been of some help regarding the multi-vitamins and Calcium/D3 ... but, as I think you said, we're all a little different and reactions and requirements can vary by this long-term disease.

   I wish both of your husbands the very best. Maybe ... a break-thru med is right around the corner. My Onco's office has had a good history with Xtandi the brief time it's been around. That is ... PSA levels have routinely dropped - but, side effects do seem to be a major problem withthis oral chemo.

   The Practitioner Nurse stated that when the SE's get close to being intolerable, then they will reduce the dosage from the 160mg to 120mg (3 pills instead of 4) daily. It usually has reduced the SE's quite a bit, and as long as the PSA will hold steady - in their opinion, it's worth the trade-off. Maybe, tednsal, it would be worth running that past your husbands Onco!

   As nearly devastating as it was to hear my last PSA actually went up - and in fact, more than doubled ... my Onco wants me to continue the Xtandi for at least another 4-weeks ... with another blood draw/PSA test scheduled for about 3-weeks from now. Only then, will I get a more accurate reading of what the Xtandi is doign for my cancer growth.

   I've only been on HW for about 5-weeks, and filled in the signature recently on my profile ... so I'll add it here. My age, not included on the signature, is 70 .... and I do have severe kidney blockage from the cancer growth and COPD - neither of which were listed in the signature.

   The ladies of HW Prostate Cancer are just incredible ... thanks so much for your caring.   

  

Posted 7/28/2013 7:22 PM (GMT 0)
Can anyone share whether Xtandi works better with real low PSA or ? My fathers is at 8-doubled in three months and Dr is thinking about Xtandi. He has had everything else, HT (still taking), chemo, zytiga, and the provenge. Seems Xtandi is it but SE are causing all of us to question the value it if effect is short.

Any thoughts?
Posted 7/28/2013 8:54 PM (GMT 0)
Re PSA and xtandi. Husband's PSA responded very well first few months dropping from almost 1000 to 18. Its been rising, now88, but scans show bladder and lung mets clear, and much smaller lymph. Some increase in bones that may cause PSA rise. Gets monthly shot of xgeva for bones, vit d and calcium daily. We are trying to concentrate on how he feels not the PSA number. He takes naps and little energy but other side effects from bone mets.
He had really bad night sweats unntil the xtandi controlled the bladder mets.

Gizzy n me. You mention kidney block. Just want to share that my husband's urologist did surgery on bladder and scraped as much cancer as possible. Then had the interventional radiologist put in a stent from the better kidney to give as much function as possible. Stent had to come out after 8 weeks from infection. After taxotere, provenge and now xtandi his kidney function very well. Do you see a urologist about the bladder or kidney problem?

Hope this info help because its hard to write about bringing back some really dark months spring 2012.
Posted 7/29/2013 3:11 PM (GMT 0)
To Dreamer44:

   That is one huge drop in PSA - even if just temporary to stay there. Let's hope it stabilizes at the 88 or somewhere near that.

   It looks like I have been on the same meds (except for the Provenge). I still am on the Xgeva and a major emphasis was given to me to stay on the calcium and D3 while stopping the Prednisone.

   My Oncologist is the one who stated that the kidney failure symptoms that started in 2011/2012 were caused by the spread of the cancer cells. My Urologist agreed ... and in early 2012, nefrostomy tubes were placed on both kidneys for several months. Shortly after they were removed, I began to feel very woozy - and essentially checked myself back into the hospital. My creatine level rose into the neighborhood of 14 - so that was treated along with a nefrostomy tube back in for the right side ... and a renal stent was placed in the left side.

   The combination has worked pretty well for the past 13-months now ... and, I assumme it's typical that both the stent and the nefrostomy tube is replaced every 4-month ideally by a radiologist. The nefrostomy tube does have a weekly maintenance of having the dressing changed - in my case - at the local hospital ambulatory department. And the urine bag and tube (external) I replace myself every 6 to 8-weeks. It's a simple job. The nefrostomy tube replacement is simple with no anesthesia required - so it's an in and out quickly - and I can even drive to the hospital for it.

