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What next after chemo?

User
Posted 30 Apr 2023 at 17:38

Hello, I am new to this forum but have had previous support from Prostate UK.

My lovely husband 74, now has extensive metastatic cancer in multiple sites. He took Enzalutamide for 2 years and now has just had his 5th session of chemo out of 10. He is on a high dose of slow release morphine due to a fracture in the vertebrae and morphine inevitably makes him tired. Presumably after the chemo, his treatment options have gone? Will he get rid of some of the side effects from the chemo when it stops or will there just be a gradual deterioration of his condition. I find it hard to know answers to such questions because my husband does not want to know his prognosis. I cannot ask his oncologist when we see him together because of this but I really want to know what to expect. Can anybody help me to better understand please?

User
Posted 21 Oct 2023 at 13:58

My amazingly brave and totally loved husband Andy lost his battle 2 weeks ago. Cant believe he has passed away after 52 years together. Sadly his cancer was very aggressive and mets were extensive and 6 months of chemo couldn't help. But never give up - the treatment didnt work for us but can be more positive for others.  Andy was at home hand in hand with me when he passed which is just what we wished for, when we started on the road of hospice care at home. He received the most wonderful care from qualified nurses (Shipston home nursing)                 I send my love and support to all those on their own journey. Keep fighting this disease            Joy x

User
Posted 02 May 2023 at 13:15
Okay - s once the chemo has finished, they may offer Radium 223 which can sometimes be effective on bone mets. If not, they will talk about handing you fully over to the palliative care team so that whatever time he has left, his quality of life is as good as it can possibly be. A lot of that is about balancing pain meds so that the person has as little pain as possible without being knocked out all the time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 May 2023 at 14:25

Thanks Michael,

Its good for me to share and hear about others. I want to know as much as I can to be able to cope with the future. My husband Andy deals with his cancer in a totally different way (it would be a boring world if we were all the same wouldn't it?)

I wish you well in your treatment and further options.

User
Posted 21 Oct 2023 at 14:55

So sorry to hear about your husband sending my deepest condolences 

Ann 

User
Posted 21 Oct 2023 at 15:16

Joy

I am deeply saddened to hear of Andy's passing. Please accept my sincere condolences. I hope you can gain some solace from knowing what a very loving, kind and caring wife you were.

Adrian

Edited by member 21 Oct 2023 at 16:01  | Reason: Not specified

User
Posted 21 Oct 2023 at 20:35

Joy,

I'm so sorry for your loss.  It must be very hard to watch someone deteriorate and then to pass away before your eyes.  I hope you can find peace in the knowledge that you did everything you could to ease his passing.

Best wishes,

JedSee. 

User
Posted 21 Oct 2023 at 21:46

Joy, I'm sorry the two of you went through this. You clearly did very well with supporting him. My thoughts are with you.

User
Posted 21 Oct 2023 at 21:51

I’m so sorry to read your news; thinking of you and hoping that your love and memories shared over the years sustain you going forward. X

User
Posted 21 Oct 2023 at 23:05

Joy,
I’m very sorry to hear about your sad loss and I send you my deepest condolences. It’s good that you’re able to spent his final moments with him, and hopefully you will lots of wonderful memories to look back on and lots of support from family and friends moving forward.

Derek.

User
Posted 22 Oct 2023 at 00:33
So sorry to see this Joy. In his final days and moments, he had the touch of your hand, your voice to soothe him and the knowledge that you were by his side and this will comfort you in the difficult times ahead.

All I can wish for you just a little bit more of the strength you have already shown x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 30 Apr 2023 at 23:07
Hi, I went through what you are going through now with my Dad over 20 years ago.

You don't mention how well your hubby is responding / reacting to the chemo I guess this will govern his prognosis.

Regardless of prognosis you need to make sure your GP has put in place contingencies for palliative care, you need to make sure you have this in place so you can make the most of remaining time however long that turns out to be.

You could also ask about any trials that may be available if you are both keen to pursue further treatments.

Hope things work out as well as they can for you both.

User
Posted 30 Apr 2023 at 23:45

Sorry you're going through this.

In reality, his oncologist probably can't predict what will happen, and plenty of times when they do, it's wrong.

The chemo will hopefully knock the cancer back for a while. They often can't tell for the first 4 or so sessions if it's going to work, because the chemo itself can push up the PSA temporarily. I'm guessing he's having Docetaxal. If that works for a while, he can have it again. If it doesn't work, there's a second chemo drug Cabazitaxel which they might try. Obviously, further chemo depends on being well enough to handle it.

If his mets are only in bone, then there's Radium 223.

If his mets are not only in bone, there's Lutetium 177, but I'm not sure where that is with NICE/NHS approval. It was refused last year but was being appealed. There have been some patients on trials with it which might be another possible route.

