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lutetium 177

User
Posted 27 Oct 2021 at 16:33

I am completing a course of ten infusions of Docetaxel chemotherapy.It has kept me reasonably well with a stable PSA(c100). The oncologist has raised a trial but I understand there is also cabazetaxel.I have also been reading about lutetium 177 privately.has anyone been in this situation?Any advice?

User
Posted 22 Nov 2021 at 18:18

When having chemotherapy treatment at Guys  hospital this week was told by oncologist  that L177 is likely to be available next year  there for those who may benefit on the NHS .

This is good news for those like me who by then will have exhausted other options.

Regards

Norm

Edited by member 02 Dec 2021 at 13:22  | Reason: Not specified

User
Posted 27 Oct 2021 at 16:33

I am completing a course of ten infusions of Docetaxel chemotherapy.It has kept me reasonably well with a stable PSA(c100). The oncologist has raised a trial but I understand there is also cabazetaxel.I have also been reading about lutetium 177 privately.has anyone been in this situation?Any advice?

User
Posted 30 Oct 2021 at 10:32

Originally Posted by: Online Community Member

I am completing a course of ten infusions of Docetaxel chemotherapy.It has kept me reasonably well with a stable PSA(c100). The oncologist has raised a trial but I understand there is also cabazetaxel.I have also been reading about lutetium 177 privately.has anyone been in this situation?Any advice?

Quote:


Hi Jo

My OH is currently undergoing L177 at the Wellington Hospital in London. But I think it is also being carried out at the Royal Marsden. My husband chose to do this as he found docetaxel chemo very debilitating and he is determined to keep working. He was offered Cabazitaxel as next treatment and if the L177 is not effective he will start that.

He had already had a second opinion in London at the outset of his diagnosis in late 2019 so we were referred back to this consultant and the process began. He had to undergo many scans to determine he was suitable to go ahead with the treatment and then he was lucky that his health insurance company agreed to pay for the first two cycles. Costs around £15,000 per cycle and you are likely to receive at 6 cycles. We are keeping our fingers and toes crossed that insurance company will continue to fund. 

He has had two cycles and we now wait to see the outcome of this. The best result would be that the treatment has reduced some of the cancer but as long as it is holding it where it is and there are no new tumours then that’s a positive. 

I will update on my thread as and when we get results. Good luck with your treatment 😊

best wishes

SunnyJane 

User
Posted 27 Oct 2021 at 21:55
Cabazitaxel will be held back in case you need it in the future - it depends how you respond to the docetaxel and how long for. Lutetium may be a possibility in the future but at the moment I think you can still only get it as part of a trial and they would need to test you first to be sure that you are PSMA+ - about 80-90% of men with prostate cancer are PSMA+

The trial your onco has mentioned may be your best next step - which trial is it?

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

User
Posted 27 Oct 2021 at 23:37

Can't see a Lutetium trial listed by Cancer Research UK where current trials are usually recorded but it seems it is  now being administered (rather than just the pre requisite PSMA scan)  at Wellington Hospital in London.   Previously we had a couple of men who had it abroad. You might like to plough your way through this thread. https://community.prostatecanceruk.org/posts/t27445-Lutetium-177-treatment

 

Edited by member 27 Oct 2021 at 23:53  | Reason: to highlight link

Barry
User
Posted 28 Oct 2021 at 10:08
I thought the Royal Marsden was doing it but I might have misunderstood. Also, I think I read that Stampede were looking at opening a new arm for earlier use of L177
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Jan 2022 at 15:05

Hi,

As I said on my previous posting Guys hospital hoping to offer L177 later this year but not yet NIce approved for NHS treatment generally.Perhaps others on this site can confirm this is still correct?

In the interim there may be trials going on that your other half may be eligible for ?Worth checking before paying out big bucks for private treatment.

Regards

Norm

Edited by member 09 Jan 2022 at 15:34  | Reason: typos

User
Posted 09 Jan 2022 at 22:46

The PSMAfore trial has 1 UK site listed (London)

https://www.clinicaltrials.gov/ct2/show/NCT04689828

May be worth asking if he fits the criteria?

UTV!

