From docetaxel to ??? - the interregnum - - Page 2Advanced or metastatic cancer

User

Posted 05 Sep 2017 at 18:00

Mrs_C and I saw the Onco today. The PCa in the left shoulder has progressed and is the reason for the increasing pain and incapacity of the shoulder. The other bone metastases are unchanged. There is spread to one lymph node in my left armpit which is evidenced by swelling in that area. My Onco hopes that the rising PSA is down to the shoulder and that alone. She has ordered RT to the shoulder, 5 sessions over 2 weeks because my lungs still show some inflammation from the pneumonia and she doesn't want to risk damaging them. She confirmed that the scans did not show any honeycombing of the bones and thus she felt there was no risk of bones breaking. A further PSA test is to be done between 3.5 and 4 weeks after the last shot of RT and we see her again on 31 October 2017. So the, maybe optimistic, hope is:

1. The RT stabilises and maybe lessens the shoulder pain.

2. Zapping the PCa in the shoulder causes the PSA to fall back.

She is also actively considering Radium 223 treatment.

Edited by member 19 Sep 2017 at 17:01 | Reason: Not specified

User

Posted 05 Sep 2017 at 22:50

Sounds like a good plan. I think localised RT for pain relief can work well, hope this does for your shoulder. Hope you get some improvement!

User

Posted 05 Sep 2017 at 23:03

Hi David

All the very best..

Gordon - Devon

User

Posted 05 Sep 2017 at 23:11

Hi David,

Or in Welsh DAVID , I can't praise Raduim 223 highly enough it has worked so well for Trevor it has been shamazing and he has a similar problem in his shoulder and has kept the ALP on a level since Christmas.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Sep 2017 at 23:25

Fingers crossed for you Col x

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

User

Posted 05 Sep 2017 at 23:36

Sending you best wishes and hope it works. My husband so far is finding HT and Chemo is keeping his pain levels right down but for how long. So watching your posts with interest.

User

Posted 06 Sep 2017 at 19:06

Originally Posted by: Online Community Member

Mrs_C and I saw the Onco today. The PCa in the left shoulder has progressed and is the reason for the increasing pain and incapacity of the shoulder. The other bone metastases are unchanged. My Onco hopes that the rising PSA is down to the shoulder and that alone. She has ordered RT to the shoulder, 5 sessions over 2 weeks because my lungs still show some inflammation from the pneumonia and she doesn't want to risk damaging them. She confirmed that the scans did not show any honeycombing of the bones and thus she felt there was no risk of bones breaking. A further PSA test is to be done between 3.5 and 4 weeks after the last shot of RT and we see her again on 31 October 2017. So the, maybe optimistic, hope is:

1. The RT stabilises and maybe lessens the shoulder pain.

2. Zapping the PCa in the shoulder causes the PSA to fall back.

She is also actively considering Radium 223 treatment.

David,

I too saw my Oncologist yesterday, but had a different outcome to yourself.

He started by commenting on how well I was looking which was countered by my commenting that I was not suffering really at all.

He then presented me with the news that although my testosterone was still low, my PSA had now jumped to 35.9, so he needs to know what is going on before our next plan of action. Well *!*! said I

So now, for the 3rd time, I am going to experience the delights of the super duper PSMA PET / Prostate Scanner. This is happening this Wednesday then I see him a week on Tuesday to find out the plan going forward.

The annoying thing is that he knows how well I react to Chemotherapy, so that is definitely one of the tricks up his sleeve still.

So much for our long and fruitful Chemo holiday David

All the very best wishes to you David and long may our journey continue.

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 06 Sep 2017 at 20:25

David,

I am a recent member of this "club". I just wanted to say that your posts regarding your journey have been so very useful and inspirational to me as I start my own battles. The advice you have laid out helped to prepare me for the Chemo (although I forgot the pineapple on the day and my taste buds have paid the price!).
I wish you all the very best and although the journey continues I hope that it is a long and manageable one for you and yours!

User

Posted 19 Sep 2017 at 17:03

Things proceed at quite a pace.

I have now had 4 of the 5 RT shots with the last one tomorrow. So far, I would say there has been a marginal reduction in pain. Next bloods will be on 18 October followed by the Onco consultation on 31 October when we will see whether her optimistic hopes for the RT have been realised.

An appointment has been made with a Nuclear Medicine consultant at Derriford hospital in Plymouth for next Monday 25 September to discuss my suitability for and the advantages and disadvantages of Radium 223.

User

Posted 19 Sep 2017 at 23:19

I hope they come up with an acceptable treatment path for you David

All the best, Arthur

User

Posted 20 Sep 2017 at 21:53

David ,

Trevor did brilliantly on the Raduim 223 and is still having good relults 6?months on . It helped with pain and mobility I have only got good things to say about it .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 21 Sep 2017 at 11:15

David,

Met with my Onco on Tuesday for the results of my PSMA PET Scan.

This scanner really does pick up every pin prick.

So, I have couple of spots (I mean less than 1mm) in areas not wanted and my bone mets and lung mets have increased during my wonderful 5 month Chemo holiday.

So that holiday is now at an abrupt end and I am looking forward to a further 4 - 6 cycles of Docetaxel commencing on Wednesday. Onco may change it to Caza depending how I go

I have that feeling when I was in the queue, (many, many years ago) for the Space Mountain ride at Disneyland Paris.

Bring it on I say!

