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Xtandi side effects, results, etc

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Posted 1/21/2013 11:20 PM (GMT 0)
Thanks Bud
Tony - I not sure. What you call them, i.e. remissions; but he did have 5+ years before any PSA rise after surgery (supposedly totally encapsulated). He was at <.01 - not long enough. That's when he had the radiation. Over 7 years before a worrisome rise and eventually to Lupron; which he's never been off. We have some really long times between rediscovery. Than 2011 the pathological break lead to discovery of mets. Now on this journey - the big war/battle and no more minor skirmishes.
Tednsal - husband 67. I monitor and get copies of all his tests, he does his own medicating. He does take the vitamin C, D, and a multi-vitamin, also Prilosec, 5 mg Prednisone 2x times a day (need to discuss this with Dr.), Benicar, Mobic, And Vytorin. Never Provenge - he didn't qualify by the time he metastasized. The scans were the big awareness for what was happening, but the PSA has been core too. They are close. Be glad to keep in contact.
Posted 1/22/2013 12:12 AM (GMT 0)
Passages...I understand that no steroids needed with Xtandi, that's why doctor is weening husband off. No cholesterol problems, blood pressure med is Lisinopril, never taken Mobic.

TC-LasVegas.....guess no remission was in the cards for us!
Posted 1/22/2013 2:06 AM (GMT 0)
Dr. (New) assumed he had been on Casodex. I never heard of it or mentioned until on here. For about 10 minutes he was going to do that while we figured out what happened to Xtandi prescription - but had been at pharmacy waiting for us for over 2 weeks.
Posted 1/22/2013 11:47 PM (GMT 0)
Just received the lab reports from October 2012 to present. . Do not like the numbers for the PSA. September 2012: 196, 50, October: 23, 29, November: 30, now as of 01/10/13 it is 44. So it is going back up, probably why doctor stopped the taxotere and started husband on oral medication (Xtandi). Although the latest bone scan did show additional spots, this time on the right femur, that could be one reason why the PSA started rising. Just thinking about reality...and not happy with what to expect on down the road.

Husband re-joined the YMCA again, going every day (so far two days) doing a little treadmill and weights, then hot tub. Says the hot tub really has made him feel better. He went to be at 6:45 pm ;ast night, that first day at the YMCA really "did him in".
Posted 1/23/2013 7:39 PM (GMT 0)
When Taxotere started failing for him, Xtandi not available and Zytiga had just been approved. Not sure anymore if matters what order and these last chance type drugs.
Posted 1/28/2013 1:45 AM (GMT 0)
Just looking for updates from everyone. I'm not sure what is what - He seems more fatigued. Still struggling with cough and today the low grade fevers back. No nausea, but I think his appetite is down; but could be infection he's fighting or who knows what. Mainly checking in how everyone is doing.
Posted 1/28/2013 4:28 AM (GMT 0)
Passages...my hubby is kinda "holding his own" right now. His ankles and legs are starting to swell (side effects from Xtandi), so I called the doctor on Friday, talked with the PA, started back on the Lasix (20mg) and the Aldactone (25mg). The swelling doesn't seem to be bothering him as much as it bothers me. He didn't want to do much yesterday (Saturday), we went to church this morning, then he got to his recliner and slept. Already in bed at 8:30. We are seriously thinking about going somewhere for a few weeks in the RV, maybe over to Hilton Head.....I can drive it as well.... but we will have to make sure that the Xtandi can be delivered wherever we are...
Urologist appointment on the 5th and then oncologist on the 7th. 49th anniversary on the 8th.....then we can be off....maybe!
Posted 1/28/2013 10:46 PM (GMT 0)
tednsal

Go someplace in the RV! Yes! Get away!

You two need a break!

Hugs

Bud

We will beat this crap
Posted 1/28/2013 11:10 PM (GMT 0)
Tednsal,

Glad you reported in. We went to my daughter's after church and he was worn out - came home and slept. Saturday he slept all afternoon. Again, don't know if Xtandi se or just body adjusting to it, the cancer, or if it's some kind of ongoing infection.

If you can do it, get away. Sounds like a great idea. I would think you should be able to work out meds. I know, just hard adjusting or even trying to figure what needs to be adjusted to long term. Keep me up. Had been wonder how you were doing.
Posted 1/29/2013 7:40 AM (GMT 0)
Passages...I know about the "sleeping" schedule....mine sleeps a whole lot since the cancer has spread to his bones. The chemo also took away his energy and he dozes on and off most of the time that he is in his recliner. I am glad that he can sleep and doesn't have insomnia...or bouts of sleeplessness. Sleep helps him relax and not have to think about what's coming "next".