 

User
Posted 10 Jan 2022 at 01:42

Costs in Germany seem to have increased. If not accepted into the UK trial which seems to start this June and is not certain you will get the 177 Lut arm anyway, you could get a quote from the London Clinic. https://www.thelondonclinic.co.uk/treatments/lutetium-177-psma-for-advanced-prostate-cancer

 

Edited by member 10 Jan 2022 at 01:45  | Reason: to highlight link

Barry
User
Posted 10 Jan 2022 at 10:52

I have read it can make things worse and important all right scans are done

https://www.prostatecancer.news/2019/12/why-lutetium-177-psma-treatment.html?m=1

Does he have any genetic defect? Thinking parp inhibitor trials could be worth asking about too

 

Edited by member 10 Jan 2022 at 15:45  | Reason: Not specified

User
Posted 10 Jan 2022 at 22:30

I’m not an expert by any means  (zero experience of clinical trials in fact) but yes it looks like it’s randomised but with some form of crossover option. I think you’d have to ask your oncologist to interpret i’m afraid

Hope that helps

User
Posted 11 Jan 2022 at 06:28

Thank you for a lovely post 
Regards Barry

User
Posted 25 Mar 2022 at 07:34

Generally, cancer cells from the prostate express the prostate-specific membrane antigen (PSMA) protein on the cell surface. This membrane antigen serves as a target for certain peptides, so-called PSMA ligands (PSMA-DKFZ-617), which can be radiolabeled with therapeutic radioisotopes like the beta emitter Lu-177 (Lu-177-PSMA-DKFZ-617) or the alpha emitter Ac225 to deliver high dose targeted radiation to the tumour sites. This process is called radioligand therapy (RLT)

The therapeutic molecule is administered intravenously. It specifically seeks out and binds to the PSMA receptors on the tumor cells, and emits local radiation which leads to targeted irradiation of the malignant cells, leading to the cell death. Since the molecule only binds to the tumour cells and since the penetration of the radioactive particles in tissue is only a fraction of a millimeter, the normal tissue around the tumour cells is not damaged, hence this therapy is often called magic bullet therapy.

Various clinical studies show that RLT reduces tumor growth or substantially decreases tumor volume in the majority of cases. The therapy can also reduce pain and PSA values and improve the QOL.

Typically 3 - 4 doses of lu177 PSMA therapy are administered at intervals of 8 weeks. The injection itself takes about 10 minutes to administer. Dr hydrate the patient intravenously and the entire procedure can be done as a daycare short admission procedure.

Dr [Name removed by moderator] clinic sourced their non-carrier added lu177 from ITM Germany which is approved by both the European and Indian pharmacopia.

Lu177 PSMA therapy is very well tolerated. There may be some fatigue in the immediate post-infusion period. Some patients complain of some nausea and loss of appetite for the first week or so after the injection. There may be some lowering of the red blood cells after a few weeks but the lowering is usually not substantial to need any definite therapy. It usually reverses by itself. The principal adverse effect is xerostomia or dry mouth. Usually, the dry mouth increases with consecutive doses, and some of it is irreversible. There is usually about a 5- 10 % reduction in salivary gland function.

Lu 177 PSMA Therapy is effective in producing a reduction in the tumor sizes and consequently a reduction in PSA levels in about 75 - 80% of patients. The duration of response is usually about 1 year, however, there are a substantial number of patients who tend to remain in good response for longer.

Each dose of lu177 PSMA therapy costs roughly around 6500 USD in India. This includes the cost of hospitalization, medicine costs, consults, and the interim PSMA PET CT scans. etc. For more information, you can see my bio.

Regards Abhishek

Edited by moderator 28 Mar 2022 at 13:25  | Reason: Not specified

User
Posted 26 Mar 2022 at 12:32

Hello Abhishek

I would like to sincerely thank you. I contacted Fortis Medical Centre in India on Tuesday and we had a video call with Dr [Name removed by moderator] on Wednesday. She was extremely helpful and the consultation has given us more hope. We are also in discussions with the Royal Marsden Hospital but in essence trying to be proactive about what treatment next. Husband age 55 is now 18 months since diagnosis and on cabazitaxel, having already been on abiraterone and doxetacle (which failed). Worried his treatment options are running out faster than we expected so we really appreciate all the helpful advice and signposting from this site and people on the forum. 👍❤️. Thank you 

Edited by moderator 28 Mar 2022 at 13:24  | Reason: Not specified

User
Posted 27 Mar 2022 at 23:56

Hello Matthew2022 

Such heartfelt and kind words, thank you. 

