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Spread to my liver and right lung

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User
Posted 29 Jan 2019 at 23:42

I was told last week by an A&E doctor that a CT Scan showed definite spread into my liver and  likely spread into my right lung (they found a suspect nodule there but said it was more than likely cancer). I also have prostate cancer in my lymphs, my bones and, recently, to my spine. The spine spread showed in the same A&E CT Scan.

I’m seeing my oncologist this week and wondered if anyone knew if Abiraterone, Enzalutamide or any other currently approved med for advanced prostate cancer might be something that could help.

I’m also very open to a trial if anyone has heard of one for my type of advanced prostate cancer. I figure at this point I have nothing to lose. If anyone can tell me I'm wrong about that, please do!

I’ve read on the Macmillan site that spread to the liver and lungs is rare - is that correct? If so, it's typical of the misbehaving sod of a cancer I've had right from the start, the bloody thing has never played by the rules.

Thanks for anything you can tell me,

Jim

 

User
Posted 30 Jan 2019 at 13:02
User
Posted 09 Apr 2020 at 14:54

Hi, apologies fir such a late reply to your post but I was looking for people who had lung involvement.  If you don’t mind me asking how long did you have Pca in your bones prior to profession to liver.

 

i really hope you are well

User
Posted 09 Apr 2020 at 15:46

Hi

Just to let you know, from reading Jim's blog, he has sadly passed away. 

Mrs MAS

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User
Posted 30 Jan 2019 at 01:01
Abi or Enza would be a good move if it turns out that you are castrate resistant but if I have read your update correctly, you are not there yet, having only been on a proper hormone treatment for a few weeks? Presumably, the onco believes that the spread happened while you were on bicalutimide which is why she has added Zoladex.

Lung is less common than bone - if the hospital suggests biopsying the area of concern in the lung that might give you a clearer treatment plan going forward. Was it definitely diagnosed as adenocarcinoma in the post-op pathology? Sometimes, men can start with one type but a different one appears later.

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

User
Posted 30 Jan 2019 at 11:43
Hi Lynn, thanks for your reply.

I’d say I have been on “proper” hormone therapy since March 2015. Bicalutamide 150mg is indeed a “proper” one from where I’m sitting. It’s a small tablet that has big effects so I cannot see how it would be anything other than a “proper” med. Certainly its effect on me has been far reaching, not least in that it’s helped to keep me going this long. I had Zoladex added in at the start of December. I am aware of many more hot sweats from that, but could not say for sure that there have yet been other changes resulting from the Zoladex compared to the Bicalutamide 150mg.

My PSA has long ceased to be an indication but the scans in the last week show neither the Zoladex nor the Bicalutamide are stopping the spread. I was not told of spread into my liver or lungs before the Zoladex, despite having had a Choline PET Scan around two weeks before starting it. That spread, and the spread into my spine and other new bone mets have happened since starting Zoladex. You might be right that’s it’s not yet castrate resistant but, to my mind, it’s behaving as though it is.

Yes, it was adépenocarcinome in the post op pathology in 2014. My oncologist wanted to try to get a biopsy of a lymph node back in December, partly to see if the cell structure had changed, but its location turned out to be too deep and too dangerous. Possibly the lung or liver mets will be more accessible.

Is there anyone who is in a similar position to me with personal experience of either Abiraterone or Enzalutamide? Did anything have an effect please?

Thanks to everyone for reading. My many meds make me feel and look fairly mellow but I’m going off my rocker inside and just writing all this down helps.

Cheers

Jim

User
Posted 30 Jan 2019 at 11:55
Hi Jim,

the difference is that bicalutimide simply disguises the testosterone, making it harder (but not impossible) for the cancer to feed. The problem is that eventually, the cancer learns to turn the bicalutimide itself into a food source. So when I said ‘proper’ HT, I meant a hormone that actually stops testosterone production in your body. At the minute, you can’t be considered castrate resistant because your body has only just stopped producing testosterone and the cancer may be feeding on the bical.

There have been some cases here of men having abi or enza before they are castrate resistant (I think it was a Stampede arm) so the onco might suggest it but I would hope they are going to get you off the bical asap to see what effect that has. You should also ask your onco about adding chemo now but s/he may want to know whether it is still adeno before doing any of this. If you have developed elements of small cell, for example, chemo is an absolute next step.

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

User
Posted 30 Jan 2019 at 12:13
I had Chemo in 2016, 6 cycles of Docetaxel. I know there Cabazitaxel but from what I know of that it may not be as effective as Abiraterone or Enzalutamide. I dare say I’ll find out from my oncologist in the next few hours.