   The stent replacement however, is (as I would believe you are aware of) a more complicated thing - no maintenance - but, it is relatively minor surgery with an anesthetic, some hospital recovery time and the need for someone to be with you for 24-hours. In my case, that's difficult since I live alone.

   I will be seeing my Urologist late next week for my 6-month Lupron shot and brief consultation. I'll ask him more specifically if something can be done so that the stent and the nefrostomy tube can some day be taken out. As I think you're aware ... the renal stent is a traumatic experience to go thru.

   Your thoughts about "concentrating on how he feels rather than PSA numbers" seems to make sense. I hope I can move my own reaction in that direction ... thanks again!!!!

Posted 7/29/2013 3:36 PM (GMT 0)
PreacherMan12

Have not read anything to indicate Xtandi works better with lower psa. Provenge studies do indicate a better result with psa lower than 20. My doc just started me on Xtandi 7/24 with a psa of 8. I too had just finished with provenge and he wanted to use this in sequence. At this time I am having no additional SE's and I hope for the best. When I read the posts about the more troublesome SE's from fellow members it does worry me, however, I try to tell myself that we here at HW are just a small % of guys out there fighting and taking these drugs. How many are out there taking Xtandi with few issues?

Posted 7/29/2013 9:46 PM (GMT 0)
My oncologist is Charles Myers. He has me on an Xtandi regiment for the last month. My PSA is not an accurate indicator of the progression or volume of my disease. He did stress however that any rise in PSA while on this drug would be irrelevant. He said that in a multitude of cases the PSA is rising as the lesions are shrinking while on Xtandi. If anyone is using Xtandi I would suggest discussing this subject with your oncologist. Other markers may prove to be more accurate in measuring the progression of your PCa.

Jim
Posted 7/30/2013 3:03 PM (GMT 0)
To Oncas .......

Interesting ... what are the other markers? I will be having a blood draw the end of next week - talking to my Onco the next day - and a meet with my Onco Practitioner Nurse the following week.

Thanks!

Posted 7/31/2013 2:43 PM (GMT 0)
Hello all:

   My side effects - 10 to 12-days later or after the start of this thread have changed. Now, after my 5th week of Xtandi, they are in order of severity:

1) Being incredibly tired ... any activity just wipes me out.

2) The pain in my shoulder muscles now is nearly constant but very dull.

3) Pelvic discomfort but mild.

4) Irregular bowel movements.

   The other former SE's are nearly gone now ... the hot flashes ... and the sharp muscle pains are very minimal.

   Any suggestions for improving "being so tired"?

  

Posted 7/31/2013 9:57 PM (GMT 0)
Giz,

In my case bone involvement is already present so I can utilize progress or regression by tests such as bone specific alkaline phosphatase or n-telopeptide to measure what's happening with the existing lesions. If you don't have evidence of bone involvement there are other blood serum markers that can monitor activity with some some degree of accuracy. I'm just sayin' that PSA is not the best way to guage the effectiveness of Xtandi. Get your onc's advice on this.

Jim
Posted 7/31/2013 10:23 PM (GMT 0)
I just had to jump in here.... when I see the thread title from some reason it reminds me of an old Outer Limits episode, "The Zanti Misfits".

Sorry.... my brain does that....
Posted 7/31/2013 10:34 PM (GMT 0)
To Oncas ......

   Catscans have shown that there is some bone involvement - although the last three catscans (mostly during the timeframe of Taxotere treatments) have shown no increase of area affected.

   I will check with my Onco - thanks Jim.

Posted 8/1/2013 4:00 AM (GMT 0)
Pepsiguy,
Please keep us posted how you are doing. We are in a holding pattern with Xtandi on the runway. Really curious about its progression effectiveness, and side effects.
Posted 8/2/2013 5:14 AM (GMT 0)
Grizz,

Have you tried deep tissue massage? I have to have one at least once a month to alleviate pain and it provides great relief. If you have never had one, tell the therapist so they don't good deep and will give you a therapeutic massage and it will provide much needed relief from your pain.

Good luck and best wishes.
Posted 8/17/2013 3:01 PM (GMT 0)
From Gizzy 'n me ..............

