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XTANDI Information please

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Posted 1/13/2015 11:46 AM (GMT 0)
Hello,

Dad is now on treatment 9 of 10 of Taxotere. Consultant says no to Jevtana for futher treatment it would be too hard to tolerate also it is being removed from the NHS drugs funding.

Xtandi will be his next line of treatment, can anyone tell me how successful this has been is there any life extension? improvement with quality of life?. Experience's good and bad please.

Thank you
Theresa
Posted 1/15/2015 7:15 AM (GMT 0)
Hi Theresa,
I'm surprised you haven't received more response to your query. My husband was on cyanide for a short time and it did not live up to the hype for him. The onc switched to chemo fairly soon afterward. It was mega expensive copy for us too. I know some guys here have had success, so I hope they weigh in. We were hoping for Provenge too, but it seems to be having issues. Let me know how it goes.
Beth n Gary cool
Posted 1/15/2015 7:19 AM (GMT 0)
Oops...Gary was NOT on cyanide, but xtandi. That is not a therapy I'm aware of for PCa yet!! Should have looked for typos prior to post. Apologies.
Beth
Posted 1/15/2015 7:50 AM (GMT 0)
Hello Beth and Gary,

Thank you for your reply, I have searched the internet but information on xtandi success just isn't out there. I am so worried we are coming to the end of treatment. The oncologist has said this is the last active treatment Dad will receive. I am so disapointed that Dad cannot try Jevtana with one breath the consultant said it would be to harsh, next breath he says Dad is the healthist man of his age that he has ever treated!!! I am guessing that because Jevtana isnt going to be funded by NHS from March they have stopped starting new patients.
May pay private its around 22 thousand pounds

So many brave men and carers on this site it has been so helpful and given me the courage to ask questions and put up a fight for treatment.
The knowledge on this forum is such a help so thank you to everyone who is sharing their experiences.

May 2013 - PSA 800+
kidney stents
HT injections every 3 months lowest reading PSA 20
Casodex - Failed no success with this
July 2014 - Taxotare 9 treatments so far lowest PSA 461
Jan 2015 - PSA 525 one more Taxotare treatment to go
then it will be xtandi
Posted 1/15/2015 8:05 AM (GMT 0)
Hi theresa,
Is jevtana the same as cabazitaxil? If so, that was the chemo that had the least side effects for Gary and it worked well for at least a year. Don't give up. Maybe the drug company has an aid program. Email me if you like,and I hope the other guys with more knowledge than me will join this thread soon. Good luck!!
Beth
Posted 1/15/2015 4:05 PM (GMT 0)
Hello Beth

Yes it is cabazitaxel it is the same Chemo, the research I have done implies that it is a well tolerated drug.

Dad has had very few side effects from the taxotere (Docetaxel), and quite a bit of improvement in mobility and he is able to enjoy life which is why I was keen to get him on cabazitaxel.

I do hope Gary is doing well on his current medication, I see he has had a few treatments that are not available here on the NHS, Provenge isn't available here but I have read some good reports on it. I do hope Gary is able to give it a go.

I haven't given up yet will research to see if there are any aid programme's also look into paying privately. NHS is brilliant but to stop live extending drugs disgusts me. The excuse the benifits are not worth the costs.

I was looking for information on xtandi to work out if it was worth trying first and then looking into Cabazitaxel (jevtana). I just want to know we have given Dad the best chance of extending his life with quality.

Sending Best wishes and prayers
Theresa
Posted 1/15/2015 8:02 PM (GMT 0)
Theresa
See my post to Don "under to continue or not continue".

For me Xtandi has been miraculous and except for increased fatigue and perhaps an increase in hot flushes ( this is a bit hard because I am in summer now and the weather has been very hot anyway).

I really don't feel any difference to the SE from ADT (Zoladex).
Posted 1/15/2015 8:19 PM (GMT 0)
Hi RangerTug,

Thank You, Information greatfully received

Theresa
Posted 1/15/2015 9:37 PM (GMT 0)
Theresa,
Here is a post on my thread. I did not identify poster but you can read my thread if you want to know.