I am so so sorry to hear you have this awful disease too. I hope you and your family are doing as well as you can and have a lot of support around you. In all honesty we were utterly grief-stricken for months and my heart felt broken. I couldn't work for months, I just needed to stop, be with OH and reset life priorities, which included me changing my job so we can spend much more time together. We both cried for a long time. My OH had no normal symptoms either. At the time he had developed a sore back (6 weeks before diagnosis).. His psa had reached over 900. Thankfully his first line of treatment (Abiraterone) was brilliant. It took about 3 months to adjust to the hot flushes and side effects but they soon settled, he even managed to get back to some cycling although a fraction of the distances he normly did. He still gets his monthly degralix injection, this will be lifelong. The side effects of this can be rough but usually doesn't last more than a day. They can give him headaches and cause sudden emotional periods. We've cracked it now though. He gets the injection around 6pm and goes to bed early so the worst of the effects occur when he is asleep. 

Unfortunately he is BRAC negative. If you get this test and are positive there are more treatments available. 

When Oh was diagnosed we were told his treatment path would be :Abiraterone, Doxetacle, Cabazitaxel, radium233 and possibly Lutetium 177 further down the line. 

Dr suggested Lutetium next. We discussed actinium 225 with her but we'd have to go to India for that and pay for it privately.

We should find out on Tuesday if the first dose of cabazitaxel is working. OH found the docetaxel side effects awful for about 10 days. Interestingly there's far less side effects with the cabazitaxel. 

We've also approached the Royal Marsden in London. We had a consultation with them 2 weeks ago. They are arranging  private testing on the dna of his tumour. He has an aggressive cancer so this is to see if there are any other mutations that other treatments may be available to treat. His biopsy sample will be sent to America for analysis. It may be a slim chance and long shot but there's no way we would pass this up. The Marsden is also referring him to the Beatson cancer Centre in Glasgow in the hope a clinical trial will become available.

I'm glad you are symptom free and hope that remains the case for a long time to come. Thinking of you and your family. I know it's very difficult to think of anything else right now but it will get better. 

Take care for now. X

 

 

 

 

 

 

Edited by moderator 28 Mar 2022 at 00:07  | Reason: Doctors name removed

User
Posted 28 Mar 2022 at 12:02

Indeed Matthew, we share your thoughts and sentiments. 18 months on and despite monthly blood tests and the array of appointments we still find it all surreal, as though we are talking about someone else. 

Sending thoughts and positivity your way. X

User
Posted 28 Mar 2022 at 13:20

Originally Posted by: Online Community Member
Our new reality is brutal because it has been labeled incurable and the average prognosis is awfully short.

Men diagnosed with bone mets often do very well for 10 years or more - and we have members on here who have lived fairly normal lives for in excess of 15 years. Granted, your chance of living to mid-70s is quite low but once you have your treatment plan in place, you will find your new normal. 'Terminal' is different to 'advanced'; it is only used to describe men for whom all treatments have failed and only treatment being continued is pain relief or treatment that improves quality of life - as a result, they are not expected to live for more than 6 months.

Considering your young age, one of the things that you will need to do is get financial advice about how best to use your pension pot. Also, do you have critical illness cover - policies will pay out on an advanced PCa diagnosis. 

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

User
Posted 28 Mar 2022 at 14:34

Thank you Lyne Eyre, I’ve read many of your thoughtful and knowledgeable posts to various members in recent weeks. 

I agree totally, it’s incorrect to use the term “terminal” for this stage. Men in my position have an incurable but treatable disease. Unlike many conditions, PC benefits from significant and progressive R&D which gives hope. 

