What happens once stopped xtandi trea... - Advanced Prostate...

Advanced Prostate Cancer

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What happens once stopped xtandi treatment

Karmj profile image
38 Replies

My father stopped xtandi over a

Month ago and no more treatments available to him due to his age and health. The oncologist doesn't want to see us any more and we have been told to prepare ourselves but he looks so well and not sure what happens now.

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Karmj profile image
Karmj
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38 Replies

If you could give us more details such as history of treatments with dates, his age, current status, PSA, blood counts, where the mets are and how extensive, etc. we might be able to help more. Also, in what geographic area do you live?

Karmj profile image
Karmj in reply to

Hello he has prostate cancer that spread to the bones. Tried lots of hormone therapy and finished on xtandi but psa over a month ago was 22. Side effects too bad and lost use of legs and no appetite. He has a bit of quality of life now as legs working but still weak. Just left now and waiting for something to happen but don't know what? We live in the uk

kenner profile image
kenner in reply to Karmj

Get your Father on 6000 IU of Vitamin D. Try to get him also on CBD Oil. Good Luck... PS Make sure your Dad has an adequate diet of whatever he wants. What the hell have some enjoyment as his appetite will now come back too.

Tall_Allen profile image
Tall_Allen

Does his age and health preclude chemo?

Karmj profile image
Karmj in reply to Tall_Allen

Yes they said he is too old and not strong enough for any other treatmenr

Tall_Allen profile image
Tall_Allen in reply to Karmj

You may be able to try estrogen patches, unless he has problems with blood clots.

Dan59 profile image
Dan59 in reply to Tall_Allen

It is my understanding that transdermal estradiol patches bypassed first pass in the liver and did not have a much of a blood clot issue. sciencedirect.com/science/a...

Karmj profile image
Karmj in reply to Dan59

They have said no

More treatment. Dad is 80 and had enough. We as a family just want to know what will happen now

Tall_Allen profile image
Tall_Allen in reply to Dan59

Patches REDUCES CV events compared to pills but still cause some. In this larger, randomized study comparing estrogen patches to LHRH agonists, cardiovascular events occurred in 6 men of 84 (7·1%) in the LHRHa group and 17 of 169 (10·1%) men in the estrogen-patch group.

thelancet.com/journals/lano...

EdBar profile image
EdBar in reply to Tall_Allen

That's still a pretty small study group, I wonder how they ruled out all other factors, like diet and life style, family history, did the persons cancer cause a clot to form etc?

Tall_Allen profile image
Tall_Allen in reply to EdBar

It was RANDOMIZED - so both groups were substantially the same on all other factors. They expanded the trial - we'll have more data in 2021.

EdBar profile image
EdBar in reply to Tall_Allen

You may want to watch this video to see what Dr. Myers says about the use of estradiol including two in depth studies of its use for men with PCa, enjoy!

m.youtube.com/watch?v=KBpg_...

Tall_Allen profile image
Tall_Allen in reply to EdBar

Thanks, but I don't have time to watch videos - only published reports.

EdBar profile image
EdBar in reply to Tall_Allen

He speaks of two you may want to read. And it might be of interest to others on this site.

SUPERHEAT12 profile image
SUPERHEAT12 in reply to EdBar

Great to see Dr. Myers again. Now I know why he put me on the estrogen patch many years ago when I was on casodex, avodart and other ADT. I am sure he told me but I was listening well at that time. Great respect Tall Allen but think Dr. Myers videos are thoughtful and well documented.

Karmj profile image
Karmj in reply to Tall_Allen

They have said no more treatment. Dad 80 and had enough now but as a family we don't know what will happen now to him

in reply to Karmj

If he's not going to get further treatment, he will need to focus on palliative or comfort care. That involves just making the patient as comfortable as possible for the rest of whatever remaining time they have. Usually this can be done at home, allowing family and friends to visit, help etc.

You could contact the hospice care, I don't know the setup over there in the UK, but wherever you are going for treatment should know.

I wish you the best.

ctarleton profile image
ctarleton in reply to Karmj

I am sorry the oncologist has seemed to have abandoned you and left you hanging. Some of the people and the information at this link may be useful in finding some "next steps" ahead.

nhs.uk/conditions/end-of-li...

I wish you the best.

larry_dammit profile image
larry_dammit

Sorry to hear of your fathers plight. My dad is 86 and was just told that he has Mets in his pelvic bones and lymph nodes. Waiting to meet with oncologist,afraid he will say the same. It’s a real mess as I sit here with stage 4 myself. Fight the good Fight 🙏🙏🙏🙏

Coopertino profile image
Coopertino in reply to larry_dammit

Forgive me but at 86 I say leave him alone😞

Magnus1964 profile image
Magnus1964

What other ADT drugs has he taken? The doctor may have started with xtandi because of his age and condition. But I my guess is he has not been prescribed Zytiga or Casodex. Either of these could provide extended life for him without going to chemo or radiation.