Best,
Don

I know we are all different and drugs have different effect/reactions with us, also our cancers are all different but for me Xtandi has had a miraculous result so far.
March PSA 24 Xtandi
April 18
May 2.4
June 0.99
June 0.79
Sept 0.46
Oct 0.24
Dec 0.20

I am generally in good health and feel well, I have a few issues with the SE of the ADT but you just try to work around them as best as you can. I find the mental side is the hardest and it is always lurking in the back of your mind "when are things going to change".

But considering my G9,PSA of 254 at Dx and bone mets I feel I am a positive story.
Posted 1/16/2015 2:50 AM (GMT 0)
Theresa - My husband was on Xtandi but for a very short period of time - the side effects were too much for him, though he has tolerated so much for so long. Everyone is different as I know you've heard before.

What a wonderful daughter you are. The background research, learning what may be best for him and with an eye to how he lives out his life. You are truly a blessing.

I sincerely hope for a good answer for you both.
Susan
Posted 1/16/2015 4:49 AM (GMT 0)
Hi Theresa,

Is Zytiga is available through the NHS system? Zytiga together with Xtandi are the new second-line hormonal therapy drugs. So, if available, Zytiga should definitely be another option.

I believe there are trials now combining both drugs. Are clinical trials an option for you? While we don't know if this'll make a difference, there is an increasing realization among oncologists, that combination therapies are the best way to go in battling cancer.

Is your dad's oncologist open to trying "out of the box" treatments? For example, adding Xtandi, while your dad is on Taxotere? Or, potentially combining Xtandi with estrogen patches?

Arthur
Posted 1/16/2015 6:22 AM (GMT 0)
Hey Theresa,
I am surprised the NHS would pay for xtandi and not jevtana as our onc made it sound like it was the best tolerated and most effective chemo on the market. Xtandi is very expensive, but zytiga was used first on Gary with great results. I wonder though if you can convince your dad's medonc to give jevtana a try before it goes away.
Thanks for asking bout Gary. He has had 3 rounds of radiation to his sacrum and experiencing nausea and hip pain. We drive 3 hrs there and back for ten treatments Mon-Fri. Long days! Still don't know what his psa is from last week's test.
Good luck with you dad's treatment! Let us know how it goes.
Beth wink
Posted 1/16/2015 5:43 PM (GMT 0)
Hi,
Thank you for your replies, I feel that we have become very restricted here, Oncology Consultat told me that Dad could have Zytiga or Xtandi but once you have had the one the other will not be prescribed his advice was Xtandi.

As far as jevtana goes there is no way he will prescribe the medication. I went with Dad to try and get him on the drug before it is taken off the market. I worked hard at trying but no way was he giving in. Told us that it is hard to tolorate and Dad wouldn't pass the criteria to receive it now as they are restricted on the new patients they give it to over the next month or two (guess its because Dad is too old).

Beth, I do hope Gary has success with the radiation treatment, Dad had one shot on spine, and both hips pain was worse before it got better (about 10 days). I feel for you both with the long journey's it is quite exhausting. Dad and I only travel about 1 hour each way and with the appointments being approx 2 hrs behind and 2 hour treatment and thats exhausting so I feel for you guys.

I would like to thank you all for your replies the information is very useful. I will use this information to spend money wisely when it comes to choosing which way to go when paying because as I am sure you all know everything is so expensive. Life is priceless but unfortunatly our bank accounts are not bottomless.

God bless you all as always your in my prayers. Keep fighting!
Posted 1/16/2015 8:41 PM (GMT 0)
My father benefited from Xtandi for about 6 months and then PSA went crazy. Our Dr in the USA says the same about Jevtana. After researching and actually speaking with men who took it, we have opted to pass! It can be be ugly in several ways. I found only 2 in 20 could tolerate.
Posted 1/17/2015 4:14 AM (GMT 0)
Theresa...I had very little success on Xtandi and only took 4 months worth....but then again I was coming from 13 months of Zytiga which worked very well for that time.

