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Devastated at prognosis

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User
Posted 19 Aug 2022 at 22:47

Age 54, Diagnosed with advanced prostate cancer in October 2020 with a 5 year prognosis,  we now feel utterly devastated that only 22 months down the line we've been told 3 months left.  Abiraterone lasted 11 months then all this year every treatment has failed:docetaxel,  cabazitaxel,  Radium223 (3 sessions).  Spread to abdomenal lymphs and lesion on lung. 

We know everyone responds differently to treatments but we never expected this.  We weren't told that the treatments might not work so we really thought we had 5 years at least.    Last year was great on abiraterone but wish we had done more whilst the health was on our side. 

We will explore lutetium-177 but the logistics, risks and QOL need to be carefully considered. 

Sending best wishes,  better outcomes and strength to all you wonderful men,  and families who are on this journey.  

X

 

User
Posted 20 Aug 2022 at 11:12

Sorry to hear this. I wish I could offer some practical advice, but I can't. All I can do is let you know that this forum is full of people who care about each other and we share the good and the bad times with each other, sometimes it makes us happy and sometimes sad.

Dave

User
Posted 19 Aug 2022 at 22:47

Age 54, Diagnosed with advanced prostate cancer in October 2020 with a 5 year prognosis,  we now feel utterly devastated that only 22 months down the line we've been told 3 months left.  Abiraterone lasted 11 months then all this year every treatment has failed:docetaxel,  cabazitaxel,  Radium223 (3 sessions).  Spread to abdomenal lymphs and lesion on lung. 

We know everyone responds differently to treatments but we never expected this.  We weren't told that the treatments might not work so we really thought we had 5 years at least.    Last year was great on abiraterone but wish we had done more whilst the health was on our side. 

We will explore lutetium-177 but the logistics, risks and QOL need to be carefully considered. 

Sending best wishes,  better outcomes and strength to all you wonderful men,  and families who are on this journey.  

X

 

User
Posted 20 Aug 2022 at 01:02
So sorry despite what has been thrown at it, the disease has advanced faster than Consultant suggested which was perhaps more of an average. Perhaps a small number like you do worse and others much better so this should have been better explained at the outset, particularly as a personal forecast before a patient's response to treatment cannot be known for certain.

Can understand the way you feel about having lutetium 177, particularly in view of disappointing response to other treatments and loss of QOL.

Although present treatments have stopped working, remaining life expectancy could extend past three months albeit with less QOL.

Barry
User
Posted 20 Aug 2022 at 01:10

Originally Posted by: Online Community Member
Sorry the treatments have failed him Highland Lass.

Have they considered the old fashioned oestrogen based therapy? Sorry I can't remember what it's called..

Stilboestrol - definitely worth asking about

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

User
Posted 20 Aug 2022 at 08:32
So sorry to read this. It seems so aggressive with the treatments not working. Fills me with dread also :-(

All fingers crossed for you all x

User
Posted 20 Aug 2022 at 12:55

Most of us tend to do better Highland Lass, so I am always shocked when I read a story like yours.  We can never underestimate what this cancer can do.

Sending you and yours my best thoughts.  Just wish there was something we could do.

User
Posted 20 Aug 2022 at 13:42
So sorry to read this, I hope you are ok. Horrible disease, just horrible.
User
Posted 20 Aug 2022 at 18:15
So sorry, I hope the remaining time is as comfortable as possible

Bill

User
Posted 20 Aug 2022 at 18:34

Highland lass, sorry to hear your news, sending love and hugs.

Thanks Chris 

User
Posted 20 Aug 2022 at 18:45

So sorry to hear your news Highland lass and I am thinking of you both.

Regards

ANN

 

User
Posted 20 Aug 2022 at 18:50

So sorry to hear this devastating news like Dave said you are amongst friends on here we care about one another sending hugs  gaz

User
Posted 20 Aug 2022 at 19:38
Like everyone else on this thread so sorry to hear your news. It really does put this horrible disease into the headlights when you hear a story like your's. Too many lives lost to this awful cancer, Sending my thoughts and hugs.
User
Posted 20 Aug 2022 at 19:45
So sorry about your terrible news - sending hugs and hope that you get all the support and help
User
Posted 20 Aug 2022 at 20:35

So sad, as has been said, it’s such a shock to read this. Sending you virtual support and caring thoughts. 