If he would be interested in trials, make sure his oncologist knows that.

I would also emphasise you need to get provision for palliative care in place, before it's needed. Talk to the CNSs about it, and see what sort of services such as hospice at home are available and get them engaged, so they're ready to go when you need them. They are often better at pain management than hospital services, and they might make some good suggestions about handling his current pain.

User
Posted 01 May 2023 at 14:26

Thank you. We have the palliative care team on board and they phone regularly. They have recently sent out physios as Andy's balance is not good. He has a nasty fall when we were out a few weeks ago and ended up in A&E. This has really knocked his confidence.

There has been talk of 'periferal neuropathy' as he finds it difficult to pick his feet up and occasionally gets pins and needles in his fingers. I believe they may have to stop the chemo if this gets any worse.

Mets are only in bone so far. Thanks for the contact

User
Posted 02 May 2023 at 00:33
Liz, have they stopped the enzalutimide?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 May 2023 at 11:42

Hi Lyn

Yes Enzalutamide was stopped as it was no longer working. PSA was rising and bone scan showed spread.

User
Posted 02 May 2023 at 13:15
Okay - s once the chemo has finished, they may offer Radium 223 which can sometimes be effective on bone mets. If not, they will talk about handing you fully over to the palliative care team so that whatever time he has left, his quality of life is as good as it can possibly be. A lot of that is about balancing pain meds so that the person has as little pain as possible without being knocked out all the time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 May 2023 at 13:30

I am in this situation Lizjoytuf with the same plan for 10 chemos but no sign of improvement after 4.  I have had a full set of new scans and I think a meeting after to see what is going on and what to do.  I think Lyn is spot on with possible Radium.  One thing they have done with me is to do some BRCA genetic testing but no results in yet on that.  That could open up some options to an extra drug or access to trials.  I am not sure they would try Cabazitaxel which is a different type of chemo.  Whatever I guess for your husband he will be like me and wanting to balance quality of life with pain management and the worth of engaging with other treatments.  I did ask about prognosis for retirement reasons as I am younger than your husband.  My oncologists view is that it is super subjective and new trials and possible treatments open up all the time. 

Sending positive thoughts and solidarity to your husband and wishing him well.  Same to you. 

Best wishes

Michael 

User
Posted 02 May 2023 at 14:25

Thanks Michael,

Its good for me to share and hear about others. I want to know as much as I can to be able to cope with the future. My husband Andy deals with his cancer in a totally different way (it would be a boring world if we were all the same wouldn't it?)

I wish you well in your treatment and further options.

User
Posted 21 Oct 2023 at 13:58

My amazingly brave and totally loved husband Andy lost his battle 2 weeks ago. Cant believe he has passed away after 52 years together. Sadly his cancer was very aggressive and mets were extensive and 6 months of chemo couldn't help. But never give up - the treatment didnt work for us but can be more positive for others.  Andy was at home hand in hand with me when he passed which is just what we wished for, when we started on the road of hospice care at home. He received the most wonderful care from qualified nurses (Shipston home nursing)                 I send my love and support to all those on their own journey. Keep fighting this disease            Joy x

User
Posted 21 Oct 2023 at 14:55

So sorry to hear about your husband sending my deepest condolences 

Ann 

User
Posted 21 Oct 2023 at 15:16

Joy

I am deeply saddened to hear of Andy's passing. Please accept my sincere condolences. I hope you can gain some solace from knowing what a very loving, kind and caring wife you were.

Adrian

Edited by member 21 Oct 2023 at 16:01  | Reason: Not specified

User
Posted 21 Oct 2023 at 20:35

Joy,

I'm so sorry for your loss.  It must be very hard to watch someone deteriorate and then to pass away before your eyes.  I hope you can find peace in the knowledge that you did everything you could to ease his passing.

Best wishes,

JedSee. 

User
Posted 21 Oct 2023 at 21:46

Joy, I'm sorry the two of you went through this. You clearly did very well with supporting him. My thoughts are with you.

User
Posted 21 Oct 2023 at 21:51

I’m so sorry to read your news; thinking of you and hoping that your love and memories shared over the years sustain you going forward. X

User
Posted 21 Oct 2023 at 23:05

Joy,
I’m very sorry to hear about your sad loss and I send you my deepest condolences. It’s good that you’re able to spent his final moments with him, and hopefully you will lots of wonderful memories to look back on and lots of support from family and friends moving forward.

Derek.

User
Posted 22 Oct 2023 at 00:33
So sorry to see this Joy. In his final days and moments, he had the touch of your hand, your voice to soothe him and the knowledge that you were by his side and this will comfort you in the difficult times ahead.

All I can wish for you just a little bit more of the strength you have already shown x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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