My PSA leveled at 20 and stayed there one month...then climbed to 28.....the next month it went to 55 at which point I stopped and received my first taxotere infusion.....my last PSA was 109 the day I got my first chemo.....so I can say I got maybe 2 months of my PSA being stable from Xtandi. Also the side effects were worse for me than Zytiga....lots of nausea and body aches.
Posted 1/17/2015 6:26 AM (GMT 0)
Hi Theresa,
It frustrates me so much that you are having to make those kind of choices based upon your dad's age and cost. I complain a lot about our broken health care system, but at least we have not been limited to one ht and one chemo. From our experience, the zytiga worked so much better than xtandi. Did you doc say why he preferred xtandi?
Gary is feeling a lot better today, able to eat and we have weekend off to catch up on sleep smilewinkgrin
I wish you the very best with the treatment your dad receives and I do hope it gives him relief and lowers his psa. Keep us posted.
Beth
Posted 1/18/2015 9:44 PM (GMT 0)
Teresaxx1961, my husband was on Xtandi from January 2013 to October 2013. PSA went down but then climbed, so that was when we went to Jevtana. You must be from the UK or Canada, I think there is another member who is on this forum who is from the UK as well.

Casper319, husband on Xofigo, but has had to postpone due to platelet count going down (now 32,000). Scheduled for 5th injection but can't have it until count get above 100,000. Also PSA has started to climb again....now up to 112. How has your platelet count been since you've been on Xofigo?

I started a thread "starting Xofigo/Radium223 and have posted on it several times. Also check "Caregivers" thread, a lot of information and support on that thread.
Posted 3/18/2015 6:36 AM (GMT 0)
Hello,
I thought I would post a quick update, Dad did get to try Jevtana he is having his last Jevtana treatment today. Oncology are amazed at how well he has tolerated chemo as it is not usual to have 9 Taxotere treatments and then go straight on to Jevtana this will be his 3rd treatment on Jevtana. Even though his blood counts are still good his PSA continues to rise now around 1000.

Next treatment will be either Enzalutamide (xtandi) or Abiraterone (zytiga). In the UK you can only have one or the other and Xofigo is not funded by the NHS so this will be his last active treatment. I am so proud of Dad's determination to fight this illness, he has been very lucky side effects have been slight but he has never complained.

Dad started the Prostate cancer fight just over 2 years ago with a PSA of 800, first symptom being stiff back, constipation and having to attend A&E due to urine retention. He has stents in both Kidneys due to the cancer. Dad was just shy of 80 when diagnosed with no other health problems.
The fight goes on.
Wishing you all well.
Theresa
Posted 3/18/2015 9:37 AM (GMT 0)
Thanks for posting an update Theresa. Your Dad is truly a fighter. Yes, you should be very proud of him. Best wishes with the next treatment.
Posted 3/19/2015 3:28 AM (GMT 0)
Hi Theresa :
Get the phone number to the jevtana company see if they will give it to your Dad under compationate . All you can do is ((Beg)) I mean ask. They can only say no at which point you remind them this is life and death call on their part. My husband Dave did the xtandi but he didn't do well and was only on it for 2 months. His psa kept going up and he was totally fatigued and lost appetite. But side affects are diffrent for each man. Dave and drugs that are homone driven don't seem to do much. We have I think gotten approved for jevtana. Right now he has just had his 4th xofigio injection. Dave is 64 next month .
Posted 3/19/2015 5:58 PM (GMT 0)
With cancer treatment, almost ANY cancer treatment, unless you can somehow get someone else to pay for the drugs, insurance or government, your choice is bankruptcy or greatly reduced survival time...The benefit provided by some of these drugs does not begin to justify their costs......

I hate to say this, but there is a lot of people getting rich off our agony and desperation...The Chemo Lounge is the biggest profit center in the medical profession....
Posted 4/18/2015 6:21 AM (GMT 0)
Hello,

Dad had 9 Taxotere treatments and then went onto Jevtana but after 2 treatments was told it wasnt working. He is now on Xtandi just wondered how soon do you see any results from this treatment.

Keep fighting
Theresa
Posted 4/18/2015 9:58 AM (GMT 0)
Hi Theresa,
Sorry to hear that the treatments are not working for your Dad. I enrolled in an Xtandi trial on 2/16/2015 with a PSA of 15+. Four weeks later it was 2.73 and last visit on 4/6 it was 1.22.

I hope it works for him.

Best to both of you.

Don
Posted 5/5/2015 6:15 AM (GMT 0)
Bad day for Dad yesterday, in so much pain unable to move right leg. It turns out he has a fractured Hip due to the cancer.
we will Find out today if he will have partial or full hip replacement.
Posted 5/6/2015 1:36 AM (GMT 0)
So sorry to hear that about your Dad ! Prayers and thoughts for a successful surgery! 💙
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