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Questions on Mitoxantrone & Lutetium

User
Posted 09 Dec 2022 at 14:07

Hi all,

 

I’m looking for some advice about my Dad who has advanced Prostate cancer.  Apologies if I’ve got some of the details wrong.

 

In terms of background, he was diagnosed with non-operable locally advanced prostate cancer just under 6 years and is now 75 and it is now advanced and terminal.

 

He has previously had radiation therapy and all the available forms of hormone therapy (abiraterone worked for a while, but sadly Enzalutamide wasn’t effective).  He has also previously had two rounds of Docetaxel (they tried him on Cabazitaxel the second time but he had an adverse reaction this so they went with more Docetaxel).  The first course was shortly after diagnosis and worked well – keeping his PSA down for a long time (in combination with hormone therapy).  The other (around a year ago) worked well when he was on it but his PSA started to rise again almost as soon as it was over.    

 

Earlier this year he volunteered for a clinical trial testing a new form of medication (and was getting regular tests/scans) and that seemed to be working for a couple of months (his PSA went down a bit) but he's now off the trial.

 

This was as his PSA has now climbed rapidly to over 3000 and the scans showed significant spread/growth within his lymph nodes.  The disease is also in his bones, but there seemed to be less concern about this by the medical staff (apparently the growth there is stable) in comparison to the growth within his lymph nodes. 

 

He consequently has pretty much exhausted his treatment options, although his consultant has suggested a third round of chemotherapy (using mitoxantrone) may be an option.  Understandably, medical staff have been pretty vague about how long he might have left – other than to say the evidence suggested months not years. 

 

He isn't in any pain, but has been more fatigued in the last few months (taking to his bed more frequently) and can’t walk or stand for as long as he used to, but he still gets out and about. does some gardening and has a high quality of life.

 

I had put a lot of hope that the trial would be a game changer, but recognise that I should have been more realistic.  I realise that many men with cancer don’t survive as long as he has already, but I’m still finding it very hard to come to terms with the fact that this will very likely be his last Christmas. 

 

I was consequently wondering if anyone might be able to offer advice about the following questions:

 

1) Has anyone undergone (or know people who have undergone) treatment with mitoxantrone as a third line chemotherapy option?  If so, did it provide a significant reduction in PSA/growth and were the side effects manageable?  I ask, as it is my understanding that repeated courses of chemotherapy tend to have diminishing returns.  My Dad seems to be undecided about whether to go for it as it is unclear about how much benefit it will give him (in terms of potential longer survival versus how much the side effects would detract from his time left. 

 

2) Does anyone know of the current status of the approval for Lutetium (177Lu) on the NHS (he’s in Scotland if that makes a difference).  I’ve looked online and I’m a bit confused as to what is happening.  I recognise though that even if it gets approval, it will probably be too late for him.

 

3) At what point does it tend to be clear that the end is nearing in patients with cancer of this type (i.e. with significant lymph node involvement) – i.e. how much warning do you tend to have that things are going downhill?

User
Posted 09 Dec 2022 at 18:42
Hi.

1. I can't think of any member here who has posted about having mitox after docetaxel and / or cabaz so can't comment on its effectiveness although I think you already understand that it isn't going to produce a miracle? The risks and side effects are very similar to docetaxel - the hope is that it will improve his quality of life a little by reducing side effects of the lymph mets and may also slow progression. The difficulty with palliative treatment is recognising when the treatment is reducing QoL rather than improving it. I think if it was my dad, I would be saying "well, why not start it and you can always stop after one or two sessions if the side effects are horrible."

2. Lut 177 was available in Scotland on a pre-approval funding stream - oncologists had to submit a request explaining why they wanted it for their patient. It looks like that is now not available and Lut has not been approved / licensed yet - there is some kind of patient review in January 2023 and no predicted date for full license. If you were interested in paying for it, the starting point would be to request a PSMA scan to see whether he is PSMA responsive.

3. It varies a lot depending on where the mets are. Some men with bone mets experience increasing levels of pain requiring more and more pain relief - hard hitting stuff. For these men, it is sometimes difficult to get the balance right between reducing pain and not just knocking the patient unconscious 24 hours a day but as the end stage approaches, the pain relief doses get higher and the man sleeps more and more until they slip away. For men with lymph mets, the presenting problem can be oedema which limits mobility and eventually leads to organ failure - not usually highly painful but rather increasingly weak and immobile. Some men just lose their appetite and stop eating - nature's way of ensuring as painless a death as possible. For some men, the end can be swift and out-of-the-blue - a urinary infection or pneumonia, for example. My father in law died within 24 hours of it being realised that his cancer had become advanced - the oedema was very sudden and significant, making his heart stop. As your dad is pottering round and living his best life, I think you will notice when the end stage arrives.

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

User
Posted 11 Dec 2022 at 17:07

Thank you so much for your reply - it genuinely has really helped get things a bit clearer in my head.  

His next appointment is in early January, so I'm looking forward to spending Christmas with him as a family (we have a four month old baby) and on making happy memories together rather than focussing on treatment options.  

 
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