I have already submitted a claim for a Serious Illness insurance policy I’ve been paying out for 18 years, so hopefully that’ll pay out in due course. I almost forgot I had it. Pension wise, you’re right, I will need to assess whether pulling out a tax free lump sum is the best option given my circumstances. I’ve started succession planning within my businesses, including cover arrangements if I don’t sail through treatments. I’m hoping I have at least a few good years of productivity (I’ll need 2-3) to prepare and ensure the best returns for my family. 

My wife and I find great comfort from those who survive and thrive for many years. I’m hoping my otherwise excellent health and fitness, having never smoked or drank alcohol even, will help me at least withstand the treatment regime and keep me stronger for longer.

We’re going to optimistically aim for 10 - 15 years and reevaluate every month, like every member of the advanced PC club. 

Show Most Thanked Posts
User
Posted 27 Oct 2021 at 21:55
Cabazitaxel will be held back in case you need it in the future - it depends how you respond to the docetaxel and how long for. Lutetium may be a possibility in the future but at the moment I think you can still only get it as part of a trial and they would need to test you first to be sure that you are PSMA+ - about 80-90% of men with prostate cancer are PSMA+

The trial your onco has mentioned may be your best next step - which trial is it?

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

User
Posted 27 Oct 2021 at 23:37

Can't see a Lutetium trial listed by Cancer Research UK where current trials are usually recorded but it seems it is  now being administered (rather than just the pre requisite PSMA scan)  at Wellington Hospital in London.   Previously we had a couple of men who had it abroad. You might like to plough your way through this thread. https://community.prostatecanceruk.org/posts/t27445-Lutetium-177-treatment

 

Edited by member 27 Oct 2021 at 23:53  | Reason: to highlight link

Barry
User
Posted 28 Oct 2021 at 10:08
I thought the Royal Marsden was doing it but I might have misunderstood. Also, I think I read that Stampede were looking at opening a new arm for earlier use of L177
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Oct 2021 at 10:32

Originally Posted by: Online Community Member

I am completing a course of ten infusions of Docetaxel chemotherapy.It has kept me reasonably well with a stable PSA(c100). The oncologist has raised a trial but I understand there is also cabazetaxel.I have also been reading about lutetium 177 privately.has anyone been in this situation?Any advice?

Quote:


Hi Jo

My OH is currently undergoing L177 at the Wellington Hospital in London. But I think it is also being carried out at the Royal Marsden. My husband chose to do this as he found docetaxel chemo very debilitating and he is determined to keep working. He was offered Cabazitaxel as next treatment and if the L177 is not effective he will start that.

He had already had a second opinion in London at the outset of his diagnosis in late 2019 so we were referred back to this consultant and the process began. He had to undergo many scans to determine he was suitable to go ahead with the treatment and then he was lucky that his health insurance company agreed to pay for the first two cycles. Costs around £15,000 per cycle and you are likely to receive at 6 cycles. We are keeping our fingers and toes crossed that insurance company will continue to fund. 

He has had two cycles and we now wait to see the outcome of this. The best result would be that the treatment has reduced some of the cancer but as long as it is holding it where it is and there are no new tumours then that’s a positive. 

I will update on my thread as and when we get results. Good luck with your treatment 😊

best wishes

SunnyJane 

User
Posted 22 Nov 2021 at 18:18

When having chemotherapy treatment at Guys  hospital this week was told by oncologist  that L177 is likely to be available next year  there for those who may benefit on the NHS .

This is good news for those like me who by then will have exhausted other options.

Regards

Norm

Edited by member 02 Dec 2021 at 13:22  | Reason: Not specified

User
Posted 09 Jan 2022 at 15:05

Hi,

As I said on my previous posting Guys hospital hoping to offer L177 later this year but not yet NIce approved for NHS treatment generally.Perhaps others on this site can confirm this is still correct?

In the interim there may be trials going on that your other half may be eligible for ?Worth checking before paying out big bucks for private treatment.

Regards

Norm

Edited by member 09 Jan 2022 at 15:34  | Reason: typos

User
Posted 09 Jan 2022 at 22:46

The PSMAfore trial has 1 UK site listed (London)

https://www.clinicaltrials.gov/ct2/show/NCT04689828

May be worth asking if he fits the criteria?

UTV!