The journey continues.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 21 Sep 2017 at 11:25

Dave,

Sorry to hear that but I can see why your Onco wants to put you on chemo again whilst you are asymptomatic and still physically strong enough to deal with it. Abbi or Enzo can be kept for a later date as can Radium 223.

User

Posted 21 Sep 2017 at 15:18

David,

Those were his exact words

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 21 Sep 2017 at 16:50

Dave

Whatever treatment you get I Hope it all works out for you, as your "strap line" has been a source of inspiration for me since February.

All the best----J.

User

Posted 21 Sep 2017 at 16:54

David

I too echo everyone's thoughts and hope that any new treatment regime brings you some additional relief.

All the best

User

Posted 21 Sep 2017 at 19:13

Dave, I echo the last few replies. Hope you get positive results from the next phase of treatment. Best wishes, Ian.

Ido4

User

Posted 25 Sep 2017 at 18:51

So I now know the ??? in the title of this thread will become Radium 223. Therefore, I will shortly create a new thread where I will document the highs and lows of Radium 223. The first infusion of a maximum of six will be on 10/10/17. Thereafter 4 weekly with bloods at the end of the second week.

User

Posted 25 Sep 2017 at 19:08

Colin

Just a quick word,

good luck

Barry

User

Posted 25 Sep 2017 at 19:31

Originally Posted by: Online Community Member

David,

Met with my Onco on Tuesday for the results of my PSMA PET Scan.

This scanner really does pick up every pin prick.

So, I have couple of spots (I mean less than 1mm) in areas not wanted and my bone mets and lung mets have increased during my wonderful 5 month Chemo holiday.

So that holiday is now at an abrupt end and I am looking forward to a further 4 - 6 cycles of Docetaxel commencing on Wednesday. Onco may change it to Caza depending how I go

I have that feeling when I was in the queue, (many, many years ago) for the Space Mountain ride at Disneyland Paris.

Bring it on I say!

The journey continues.

Regards

Dave

Good luck Dave

Barry

User

Posted 26 Sep 2017 at 19:36

So Mr D it's Raduim 223,

I have only got good words to say about it and Trevor is living proof of that .

They give you a really nice leaflet of dos and don't s the treatment is over in minutes so that's no Biggie .

Trevor felt a bit sick after his first treatment but after that it was a breeze .

The below advice is only for about a week after that you can piddle on who you like , but always refer to your leaflet . 🤗

Yes you will be radioactive for awhile so .

No kissing or weeing on pregnant women ( hopefully that bit will be easy) 😄

Any dribbles on the toilet seet need to be cleaned asap ( all normal rituals for any man living in my house) 😂

Separate washing of clothes

Oh and thank you so much for your lamb recipe ( I love it and Trevor wants me to try it ) I will report back on how much he has enjoyed it because unfortunately that's the the other thing with Raduim 223 , you can't eat lamb for at least 6 months after the end of treatment. 😘

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 26 Sep 2017 at 19:43

Originally Posted by: Online Community Member

unfortunately that's the the other thing with Raduim 223 , you can't eat lamb for at least 6 months after the end of treatment. 😘

Oooooooo, you little fibber you.

User

Posted 27 Sep 2017 at 21:44

Hi Col

John has had two infusions of Radium 223. It's easy enough to manage the toilet habits for the few days afterwards, even with an SPC. He has definitely been unwell in the first week afterwards, and lots of tummy troubles, which is fairly common. He has had some increase in pain but has not needed to take much extra painkillers, but then he's so stoic his pain needs to be about nine before he'll take being other than paracetamol. PSA is shooting up (42) but nothing is yet being done about that as they focus on other bloods, such as ALP and another specific reading I'd never previously heard of. Good luck, it has great results apparently, so fingers crossed for those of us on this bit of the journey.

Love Devonmaid

User

Posted 28 Sep 2017 at 08:58

Thanks DM.

It does sometimes seem that there are as many opinions about a specific treatment as there are consultants.

For the record here's what the Nuclear Medicine Consultant (who I really liked, always good) at Plymouth said.

I said I'd read that I should stop taking vitamin D whilst on Radium 223. He said I was the second patient he had seen that had said that. However, he didn't believe there was any problem with continuing with vitamin D.

I asked that apart from the way I felt (always a very important factor as many others have said on here), how would we know whether the Radium 223 was working.

I said I'd read that Radium 223 had little effect on PSA but has a significant effect on ALPs. He said that for Mr Average they normally see PSA drop for the first four Radium 223 infusions and then rise from infusion five. He also said that for Mr Average they normally see ALPs drop through all the six infusions.

User

Posted 28 Sep 2017 at 19:27

Who is Mr Average that's what I would want to know and is he partial to lamb .

Seriously Trevor didn't really have any drops in PSA which was to be expected the Raduim only targets the bones but the cancer in the bones also excretes some PSA because it is still prostate cancer .

Dm is right other bloods are more important especially ALP which is the bone marker and the same with the first 2 weeks on the first treatment where a bit rough but after that Trevor found it plain sailing .

He said the Geiger counter after each treatment was a bit worrying but as normal when you get used to it it's ok .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Oct 2017 at 19:00

This thread is now closed. A new one has been started:

http://community.prostatecanceruk.org/posts/t13243-Radium-223---the-highs-and-the-lows#post169820

Edited by member 03 Oct 2017 at 19:01 | Reason: Not specified

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