leo2634 profile image
leo2634

It sounds like Dad saying he's had enough out weighs the treatments so many of my Brothers here have suggested. If Dad is giving up not much of any advice will charge things. My thoughts and prayers are with you and your Dad. His life his decision.

larry_dammit profile image
larry_dammit in reply to leo2634

Met with doctor yesterday , prognosis is as suspected, he can do three different treatments. But in the end it will do little, 2-3 years with or without treatment. 😡😡😡😢

Karmj profile image
Karmj in reply to larry_dammit

Sorry to hear that. At least you have an idea of timescales to enjoy what time you have left. We have no idea of how long my dad has just told to prepare myself. He is doing well at the moment, eating loads and walking well just a bit wheezy after moving - not on any treatment so every week will probably be different

larry_dammit profile image
larry_dammit in reply to Karmj

Just make sure he has plenty of pain meds to be comfortable, that’s what my doctor said. No reason to be feeling bad. God bless 🙏🙏🙏🙏🙏

Drgucancer profile image
Drgucancer

I agree if your Father is comfortable physically and at peace then more advice is probably not what you need. I am also sorry his oncologist has not remained at his side to help be your support and guide.

If you are looking for other options. Just because he didnt tolerate full dose Xtandi (4 pills) he could tolerate and get a response out of 1 or 2 capsules per day. I would consider a check point inhibitor like Opdivo. Low dose Zytiga. And he could also receive lower dose Taxotere 50% dose reduction. Xofigo? If bone pain. Just thoughts! God Bless!

Rmanns profile image
Rmanns

My father chose to stop Zytiga (very similar drug) under similar circumstance. He hung on for several months and began to have pain and trouble eating.

He entered a hospice when he could not transfer. He stopped speaking and gently passed.

He was older but looked good and didn't have much pain until the end. Sorry he and you have to experience this.

Karmj profile image
Karmj in reply to Rmanns

Thanks for your reply. I am sorry your dad passed away. It's so horrible. My dad seems to be doing well at the moment and I can't seem him going downhill for ages but everyone keeps telling me to prepare myself.

Rmanns profile image
Rmanns in reply to Karmj

It happened quicker than I expected. But that seemed merciful. My best wishes to all of you. Take care of each other.

Stegosaurus37 profile image
Stegosaurus37

To start with, he needs a new oncologist. For your current one to refuse to see him is unconscionable.

NWLiving profile image
NWLiving

Im glad you asked the question about happens when you don’t respond to the treatments anymore and the disease has taken over your body. It’s such a weird mix of staying hopeful, enjoying today but also worrying about what the end will look like.

Karmj profile image
Karmj in reply to NWLiving

Thanks

j-o-h-n profile image
j-o-h-n

Hug him, Kiss him, love him..... Remember God is on his side...

j-o-h-n Tuesday 08/28/2018 6:53 PM EDT

BrianE profile image
BrianE

I am also having to make decisions about my ongoing treatment as Zoladex and Casodex have failed, the bone mets in my hips are spreading and recent scans have shown mets in my pelvic lymph nodes.

I shall not be having chemo due to age, diabetes and heart problems but will probably have Zytiga which will buy me a few more months.

I have put my wishes writing which is, when the time comes, to enter into palliative care and be allowed to die with dignity with as little pain as possible.

As I approach my 82nd birthday I have just had a lovely visit from my daughter who is going home today and she accepts my position.

Love you Dad and let him go.

Brian

Karmj profile image
Karmj in reply to BrianE

My dad celebrated his 80th birthday yesterday and seems to be doing well. Doesn't go to the loo all day and then at night goes every 2 hrs!!

Grumpyswife profile image
Grumpyswife

At age 75 my husband and I have discussed end of life issues at several times through out the 18 years of prostate cancer. You need to remain on good terms with an oncologist or palliative doctor who will prescribe pain killers for end of life.

There are a few posts here that I found so helpful for learning what it will be like at the end but they are few and far between the positivity ones. As a caregiver I prefer to have the knowledge to be prepared to make it as peaceful departure as possible.

FrancescaO profile image
FrancescaO

We seem to be in a similar situation. My father is 93...but an extremely young 93. He has advanced metastatic pc. He is taking monthly injections of Degarelix and monthly IV of Zometa. For pain he is on Morphine and Dexamethasone. He was on Xtandi which he had no side effects it just wasnt working anymore. They prescribed Zytiga and Prednisone...but he doesnt want to take. He honestly feels so good every day and for now pain is under control...but he just doesnt want to take meds any longer. Its his decision. He has refused radiation as well.

One day he called me and said...”Do I have to take the Zytiga?” and I said Dad it is your call you can do what you want..His answer was “Thanks, you eased my mind...I’m going to go watch the football game.”

We hung up, I cried, and I’m sure he enjoyed his game.

We have supported his decisions and at some point the IV and injections will probably stop and we will continue to support him and keep him happy and pain free.

Support on this site is amazing...I have become so much more knowledgeable

Karmj profile image
Karmj

Hell, dad is now in so much pain and is losing the use of his arms and legs, we are off up the hospital today to see if they can get the pain under control

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