 

User
Posted 10 Jan 2022 at 01:42

Costs in Germany seem to have increased. If not accepted into the UK trial which seems to start this June and is not certain you will get the 177 Lut arm anyway, you could get a quote from the London Clinic. https://www.thelondonclinic.co.uk/treatments/lutetium-177-psma-for-advanced-prostate-cancer

 

Edited by member 10 Jan 2022 at 01:45  | Reason: to highlight link

Barry
User
Posted 10 Jan 2022 at 09:57

Hi Jo have you found out anything about 177 Lu -PMSA trial, have emailed a few people over the weekend hoping for some response today.

User
Posted 10 Jan 2022 at 10:52

I have read it can make things worse and important all right scans are done

https://www.prostatecancer.news/2019/12/why-lutetium-177-psma-treatment.html?m=1

Does he have any genetic defect? Thinking parp inhibitor trials could be worth asking about too

 

Edited by member 10 Jan 2022 at 15:45  | Reason: Not specified

User
Posted 10 Jan 2022 at 12:16

Hi Everybody for your comments and looking into leads mentioned

Claret the trial browser you highlighted I don’t think you are assured of being on the 177 Lu -PMSA arm is that correct.

Kind Regards Jan

Edited by member 10 Jan 2022 at 16:02  | Reason: Request

User
Posted 10 Jan 2022 at 22:30

I’m not an expert by any means  (zero experience of clinical trials in fact) but yes it looks like it’s randomised but with some form of crossover option. I think you’d have to ask your oncologist to interpret i’m afraid

Hope that helps

User
Posted 11 Jan 2022 at 06:28

Thank you for a lovely post 
Regards Barry

User
Posted 25 Mar 2022 at 07:34

Generally, cancer cells from the prostate express the prostate-specific membrane antigen (PSMA) protein on the cell surface. This membrane antigen serves as a target for certain peptides, so-called PSMA ligands (PSMA-DKFZ-617), which can be radiolabeled with therapeutic radioisotopes like the beta emitter Lu-177 (Lu-177-PSMA-DKFZ-617) or the alpha emitter Ac225 to deliver high dose targeted radiation to the tumour sites. This process is called radioligand therapy (RLT)

The therapeutic molecule is administered intravenously. It specifically seeks out and binds to the PSMA receptors on the tumor cells, and emits local radiation which leads to targeted irradiation of the malignant cells, leading to the cell death. Since the molecule only binds to the tumour cells and since the penetration of the radioactive particles in tissue is only a fraction of a millimeter, the normal tissue around the tumour cells is not damaged, hence this therapy is often called magic bullet therapy.

Various clinical studies show that RLT reduces tumor growth or substantially decreases tumor volume in the majority of cases. The therapy can also reduce pain and PSA values and improve the QOL.

Typically 3 - 4 doses of lu177 PSMA therapy are administered at intervals of 8 weeks. The injection itself takes about 10 minutes to administer. Dr hydrate the patient intravenously and the entire procedure can be done as a daycare short admission procedure.

Dr [Name removed by moderator] clinic sourced their non-carrier added lu177 from ITM Germany which is approved by both the European and Indian pharmacopia.

Lu177 PSMA therapy is very well tolerated. There may be some fatigue in the immediate post-infusion period. Some patients complain of some nausea and loss of appetite for the first week or so after the injection. There may be some lowering of the red blood cells after a few weeks but the lowering is usually not substantial to need any definite therapy. It usually reverses by itself. The principal adverse effect is xerostomia or dry mouth. Usually, the dry mouth increases with consecutive doses, and some of it is irreversible. There is usually about a 5- 10 % reduction in salivary gland function.

Lu 177 PSMA Therapy is effective in producing a reduction in the tumor sizes and consequently a reduction in PSA levels in about 75 - 80% of patients. The duration of response is usually about 1 year, however, there are a substantial number of patients who tend to remain in good response for longer.

Each dose of lu177 PSMA therapy costs roughly around 6500 USD in India. This includes the cost of hospitalization, medicine costs, consults, and the interim PSMA PET CT scans. etc. For more information, you can see my bio.