User
Posted 30 Jan 2019 at 12:52
It depends on the type of PCa but generally, the research has all shown that chemo makes the HT / abi / enza more effective (except bical wouldn't be included as a hormone treatment in that data) for longer. HT doesn't work for some of the rare types like small cell, large cell or mucinous which is why chemo becomes the first line of defence.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jan 2019 at 13:02
User
Posted 30 Jan 2019 at 23:21
Thanks Roy,

That is very much appreciated!

Jim

User
Posted 30 Jan 2019 at 23:33
Just an update from my appointment with the oncologist on Wednesday afternoon.

I’m now off the daily Bicalutamide 150mg after 4 years and now on Enzalutamide - 160mg once a day. I’d heard how big the Enzalutamide pills are and they really are 4 massive pills of 40mg each and are an effort to swallow. They might work and, if they do, I’ll stay on them till they stop working. I had Zoladex for the first time in December and I’ll continue with that.

My liver mets did not show in a choline PET Scan done in November and since then there’s been extensive, aggressive spread. I saw the scan and it is covering quite a lot of my liver but the nets are not yet causing me significant problems, but I was told it’s the liver that is likely to be the main cause of symptoms.

If I have a good response to the new drug the oncologist estimates I have 1 to 2 years, more likely the lower end because of the extent and aggressiveness of my cancer. If I don’t respond then, she said, realistically less than 6 months.

She’s simultaneously contacting the drugs trial people at the Marsden to see if I’m suitable for any trials going on, so another possible avenue that might increase my lifespan.

We discussed a DNR Form, but I’ve not yet done that, although I will.

For now I intend carrying on as I have, which I think is realistic optimism. I’m no longer watching what I eat, I figure I might as well enjoy myself. In my head I feel amazingly calm and reckon those around me are suffering more from my news, especially my partner who I have been with for almost 35 years.

I have a fantastic support network, and the support is very noticeable.

Cheers

Jim

User
Posted 31 Jan 2019 at 00:46
Sorry to see the potential timeline although good news that there is a solid plan in place. If not already done so, now might be the time to apply for PIP - ask the nurse specialist to send you a DS1500 form or even better, help you fill it in. Hopefully you will significantly outlive the worst case scenario meaning that you win twice :-)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jan 2019 at 08:41

Really sorry to see this news Jim, your tretament path has been quite unusual, I don't know of any others who stayed on bicalutimide so long, it certainly was toxic to my OH when it was added when zoladex  alone failed. He started enza just over a week ago as a last ditch attempt, hard to say if its doing anything  yet, but we remain hopeful. Our oncologist explained to us that at this stage only the really aggressive cancer remains really, which seems right to me. Our ”journey” has been ongoing since end 2010, so a fair while. I really hope that Enza will be good for you, please let us know how you get on.

with love

Devonmaid xxx 

User
Posted 31 Jan 2019 at 09:21

Sorry to read this update Jim. I hope the Enzalutamide works and relieves your symptoms somewhat too.

I think you're right to try and enjoy things including eating what you like.

Lyn’s advice is good regarding PIP if you haven't already done so.

Ian

Ido4

User
Posted 31 Jan 2019 at 12:27

Hi Jim

this is a link i posted a while ago it is possible the Marsden are one of the hospitals testing it. it is similar to the lu177 and Ac225 , in that it is attached to the PSMA and delivered to the areas affected. The thorium whilst in the body decays into Actinium 225 so in theory giving the cancer a good kicking.

https://community.prostatecanceruk.org/posts/t17674-thorium-227-attached-to-a-PSMA-antibody

All the best

Roy

User
Posted 09 Apr 2020 at 14:54

Hi, apologies fir such a late reply to your post but I was looking for people who had lung involvement.  If you don’t mind me asking how long did you have Pca in your bones prior to profession to liver.

 

i really hope you are well

User
Posted 09 Apr 2020 at 15:46

Hi

Just to let you know, from reading Jim's blog, he has sadly passed away. 

Mrs MAS

User
Posted 10 Apr 2020 at 01:16
How devastating for his partner and family - sometimes this cancer is just so determined that no treatment works for very long.

Fly high, Jaypeeca

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

User
Posted 10 Apr 2020 at 10:18

I was in touch with Jim by email during his last few months. He lost his fight with this horrible disease 2/3/2019 sadly. His disease seemed particularly determined. His partner is devastated.

 

Ido4

 
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