I did find out one good thing about our copay on this Xtandi....since we had to pay the $1,000.00 this month, he has met his $1,000.00 "out of pocket" for "specialty drugs". This does not included any of the "other" medications, just Xtandi, we will have copays for those. I also called Walgreen's Specialty Pharmacy and they can deliver anywhere in the continental USA except to a post office box, so if hubby feels like it, and the weather cooperates, we may just "hit the road" for a spell since we can get our Xtandi. Of course, that will be after the February doctor appointments, maybe our house will sell while we are gone.

One of our sons is a sales manager for ophthalmic equipment and he is stopping by for a few days while he is "looking in" on some of his clients/doctors in our area. He makes his dad laugh when he is around and that will be good medicine for the hubby.

One thing that I want to ask you about the side effects that your husband is experiencing on Xtandi......is he having any "swelling" in his ankles, lower legs, arms and hands?

Take care and I expect for you to check in as well....that goes for you too, Raddad and Jitters99. I need your support and feedback for sanity purposes.

P.S. CancerCare is going to have a workshop for men living with metastatic cancer, their families, friends, etc on February 8, 2012 at 1:30-2:30 Eastern Time (http://www.cancercare.org/). You can listen to it by phone and or internet. It's informative and lets you know if you are going in the right direction and possible new treatments on the horizon, need to register, you all might want to check it out!
Posted 1/29/2013 11:16 AM (GMT 0)
Tednsal and Passages, thinking of you all and hoping xtandi does the trick for your husbands. Fatigue is a real SE. It didn't kick in for my husband until a month or so later. He only worked part-time but even that was too much. Fortunately (or unfortunately) his work had to lay him off because they were not doing well. (This place will in all likelyhood contact my husband again if they begin to do well).
For the rest of the time on xtandi and even now off of it, my husband takes an afternoon nap. He's never been a napper!
Off of xtandi now and back on zytiga, we're hoping for more energy and less pain! But it's only been 4 days since he began the zytiga!
I'm glad to see your updates!
Posted 1/29/2013 3:07 PM (GMT 0)
So good to hear from you too nhwife. We did like the se on Zytiga - none or felt like none after Taxotere; of course not on that long. I'm not sure how he would do if he couldn't work. It's his own hours, bit it involves lots of security/passwords, etc. and that's getting harder and harder with his memory. Worries me.

Will have to check on the swelling. He hasn't commented on it. More the fatigue, coughs, and on and off fevers that are bugging him.

Past time to hear from Jitters99. Everyone keep us up. Bud/Raddad should be about time for another round. Good luck.
Posted 1/29/2013 4:37 PM (GMT 0)
Hi Everyone,

Just want to chime in about the SEs on Xtandi. My husband has been on it for almost two months now. He also experienced the terrible fatigue, as well as loss of appetite and nausea. In addition, he suffered two gall bladder attacks (probably related to the big weight loss caused by the inability to eat). He had to cut down dramatically on work and was doing the best he could by taking Ritalin and Zofran. The better news is that these SEs seem to be receding. His energy seems to be returning and he is able to get out of bed in the morning. He is also eating more and using the Zofran less, looking better, and gaining back some weight. It may be that it has taken his body this long to get used to the Xtandi.

Another thing to do is that throughout all this his psa has been climbing, but slowly. He is being treated by Dr. Myers and we had a phone consultation with him at the end of last week. Looking at the results of all the blood tests, Dr. Myers felt that my husband is having a "good response" to Xtandi and said that, with Xtandi, the psa is not necessarily the most accurate marker. So, we will be scheduling a bone scan and hoping that it will show some healing.

It's been a difficult time from last July until about two weeks ago, but maybe things truly are looking up. My hope is that this report of my husband's experience will be helpful and that things too will improve for us all.

Carol
Posted 1/29/2013 7:16 PM (GMT 0)
Jitters/Carol, so good to hear from you also. In many ways reassuring. Mine has not had the nausea, but loss of appetite and fatigue. Told him what you all are saying and was really reassuring to him that some of this may pass. That's our hope and prayers for all on here

I guess on appetite we will have to watch nutritionally that he's getting enough.

Note: I kept saying cortisone instead of prednisone. Not sure where my brain went, but most of you knew what I meant.
Posted 1/30/2013 1:28 AM (GMT 0)
Spoke to soon on nausea - he's downtown volunteering, which we usually try to do together, and got real nauseous, clammy, and dizzy. My son's picking him and than taking me back for car. He sounded very rattled and upset. FYI: if Memphis comes to town it's worth seeing :-).
Posted 1/30/2013 1:34 AM (GMT 0)
Ladies

I updated my Taxotere journey. Bottom line all well so far, had session 2 today.

Ensure and Bounce are two good products to help make sure you are getting what is needed. These two supplement drinks are designed to gain weight.

360 calories in one small container, and they taste pretty good.