Regards Abhishek

Edited by moderator 28 Mar 2022 at 13:25  | Reason: Not specified

User
Posted 25 Mar 2022 at 12:55
As with other forms of scans and treatments, it looks substantially cheaper to go to India for this. However, for anybody in the UK who meets the criteria, it could be worth contacting The Royal Marsden to ascertain whether they could be treated within the trial linked to in Claret's post. Although I can't see that the hospital is named, it is at the postal code given in the link, so I would expect it to be at the Sutton Branch of The Royal Marsden.
Barry
User
Posted 26 Mar 2022 at 12:32

Hello Abhishek

I would like to sincerely thank you. I contacted Fortis Medical Centre in India on Tuesday and we had a video call with Dr [Name removed by moderator] on Wednesday. She was extremely helpful and the consultation has given us more hope. We are also in discussions with the Royal Marsden Hospital but in essence trying to be proactive about what treatment next. Husband age 55 is now 18 months since diagnosis and on cabazitaxel, having already been on abiraterone and doxetacle (which failed). Worried his treatment options are running out faster than we expected so we really appreciate all the helpful advice and signposting from this site and people on the forum. 👍❤️. Thank you 

Edited by moderator 28 Mar 2022 at 13:24  | Reason: Not specified

User
Posted 27 Mar 2022 at 14:52

Hi highland lass - following your story with sadness and hope. How is your OH coping and have you made any progress in sourcing new possible treatment options? Your proactive approach is impressive and shows just how much you love your family. 

At 52 three weeks ago I was diagnosed with stage 4, Gleason 9, with two confirmed bone mets in spine and pubic bone. A third possible site on my right hip needs additional investigation.  So, I’m beginning to understand what you and your family have endured. Fortunately I have no symptoms at all. Like your husband, I have enjoyed excellent health until this bombshell. My treatment path will be shared on 30th March. 

I really hope you have some options given to you soon. 

Just felt I needed to reach out.

 

 

User
Posted 27 Mar 2022 at 23:56

Hello Matthew2022 

Such heartfelt and kind words, thank you. 

I am so so sorry to hear you have this awful disease too. I hope you and your family are doing as well as you can and have a lot of support around you. In all honesty we were utterly grief-stricken for months and my heart felt broken. I couldn't work for months, I just needed to stop, be with OH and reset life priorities, which included me changing my job so we can spend much more time together. We both cried for a long time. My OH had no normal symptoms either. At the time he had developed a sore back (6 weeks before diagnosis).. His psa had reached over 900. Thankfully his first line of treatment (Abiraterone) was brilliant. It took about 3 months to adjust to the hot flushes and side effects but they soon settled, he even managed to get back to some cycling although a fraction of the distances he normly did. He still gets his monthly degralix injection, this will be lifelong. The side effects of this can be rough but usually doesn't last more than a day. They can give him headaches and cause sudden emotional periods. We've cracked it now though. He gets the injection around 6pm and goes to bed early so the worst of the effects occur when he is asleep. 

Unfortunately he is BRAC negative. If you get this test and are positive there are more treatments available. 

When Oh was diagnosed we were told his treatment path would be :Abiraterone, Doxetacle, Cabazitaxel, radium233 and possibly Lutetium 177 further down the line. 

Dr suggested Lutetium next. We discussed actinium 225 with her but we'd have to go to India for that and pay for it privately.

We should find out on Tuesday if the first dose of cabazitaxel is working. OH found the docetaxel side effects awful for about 10 days. Interestingly there's far less side effects with the cabazitaxel. 

We've also approached the Royal Marsden in London. We had a consultation with them 2 weeks ago. They are arranging  private testing on the dna of his tumour. He has an aggressive cancer so this is to see if there are any other mutations that other treatments may be available to treat. His biopsy sample will be sent to America for analysis. It may be a slim chance and long shot but there's no way we would pass this up. The Marsden is also referring him to the Beatson cancer Centre in Glasgow in the hope a clinical trial will become available.

I'm glad you are symptom free and hope that remains the case for a long time to come. Thinking of you and your family. I know it's very difficult to think of anything else right now but it will get better. 