   It's now been just under 8-weeks on Xtandi, and I got the dreaded return call from my Onco's office late yesterday - for my Thursday blood draw results.

   The CBC panel was good, but the PSA was the tension creator! Sure enough, it's still rising. So in the last 4-weeks, the PSA went from 55.5 up to 66.6 ......... ! Prior to the 55.5 reading, it had been at about 23 and that was 8-weeks or so before - or 4-weeks before starting the Xtandi.

   So ...... game plan ..... see the Onco Practitioner Nurse on Monday, have both a catscan and full-body bone scan by late next week ... and the following week sit down with the Onco for ...... what's next???

Footnote ..... my understanding is that my Onco's office has had very good luck with the PSA dropping while on Xtandi ... even more discouraging cause I was expecting good news. Once again, there is no universal reaction or outcome of most any cancer medication. 

Posted 8/19/2013 5:24 PM (GMT 0)
Gizzy 'n me my hubby just stopped xtandi when his psa reached 150. Now 2 days on zytiga with no new side effects. I reread your feedback from Jul 29 since I've been out of touch for a while. Mark was to start provenge Mar 2012 but his cancer in bladder caused poor kidney function. That postponed pronenge until Sept. We are lucky that the bladder surgery, nephrostomy tubes and stents for just a few months improved his kidney function. I know how the process is and replacements every 3 or 4 months is not easy. Its surgery evan if outpatient. With everything your body is fighting the replacements make it more exhausting. I'm here with Mark 24/7 and can't imagine how hard the last year would have been if he lived by himself. Hope you have family and friends close by to help when needed. Even for your doc appointments, it's comforting to have someone to share the news--good or not!
I hope your Scans are as good as Mark becuase it told a better story than the PSA. His brain scan last week that confirmed a stroke also showed stable tumors in the upper spine. His oncol switched him to zytiga because his PSA doubled in less than a month. We hope the zytiga change fools the cancer again.
We were very disappointed when the provenge treatments did nothing based on scans and PSA. There are other IV chemos available if your oncol recommends. Mark has lost so much weight that those drugs are not an option now. Keeping you in my thoughts and prayers while you wait for the scans, results, and next steps. We have found the waiting to be the hardest time.
Pat
Posted 8/19/2013 7:34 PM (GMT 0)
Hi gizzy n me,
Sorry to hear your news. My dad will do his PSA this week and we will know more. He has not had good luck with taxotere, zytiga so far...I don't know the story with Xtandi yet. But his PSA is in thousands unlike yours. I too m dreaded to think what's next? Please keep us updated....
Posted 8/19/2013 10:56 PM (GMT 0)
To Dreamer44:

   I just spent this morning with the Practitioner Nurse of my Oncologist. He's on vacation but will be seeing me next week. She's extremely competant and told me that the two of them had discussed my test results when they came in last Friday. She was a little concerned that I had lost 9 pounds in the past 4-weeks - and then asked if I had any questions.

   First, some of the Xtandi side effects have been reduced the past two weeks, but some of that is due to the extended time I was on prednisone being stopped just over two weeks ago per their order. So the energy is better the past two weeks - although still need a couple of naps a day. But muscle aches are gone and very little diareaha since being on Xtandi.

   I did ask her about Provenge ... and they had discussed it last Friday - however, I do have serious kidney issues ... and I was told the best candidate for Provenge would be for a person with PSA going up but with little or no metastisized areas. My PCa had/has metastasized slightly into the bone structucture and even more into other areas.

   My left kidney is very weak - and has a stent ... while my right kidney is stronger but the cancer had wrapped around enough of the urinary system so that a stent would not work - so it does have the nefrostomy tube. These do not make for good candidacy for Provenge.

   There is another chemo they are considering, but since chemo is so nasty to the body, they want to see the results of the catscan and bonescan tests first. And they are more concerned with the movement of the cancer than the PSA reading.

   Hope the Zytiga works for Mark. And your right ... when I called last Friday at 3pm for the results - and was told everyone was with a patient but I'll get a call as soon as they can ........ ALL I could say to myself was PLEASE don't let me wait until Monday.