User
Posted 21 Aug 2022 at 16:46

Hi Highland Lass,

So sorry to hear your news update.Your family are in our thoughts and prayers .

Kind Regards

Norm

User
Posted 21 Aug 2022 at 17:06

So sorry to hear this news highland lass our thoughts are with you and your family xx

User
Posted 21 Aug 2022 at 17:37

So sorry to read this Highland Lass. My thoughts are with you and yours. 

Ido4

User
Posted 22 Aug 2022 at 17:44

So sorry to read this HL. Devastating is an understatement and we must never underestimate this horrific disease. I hope you both get all the support you need. Sending love and strength x

User
Posted 22 Aug 2022 at 19:17

Being myself diagnosed in May 2021 I am utterly shocked and so sad to read your post HL. Life is so precious and so unfair sometimes. Sending you both strength and prayers

Edited by member 22 Aug 2022 at 19:18  | Reason: Not specified

User
Posted 22 Aug 2022 at 23:41

So So sorry to read your news HL.  

Sending our love and strength to you both.  

Praying there is something that can be tried that will give more time and QOL. 

Elaine xx

User
Posted 23 Aug 2022 at 08:15
So sorry to read this news Highland lass. Our thoughts are with you both and your family xx

User
Posted 25 Aug 2022 at 05:57

Your journey from year 2 has been relentless and terrible for you both and your family. Utterly tragic and unfair. I’m so so sorry.

Your support and devotion to your husband is inspiring and no doubt your union has and continues to be an anchor in such sad and turbulent times. 

Sending our love and prayers.

Matthew 

User
Posted 26 Aug 2022 at 05:03

Highland Lass

so so sorry to hear your sad news. stay strong x

User
Posted 28 Aug 2022 at 07:21

So sorry to hear your awful news. I hope as a minimum that pain can be managed and that you're not overcome with regret of the things you didn't do... you were so busy trying to fight this disease with such might and that was always going to be your priority. 

 

Thank you for sharing your story, heartbreaking as it is, I have found comfort in many of your words and will heed your advice about making the most of the time we have left. 

Thinking of you both xx

User
Posted 01 Sep 2022 at 23:20

I am so very sorry to read your news Highland Lass. It never ceases to amaze me how every man’s journey is so unique in terms of reacting to therapies and treatments. 

The doctors do give a generalised average prognosis and each time we receive one of these it’s like jumping right back on the rollercoaster. We have been told more than once my OH has six months but thankfully has surpassed these estimates. The consultants can only go on averages and obviously some last longer and some not so long. 

I totally empathise with the shock and feelings you are both having to deal with and I can only send you love, thoughts and prayers 🙏 

Best wishes

SunnyJane xx 

User
Posted 07 Sep 2022 at 07:45
So sorry. Life is not fair.
User
Posted 08 Sep 2022 at 15:20
So sorry to hear your news. Words and prayers seem so inadequate at times like this but all so often are all we have to offer. Thinking of you both.
User
Posted 11 Sep 2022 at 09:16

So sorry to read this Highland Lass. This is a very cruel disease 😢 xx

Debbie xxx
User
Posted 12 Sep 2022 at 14:04

You don't say whether his tumour has been DNA-sequenced. If it has a BRCA mutation than a PARP inhibitor may help. Keep fighting.

User
Posted 13 Sep 2022 at 17:32

Hello Katie

My thoughts are with you, your dad and family. Hopefully there are treatment options still available and BRCA is positive. Certainly opens more options ie oliparib. Interestingly in the past week my husband has been feeling the best he's felt all year. He's up and walking, appetite returned and able to do some tasks independently again. Two months ago he had to use crutches and a wheelchair! So it's been great to see him mobile again. We think it's due to good pain management and dexamethasone steroids.

Husband's s liver lesions were only picked up on the pet scans done in London two wks ago. He had a CT scan middle of August and nothing picked up then. He hasn't had any symptoms though.

Wishing the very best for your dad and hope he's doing OK meantime.

X

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User
Posted 20 Aug 2022 at 00:19
Sorry the treatments have failed him Highland Lass.

Have they considered the old fashioned oestrogen based therapy? Sorry I can't remember what it's called..

User
Posted 20 Aug 2022 at 01:02
So sorry despite what has been thrown at it, the disease has advanced faster than Consultant suggested which was perhaps more of an average. Perhaps a small number like you do worse and others much better so this should have been better explained at the outset, particularly as a personal forecast before a patient's response to treatment cannot be known for certain.

