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Xtandi updates - second opinion lined up but the first opinion today

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Posted 11/21/2012 1:18 AM (GMT 0)
GREAT!!!

Really really looking forward to what you learn!

Happy Thanksgiving to you my dear friend and to nhhubby

Hugs!

Bud

We will beat this crap
Posted 11/21/2012 1:59 AM (GMT 0)
Nhwife,

It is certainly always nice to have things move faster than expected. Good luck and have a good Thanksgiving.
Posted 11/21/2012 3:53 AM (GMT 0)
Nhwife,
So glad you are going for a second opinion. I hope you have much success with him.

Have a wonderful Thanksgiving with all the trimmings and blessings.  

Zimac
Posted 11/24/2012 2:06 AM (GMT 0)
Hubby has been on Xtandi for almost 3 weeks. His back pain and down his legs is so bad he can barely walk. Having to double and triple pain meds so he can move. We don't see Dr until Dec 5th, and seeing him sooner is really a moot point, I'm sure it's to early to tell if med is working and we already know how bad his mets is in his spine, pelvis and legs. just complaining I guess, we had so prayed his 2 back surgeries had work, and they probably have, and now he is just dealing with cancer pain!! Just sucks. We have to fly back to Vegas this Friday, the plane ride is going to be most difficult.
Posted 11/24/2012 2:10 AM (GMT 0)
So sorry Jitters, hopefully trip will be less painful than you expect and not bone mets causing pain.
Posted 11/24/2012 2:22 AM (GMT 0)
Jitters99,

Did they ever mention radiating the spine to relieve the pain? When my husband was having back pain (he has L4 involvement) they suggested radiation to that area.

I understand how difficult this situation can be especially seeing your husband in such awful pain. If he is taking Oxycodone make sure he is on a good bowel regimen to prevent constipation. Cancer pain does suck in a big way.

You can complain anytime you want, you are entitled. This is not an easy road.

I hope your trip to Vegas will be much easier then you anticipate.

Blessings and prayers to you and your hubby.

Zimac
Posted 11/26/2012 9:35 PM (GMT 0)
Update:

We just got back from seeing our current oncologist. The plan is to stay on the xtandi through December, followed by PSA and CTScan in early January and a visit with him after those regarding the results.

The alternative is to go off of the xtandi and either go on the chemo (jevtana, I think) or go back down to Dana Farber in Boston to see if there are any trials. Did he know of any? No, he doesn't keep up on all of that.

As he put it, he is running out of ammunition for my husband.
Really?

Good thing we have the second opinion lined up for this Friday. I hope we aren't pinning too many hopes on this but we are very positive about this.

And very negative about current onc. He really had no further ideas. Is this something which is common? Is it really too much to expect him to be on top of the research? Is this normal behavior?
I hope not.

After a little pang of discouragement - the way the onc was talking, my husband almost felt like death was imminent. But he is ok now. A friend researched the onc we are going to see on Friday and he is the top doc.

So for now we are staying with this. If the second opinion agrees with this plan, we will for sure stay with this. If not, if there are options to investigate, we'll move over to the new onc in a heartbeat.

Sometimes it is hard to believe we'll beat this crap.
Posted 11/26/2012 10:14 PM (GMT 0)
Hi nhwife

I read your posts with such admiration for you both. I feel this is my future with my Dad, like this is your present with your husband. I wish you all the best with your search for new and better treatments for this evil disease. It is people like you that give people like me the strength to get my Dad through our current situation, and reading your signature helps me to realise that there is hope and not to hit meltdown every time I think of it

Many,many thanks to you for helping newbies like us x

Shar x
Posted 11/27/2012 2:44 AM (GMT 0)
nhwife,

I'm so sorry you are having such a difficult time right now. Running out of ammunition for your husband is a terrible thing to say. I believe my husband has more significant disease then your husband and our Onc. has never said that he is running out of ammunition. On the contrary, he always says that he has so much in his arsenal. Really glad you are going for a second opinion.

I don't think you are pinning too many hopes on this second opinion. There are so many trials that could help.
What scares me is the Onc. statement that he doesn't know of any trials and he doesn't keep up on that. Sounds like he's sleeping on the job.

Yes, you're right, sometimes it's hard to believe we will beat this crap, but WE WILL.