   Thanks Pat ..... best wishes to Mark.

To chinki:

   It's been quite a while since I've seen anything on your Dad. If he started the Xtandi, I wish him the very best. The biggest thing that devastated me last Friday was that my Onoc's office has had very good luck with Xtandi in bringing down the PSA. So I had very high hopes not only for the PSA to come down, but for the kidney stent on my left side to possibly be removed in time. That kind of got trashed!!!

   Also thanks chinky ... and best wishes to your Dad. 

 

Posted 8/29/2013 3:39 PM (GMT 0)
Update .................

   I received the results of last weeks catscan and bonescan yesterday while meeting with my Oncologist. Both showed some movement or growth in the cancer cells - although not alarming growth. The week before, I was instructed to stop taking the Xtandi.

   Unfortunately, the Xtandi did not work for me. During the two months of taking it, the side effects were minimal. My PSA increased to 66.5 and that was the reason for getting the scans.

   It was particularily devastating ....... because a few weeks earlier (before the latest blood draw) I was told that the Xtandi was working for so many in my Onco's office. So ........ bear in mind ......... this PCa beast is totally unpredictable. Talking to others for their experiences is still a good helpful thing to do - I believe .... but there are NO assurances.

   My next step may be Provenge ...... my Onco suggests it ..... I'm thinking about it.

   For all those either on Xtandi or about to go on it ......... I sincerely wish you the best. It does work for many.

Sincerely ....... Rob

 

Posted 1/8/2014 1:59 PM (GMT 0)
I started Xtandi a couple of days ago. My PSA rose to 377 after the chemo therapy failed. I stopped the chemo mid-December 2013. Too soon to tell how well the Xtandi will work. The capsules are easier to swallow than the big Zytiga pills, which stopped working after a couple of weeks last July.
Posted 1/8/2014 3:27 PM (GMT 0)
Hello NMcD:

   It looks, by your signature, that you might have been off chemo for about 12-months before starting Xtandi. And, of course, it appears that the PSA climbed during those 12-months.

   First, I am wishing you well on the Xtandi. As I had stated earlier in this thread, I was only one it for just over two months. And while Xtandi did work for many or even most - in my oncology groups office, it did not work for me.

   Again - I hope that is not your experience.

   I notice it was August since my last post on this thread - and much has happened since regarding the next chemotherapy. I did, based on the recommendation of my oncology office, get a second opinion on Provenge.

   My oncologists office did not have extensive background in Provenge, so I did go to an office that nearly specilizes in Provenge. I did bring my August catscan and bonescan with me ..... and the opinion was that I may very well benefit more from a new chemo rather than going thru the 4-week Provenge treatments.

   I did make the decision to proceed with the newer chemo - called Jevtana. I mention the above only if the Xtandi does not perform up to expectations, so that you'll be aware of at least two additional types of treatments available.

   I know I have seen threads on Provenge here - if that becomes a future treatment. And if Jevtana becomes a future treeatment, I did start a thread called "My Journey with Jevtana" on this forum. It was started in September, and I update it at least every few weeks in detail - for side effects, blood tests, PSA and subjective comments. There is little information available on Jevtana - so this may be of help for those considering it in the future.

   However ....... hope the Xtandi works for you.

Peace and wellness

Rob & Gizmo

   

Posted 1/9/2014 12:22 AM (GMT 0)
NMcD
Welcome to HW, one of the best resources for info on PC. My husband started Xtandi when his PSA was very high (see signature) and it reduced significantly and stayed down for a few months. It gradually climbed and now at 880. It seems from reading the threads that some PC put out high PSA and others not, even with GL 8 and 9's. Hope you have some reduction on the PSA and any symptom s you may have. Other than energy loss, sleeping a lot, loss of appetite, his SE's were minimal. In the past 6 weeks, he has developed enlarged axillary and groin lymph nodes which his oncol believes are a new site for his PC. He has stopped the Xtandi due to the progression of the PC. We are pleased with his response to Xtandi, believing that it gave him an extra year with relatively good QOL.
Pat
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