Take care for now. X

 

 

 

 

 

 

Edited by moderator 28 Mar 2022 at 00:07  | Reason: Doctors name removed

User
Posted 28 Mar 2022 at 11:03

Dear Highland Lass,

I’ve been sharing elements of your torrid experience with my wife of nearly 28 happy years, and we both just felt so sad. It’s both painful and comforting to find people around our age who are on a very similar path isn’t it. The exchange of facts, treatment choices and effects are valuable but also the emotional and personal aspects are meaningful perhaps now more than ever. It’s a huge shame the Abi treatment didn’t last longer than one great year.  

The first week following diagnosis was desperately hard for everyone. My darling wife, Samantha, breaks down in tears occasionally but is trying to focus on keeping busy. I work mostly from home and Samantha is a stay at home mum, so we’ve been blessed with time. 

I’m trying to be productive but finding it hard to concentrate. The worry, uncertainty and fear is ever present. Our new reality is brutal because it has been labeled incurable and the average prognosis is awfully short. Once a clock is introduced, everything changes. I haven’t, I don’t think, internalised fully what’s happening emotionally yet. Intellectually I’m beginning to understand the science but I’m probably too shellshocked to realise this is actually happening to me. With no symptoms whatsoever it’s difficult to conceive I’m seriously, even gravely sick. Worryingly, I haven’t shed a tear, I’m focusing on how my wife, children, extended family and even friends are coping. I realise that’s not healthy. 

Our journey with advanced PC in less than a month old but already we’re adjusting and learning.  I keep saying we’re in a better place than many (which I genuinely believe) but I also grieve deeply for what we will lose. If I am hurt and angry about anything it’s the comparatively young age that I and your OH have been diagnosed with a terminal and very unkind disease. It’s a shocker.

Please do keep your bio updated etc. There are plenty of good people in this forum who will want to support and be with you both. Let’s hope and pray the latest treatment is working and will keep doing its job for a long time to come. A clinical trial would be great too!

Please pass on our thoughts and best wishes to your husband.

Remember, you’re fulfilling a wonderful and life-defining role in the most heartbreaking of personal circumstances. I’m so grateful for my family and I know you too will be so cherished.

Take care x

 

User
Posted 28 Mar 2022 at 12:02

Indeed Matthew, we share your thoughts and sentiments. 18 months on and despite monthly blood tests and the array of appointments we still find it all surreal, as though we are talking about someone else. 

Sending thoughts and positivity your way. X

User
Posted 28 Mar 2022 at 13:20

Originally Posted by: Online Community Member
Our new reality is brutal because it has been labeled incurable and the average prognosis is awfully short.

Men diagnosed with bone mets often do very well for 10 years or more - and we have members on here who have lived fairly normal lives for in excess of 15 years. Granted, your chance of living to mid-70s is quite low but once you have your treatment plan in place, you will find your new normal. 'Terminal' is different to 'advanced'; it is only used to describe men for whom all treatments have failed and only treatment being continued is pain relief or treatment that improves quality of life - as a result, they are not expected to live for more than 6 months.

Considering your young age, one of the things that you will need to do is get financial advice about how best to use your pension pot. Also, do you have critical illness cover - policies will pay out on an advanced PCa diagnosis. 

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

User
Posted 28 Mar 2022 at 14:34

Thank you Lyne Eyre, I’ve read many of your thoughtful and knowledgeable posts to various members in recent weeks. 

I agree totally, it’s incorrect to use the term “terminal” for this stage. Men in my position have an incurable but treatable disease. Unlike many conditions, PC benefits from significant and progressive R&D which gives hope. 

I have already submitted a claim for a Serious Illness insurance policy I’ve been paying out for 18 years, so hopefully that’ll pay out in due course. I almost forgot I had it. Pension wise, you’re right, I will need to assess whether pulling out a tax free lump sum is the best option given my circumstances. I’ve started succession planning within my businesses, including cover arrangements if I don’t sail through treatments. I’m hoping I have at least a few good years of productivity (I’ll need 2-3) to prepare and ensure the best returns for my family. 

My wife and I find great comfort from those who survive and thrive for many years. I’m hoping my otherwise excellent health and fitness, having never smoked or drank alcohol even, will help me at least withstand the treatment regime and keep me stronger for longer.

We’re going to optimistically aim for 10 - 15 years and reevaluate every month, like every member of the advanced PC club. 

 
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