Can understand the way you feel about having lutetium 177, particularly in view of disappointing response to other treatments and loss of QOL.

Although present treatments have stopped working, remaining life expectancy could extend past three months albeit with less QOL.

Barry
User
Posted 20 Aug 2022 at 01:09
I am so sorry, Highland lass. Has he been referred to either the palliative care team, local hospice or Macmillan? These tend to be far better than oncology or the GP at balancing pain meds - it can be a delicate thing to reduce the pain without the person sleeping all the time. Also, have you been told about applying for PIP on the terminal illness route? The money will help with paying for practical things like night sitters, wheelchair, mobility aids, a proper medical grade bed / air mattress if he needs these things in the coming months. Also, what support do you have - it is important to take care of yourself while you are taking care of others around you?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Aug 2022 at 01:10

Originally Posted by: Online Community Member
Sorry the treatments have failed him Highland Lass.

Have they considered the old fashioned oestrogen based therapy? Sorry I can't remember what it's called..

Stilboestrol - definitely worth asking about

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

User
Posted 20 Aug 2022 at 08:32
So sorry to read this. It seems so aggressive with the treatments not working. Fills me with dread also :-(

All fingers crossed for you all x

User
Posted 20 Aug 2022 at 11:12

Sorry to hear this. I wish I could offer some practical advice, but I can't. All I can do is let you know that this forum is full of people who care about each other and we share the good and the bad times with each other, sometimes it makes us happy and sometimes sad.

Dave

User
Posted 20 Aug 2022 at 12:55

Most of us tend to do better Highland Lass, so I am always shocked when I read a story like yours.  We can never underestimate what this cancer can do.

Sending you and yours my best thoughts.  Just wish there was something we could do.

User
Posted 20 Aug 2022 at 13:42
So sorry to read this, I hope you are ok. Horrible disease, just horrible.
User
Posted 20 Aug 2022 at 18:15
So sorry, I hope the remaining time is as comfortable as possible

Bill

User
Posted 20 Aug 2022 at 18:34

Highland lass, sorry to hear your news, sending love and hugs.

Thanks Chris 

User
Posted 20 Aug 2022 at 18:45

So sorry to hear your news Highland lass and I am thinking of you both.

Regards

ANN

 

User
Posted 20 Aug 2022 at 18:50

So sorry to hear this devastating news like Dave said you are amongst friends on here we care about one another sending hugs  gaz

User
Posted 20 Aug 2022 at 19:38
Like everyone else on this thread so sorry to hear your news. It really does put this horrible disease into the headlights when you hear a story like your's. Too many lives lost to this awful cancer, Sending my thoughts and hugs.
User
Posted 20 Aug 2022 at 19:45
So sorry about your terrible news - sending hugs and hope that you get all the support and help
User
Posted 20 Aug 2022 at 20:35

So sad, as has been said, it’s such a shock to read this. Sending you virtual support and caring thoughts. 

User
Posted 20 Aug 2022 at 23:09

Hi Franci1

No they haven't,  but I will ask!

Thank you! 

User
Posted 20 Aug 2022 at 23:15

Hi Lynn

Yes,  we have all these things in place.  The OT at the hospice has been particularly helpful and a ramp has been fitted at front door,  wheelchair supplied etc. 

I'll ask about the drug you and Franci1 mention. 

Thanks! 

User
Posted 21 Aug 2022 at 16:46

Hi Highland Lass,

So sorry to hear your news update.Your family are in our thoughts and prayers .

Kind Regards

Norm

User
Posted 21 Aug 2022 at 17:06

So sorry to hear this news highland lass our thoughts are with you and your family xx

User
Posted 21 Aug 2022 at 17:37

So sorry to read this Highland Lass. My thoughts are with you and yours. 

Ido4

User
Posted 22 Aug 2022 at 17:44

So sorry to read this HL. Devastating is an understatement and we must never underestimate this horrific disease. I hope you both get all the support you need. Sending love and strength x

User
Posted 22 Aug 2022 at 19:17

Being myself diagnosed in May 2021 I am utterly shocked and so sad to read your post HL. Life is so precious and so unfair sometimes. Sending you both strength and prayers

Edited by member 22 Aug 2022 at 19:18  | Reason: Not specified

User
Posted 22 Aug 2022 at 23:41

So So sorry to read your news HL.  