Zimac
Posted 11/27/2012 2:47 AM (GMT 0)
Agree with Zimac. Ours doesn't give false hope, but says there is so much coming out we can consider. Hope you feel good with your 2nd opinion guy.
Posted 11/27/2012 11:07 AM (GMT 0)
Thank you all.
Shar, never lose hope. I may sound like I do sometimes but I don't!
Passages and Zimac, thank you both for affirming how we feel. I will report back after Friday's visit! We are so looking forward to this. I think we realize a lot of the time will be spent on the new doc getting up to speed on my husband's case but there will be time for questions and I have lots, thanks to everything I read here on HW!
Best to you all and your dad and husbands!
Posted Yesterday 12:14 PM (GMT 0)
nhwife

There are more weapons available for us Prostate Cancer Warriors, I'm surprised your current onc is not in the know.

One that really interests me is Alpharadin - www.healingwell.com/community/default.aspx?f=35&m=2572220

Time for the 2nd opinion!

Hugs to you and Nhhubby

Bud

We WILL beat this crap
Posted 12/8/2012 8:04 AM (GMT 0)
PSA before starting Xtandi Nov 12 was 1093. Dec 5th PSA dropped to 464. Because of so much back pain and PSA not back doctor was entering him his Radium 223, but after see drop in PSA we he keeping him on the Xtandi for as long as it works...hopefully better than Zytiga..only 6 weeks. We see Dr again in Jan...thrilled for lower PSA but I have to say his back pain has doubled if not more, knowing back pain is one of the first listed SE of Xtandi.
Posted 12/8/2012 12:15 PM (GMT 0)
Jitters, it is one of the SE! Spine compression. We are dealing with the back pain on and off again. Also a discomfort in the pelvic area, again on and off again. Plus fatigue.
We are learning the importance of sequential scans and I hope your husband has those. Determining failure should not just be based upon a rising PSA, which isn't the case in your case.
Keep me posted - we see our doctor in Jan as well.
Posted 12/11/2012 5:48 PM (GMT 0)
One month on Xtandi...PSA down from 1068 to 464 circulating tumor cells down from 132 to 11....so excited.. We understand it won't work forever but we will take it as long as it lasts...so excited for upbeat report to get us through the holidays!!!!
Dr. said we can go visit our kids in CT and stay as long as PSA remains under 500......maybe we'll see spring in CT!
Posted 12/11/2012 9:09 PM (GMT 0)
Jitters99--Wow, my ears pricked up from those encouraging statements about PSA plummeting with Xtandi. I have been on Xtandi not quite two weeks, now, and missed a dose here and there (when I was so nauseated I couldn't keep stuff down, much less GET down those huge pills!)

Seems that when I do take full dosage, the next day I am very lethargic. I had just had Samarium 153 Nuclear medicine as well, and have had greater bone pain needing greater opiates, etc., so don't know to what I can attribute many of these new feelings.
Posted 12/23/2012 4:41 PM (GMT 0)
Hi everybody,

I'm new to this forum and writing on behalf of my dad. I thought instead of opening a new thread I'll just post my question here...

My dad (age 70 with severeal bone metas) is on Xtandi since Dec. 1st... XD was 2004 and he went a long way through hormone therapy, taxotere and Zytiga lately. Zytiga worked great for about 3-4 month but then didn't work for him any longer and his doc switched him to Xtandi. Starting Xtandi with a PSA of 600, after nearly 4 weeks his PSA now doubled and his condition is getting worse every day.

Doc says that Xtandi needs its time and we should be patient, but how comes that his PSA doubled in just 4 weeks? (Zytiga worked great after just 2 weeks)

Is Xtandi known for a PSA flare-up? Anyone with a similar experience?

Thanks & all the best,
Paul
Posted 12/23/2012 6:01 PM (GMT 0)
Hi Paul, you should start your own thread just so you get the response you need.
My husband's PSA has gone up but has stayed on the xtandi. We have double appointments in early January with a scan and a lab test. We kind of figure the PSA may continue it's upward trend. And thus go on another treatment, not sure what at this moment. I think my husband hopes so because he has felt more side effects with this treatment than any other: fatique and pelvic discomfort.
I wonder about a flare-up effect though. I haven't read anything about that but it's such a new drug that I wonder if they just don't know yet!
No help to you - best to you and your dad.
Posted 12/23/2012 7:02 PM (GMT 0)
Hi nhwife, many thanks for your reply and sorry for just throwing in my question to this thread. I have followed your kind advice and openend a new thread:

https://www.healingwell.com/community/default.aspx?f=35&m=2594840

Best regards,
Paul
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