Hugs to all and to all hubby's

Bud

We will beat this crap
Posted 1/30/2013 4:14 AM (GMT 0)
Question: I've only noted one of the guys is on Lupron with the Xtandi - what about the rest of you, on Lupron or something similar?
Posted 1/30/2013 6:57 AM (GMT 0)
Gosh, it's so good to hear all of the comments made lately about Xtandi and the SE, it's good to know other people results. I have noticed that hubby isn't as hungry as he usually is, actually leaving food on his plate...that never happens. He still is fatigued and has to "make himself" gt up and "do". I had him vacuum a little today, just a small area of the LR, makes him feel better that he is doing "something" around the house. I am doing all of the yard work...leaves, edging, grass cutting, etc..but it has to get done. So far no nausea, as I said before, I make him a big breakfast with fruit and juice and he takes his pills with that, maybe that is helping him not get nauseous. don't know, have zofran and compazine just in case. He's still experiencing swelling in ankles, lower legs and arms, know this is also a SE, toe nails look a little strange.

Passages, hubby has been on Lupron and then was switched to Trelstar. Did every six months, now every three. Still gets the Xgeva injection monthly (less invasive than Zometa)

Raddad, yes, Ensure and Boost are good, also try Gatorade, the one with the calories and electrolytes. It quenches the thirst and has calories. Dairy products seem to not set very well on husbands stomach, so he hasn't been drinking any of the ensure or boost lately, especially since off taxotere.

Just as a FYI...CancerNetwork.com is another good site....check the NEWS section....
Posted 1/30/2013 3:49 PM (GMT 0)
Just to add another two cents-- my husband is also still on Lupron with the Xtandi. And the news for the day is that he says he is feeling better every day. The side effects continue to fade and so I am thinking that maybe, if Xtandi is going to work, this is how it works-- great fatigue, lack of appetite and nausea till the body begins to get used to it and then a slow, but (I am hoping with all fingers crossed) steady (and may it also be long-lasting) improvement.

As always, my thoughts and hopes continue to be with you all.

Carol
Posted 1/30/2013 4:02 PM (GMT 0)
Anyone else have trouble with irregular temperatures?

Hoping you are right Carol. He is canceling a different volunteer job this afternoon and didn't go to work. Finally saw FP Dr. And she is putting him on antibiotics, inhaler, flonase (?). Have to get ok from oncologist. That will be interesting to see if he gets a response. I would think up and down fever some kind of infection. We did bring up at oncologist 2 weeks ago and just said something cancer could affect how the body's temperature regulates itself. He just was postulating.
Posted 2/24/2013 9:48 PM (GMT 0)
Everybody on thread checking in on how everyone is doing and any others.

My husband's fatigue has escalated - some days much worse than others. PSA has doubled also. No more nausea. He has developed pain in his hip. They may eventually do spot radiation. He's lost 14 lbs. No real appetite, but is trying to eat regularly. He has always been a good eater, which I think the steroids really encouraged; and he too was always a member of the clean plate club.

Jitter99 - hope things are going better. Liefde - hope yours has continued to improve. Tednsal - hope yours has regained his energy. Nhwife - hope the Zytiga working. May do a re-try of Zytiga or Taxotere. Bud been trying to follow your journey on Taxotere and hope it continues to be bearable for you, or at least effective in the long run. Have a brain crank - someone was hoping to do a RV trip - hope that was doable.

You all take care. Have missed your updates - even if nothing has changed.
Posted 2/24/2013 10:04 PM (GMT 0)
Passages, you are good to update and ask about so many of us!
We have our appointment tomorrow. We don't really know what will happen but I want to focus on his pelvic discomfort and pin her down as to what we can do about that. Radiation? What?
It feels like he has gotten into a routine. He is ok until about 3 and then feels the need of a pain killer. He take another around 7 and then he is pretty much ok until about 3 the next day! He would prefer not to take meds.
We know his PSA may go up, or not change much (we would go for that!). We also know we need to give this treatment a good run, longer than 3 months unless the scans indicate otherwise. The next scan is due in April.
I too hope everyone is ok. I miss Bud!
Take care, everyone!
Posted 2/24/2013 10:14 PM (GMT 0)
Our Dr. wants to not give up too quickly on the Xtandi. He feels that might have happened with the Zytiga. The other reason is that he knows we're planning to go to Disney World - his initial reaction Tuesday was "oh no", than said we need to get an electric wheel chair. We had moved it up to March 5th, because he was doing so well and to get there with the girls before things went downhill. We weren't sure what summer would bring. Now not sure how if he'll be able to it now or enjoy. Most of this downhill in the last 30 days.

Nhwife - please update after appointment.
Posted 2/25/2013 4:46 PM (GMT 0)
Our appt. was postponed until next Monday which of course is incredible inconvenient for me but that's what it is. That appt. better not be postponed!
So we are on hold another week.
Posted 2/25/2013 7:10 PM (GMT 0)
Nhwife - that is extremely frustrating. It's especially hard as you wait wit questions, issues, etc.; another week can seem forever. You guys were in my thoughts - guess not hard enough :-).
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