Sending our love and strength to you both.  

Praying there is something that can be tried that will give more time and QOL. 

Elaine xx

User
Posted 23 Aug 2022 at 08:15
So sorry to read this news Highland lass. Our thoughts are with you both and your family xx

User
Posted 25 Aug 2022 at 05:57

Your journey from year 2 has been relentless and terrible for you both and your family. Utterly tragic and unfair. I’m so so sorry.

Your support and devotion to your husband is inspiring and no doubt your union has and continues to be an anchor in such sad and turbulent times. 

Sending our love and prayers.

Matthew 

User
Posted 26 Aug 2022 at 05:03

Highland Lass

so so sorry to hear your sad news. stay strong x

User
Posted 28 Aug 2022 at 07:21

So sorry to hear your awful news. I hope as a minimum that pain can be managed and that you're not overcome with regret of the things you didn't do... you were so busy trying to fight this disease with such might and that was always going to be your priority. 

 

Thank you for sharing your story, heartbreaking as it is, I have found comfort in many of your words and will heed your advice about making the most of the time we have left. 

Thinking of you both xx

User
Posted 01 Sep 2022 at 23:20

I am so very sorry to read your news Highland Lass. It never ceases to amaze me how every man’s journey is so unique in terms of reacting to therapies and treatments. 

The doctors do give a generalised average prognosis and each time we receive one of these it’s like jumping right back on the rollercoaster. We have been told more than once my OH has six months but thankfully has surpassed these estimates. The consultants can only go on averages and obviously some last longer and some not so long. 

I totally empathise with the shock and feelings you are both having to deal with and I can only send you love, thoughts and prayers 🙏 

Best wishes

SunnyJane xx 

User
Posted 07 Sep 2022 at 07:45
So sorry. Life is not fair.
User
Posted 08 Sep 2022 at 15:20
So sorry to hear your news. Words and prayers seem so inadequate at times like this but all so often are all we have to offer. Thinking of you both.
User
Posted 11 Sep 2022 at 09:16

So sorry to read this Highland Lass. This is a very cruel disease 😢 xx

Debbie xxx
User
Posted 12 Sep 2022 at 14:04

You don't say whether his tumour has been DNA-sequenced. If it has a BRCA mutation than a PARP inhibitor may help. Keep fighting.

User
Posted 13 Sep 2022 at 05:04

Hi there

Yes husband had testing for BRCA unfortunately he does not have that mutation.. 

We are still waiting on results of dna sequencing from the Beatson in Glasgow. Hoping to hear soon but time is not on our side. 

We have a glimmer of hope as enzalutimide was prescribed last week. Apparently a Canadian study reported 36 percent of men who had been treated previously with abiraterone did respond to enzalutimide. 

Thanks everyone for your kind wishes of support. Means a lot. X

 

 

 

 

 

User
Posted 13 Sep 2022 at 09:41

Hi Highland Lass,

Glad to hear there is some hope and fingers crossed you get some positive news soon.

Again, our journeys seem so similar. Dad found out the cancer has spread to his liver so is maybe ineligible for radium223. But in a warped twist, his consultant thinks the liver cancer may not be from the prostate! So just a waiting game now for BRCA and liver biopsy and results. As you say, time isn't on our side so the wait is agonising.

How is your husband doing in himself? Ate there any symptoms from the liver? Dad had weight loss only which prompted ct scan.

Thinking of you and hoping you get some good results from the enzolutamide x

 

User
Posted 13 Sep 2022 at 17:32

Hello Katie

My thoughts are with you, your dad and family. Hopefully there are treatment options still available and BRCA is positive. Certainly opens more options ie oliparib. Interestingly in the past week my husband has been feeling the best he's felt all year. He's up and walking, appetite returned and able to do some tasks independently again. Two months ago he had to use crutches and a wheelchair! So it's been great to see him mobile again. We think it's due to good pain management and dexamethasone steroids.

Husband's s liver lesions were only picked up on the pet scans done in London two wks ago. He had a CT scan middle of August and nothing picked up then. He hasn't had any symptoms though.

Wishing the very best for your dad and hope he's doing OK meantime.

X

User
Posted 12 Oct 2022 at 08:18
Sadly Donnyy, Highland Lass has now lost her husband to this disease, see the other thread where people are leaving their condolences.
 
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