DJS - My Journey - - Page 3Advanced or metastatic cancer - Prostate Cancer UK Online Community

User

Posted 13 Jun 2019 at 15:11

So not the worst news Dave.........

Such a strong , brave , stoic approach still and I admire you. Best wishes with the Enzo

If life gives you lemons , then make lemonade

User

Posted 13 Jun 2019 at 16:30

You are a good example to us all, Dave.

A question if I may!

If the old mets have gone and the new ones are small, how come the PSA is up a lot?

User

Posted 13 Jun 2019 at 17:52

I know it’s all a bit mixed and we all hop from one result to another but, you have done so well. I hope Enzalutamide does well for you. You might remember my husband is taking it. The best few months he has had since Dx.

Fingers crossed for you Dave, hope it goes well.

User

Posted 13 Jun 2019 at 18:11

With regards the PSA which in my case always rises fairly rapidly when treatments end, even though I am a Gleeson 4+4 = 8, my Onco says that some of these mets are quite aggressive, maybe that is the reason for the quick rise in PSA?

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

User

Posted 08 Aug 2019 at 10:08

So early July was another treatment changeover date.

My PSA had reached 30.5 which was further proof that the Abiraterone treatment which had served me so well for 9 months was no longer working and it was time for a change and that change came in the form of Enzalutamide.

Four large Enzalutamide capsules were to be taken daily and on 10th July my new journey with Enzalutamide commenced.

My Onco did warn me that I may experience fatigue with this drug and as always he was absolutely correct. I made the mistake of taking the first dose at breakfast and by lunch time I was fast asleep on the couch. A change of strategy was needed. After a couple of phone calls I was advised to take the dose just before bedtime, which I dutifully did and still do and I can report that I now sleep like a baby. I must admit that there is more fatigue than with the Abiraterone but it is manageable.

The good news is that after a month my PSA has dropped down again and is now 22.9. So after nearly 4 years on this roller coaster my PSA is dropping again, but for how long who knows.

I do know that my next treatment , if and when Enzalutamide fails, has been decided and it will be the all new great hope for the future Lutetium 177, but let us hope that treatment is well down the line and the Enzalutamide does its job for some considerable time.

Onwards

Dave

Edited by member 08 Aug 2019 at 10:10 | Reason: Spelling error

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

User

Posted 08 Aug 2019 at 10:54

Well done Dave, another inspirational post for us fellow sufferers who are a bit behind you on the journey.

User

Posted 08 Aug 2019 at 12:09

Good PSA response Dave. Very positive post, thanks for updating.

All the best,

Ido4

User

Posted 08 Aug 2019 at 13:55

Good luck with it all Dave. I admire how well you deal with it all !

If life gives you lemons , then make lemonade

User

Posted 08 Aug 2019 at 15:02

Great stuff, does that mean Enzo (after abi) and lu177 are now on the NHS ? Or are you self funding?

User

Posted 08 Aug 2019 at 21:49

BUPA are funding my treatment.

Regards

Dave

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

User

Posted 09 Aug 2019 at 09:19

Good news about your PSA Dave. Long may it last. Also If/as/when you go onto Lu177 keep us all informed, and I ll do the same if I get accepted onto the trial in Bristol, as that could well be my next option following my 3rd round of chemo, (No 17), due on Monday 12th. By the way this 3rd round of chemo doesn’t seem to be hammering my PSA as much as I’d hoped for, however it is hammering my ALP so that can’t be bad can it.

Keep the Faith

User

Posted 09 Aug 2019 at 09:53

Yes, I will definitively compare notes Valleyboy and it is great to see you are moving in the right direction.

I understand from my Onco that apart from London and Windsor, it is Bristol and Southampton that are opening up centres for the LU 177 treatment as they have the expertise and facilities there to carry out the treatment

Regards

Dave

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

User

Posted 09 Aug 2019 at 18:53

Hi Dave

Thanks for the heads up about Southampton becoming a centre for the new treatment. As you could see on my profile I am 2 years on HT and last year had the usual 6 doses of Doxetaxel. My PSA was undetectable last month but it is reassuring to know about future treatments which may keep alive! Thanks.

Alan

User

Posted 05 Sep 2019 at 10:51

Well after only two months I can confirm that Enzalutamide has been a spectacular failure for me.

My PSA has gone up to 47.5 and my fatigue has increased significantly, so I will be quite relieved to come off this drug.

What next then ?

Arriving at the station is the new great hope for the future, Lutetium 177, which I will commence at the end of the month.

The journey continues

Regards

Dave

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

User

Posted 05 Sep 2019 at 11:01

Sorry to hear that Enzalutamide wasn’t helpful to you. I hope you have more luck with the next treatment, best wishes to you

Susie

User

Posted 05 Sep 2019 at 14:46

Hope the new treatment works for you, please keep us updated

User

Posted 05 Sep 2019 at 14:52

Gutted for you DLS although I think you already knew the research had shown that once abi fails, enzo is unlikely to be successful. LU177, on the other hand, seems to care not one jot about how you got on with abi / enza - keep on being a trailblazer :-)

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

User

Posted 05 Sep 2019 at 17:40

Hi Dave,

Bristol trial closed but Im still hoping to get on the (self funding), Lutetium bus. And I’m currently waiting for a date for a PSMA PET/CT scan to see if I’ve got the right receptors for this treatment.

As stated previously, Please keep us all updated re- your Lutetium journey, and Hopfully i ll be doing the same.

My current PSA is 1807, whilst my ALP is dropping nicely towards the normal range.

Keep the Faith

User

Posted 27 Sep 2019 at 08:31

As mentioned previously, Enzalutamide proved a spectacular failure for me and just to add insult to injury it departed from my life on 23/09/19 leaving me with a PSA of 214 which is the highest that I have ever had.

So it is now time for the so called "golden bullet" to finally make an appearance. Welcome to Lutetium 177, it has been a while coming, , so time to show if all the recent hype about this new drug really does live up to expectations.

I had my 1st infusion yesterday at the London Clinic and it went well.

I arrived at 11.00 and had my cannula installed and then it was a good 1 - 2 hours on a saline drip until the bag was approx 50% full. At that point the radioactive screens went up around me and the main man arrived in a radioactive shielded box. . It appeared to then be added to the saline drip by a contraption to ensure it was watered down. A bit like having whisky with water I suppose. So by 4.30 it was all done and I was ready to go home following a check with a gieger counter to ensure i was within reasonable limits. It all seemed incredibly easy

My next infusion is in 6-8 weeks time, so it will be interesting to see what my upcoming blood tests and scans show,

Keeping positive as always

Regards

Dave

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

User

Posted 27 Sep 2019 at 08:45

Hi Dai,

Is this Lutetium therapy on the NHS, part of a trial or privately funded? If so what is the cost of a course?

Here’s hoping it’s a success.

I watched one of those reality TV shows where an Arab woman flying in from Kuwait landed at JFK, New York. The whole airport went into panic mode when a Geiger counter alarm went off, and the customs guys assumed she was carrying a dirty radioactive bomb.

After much searching and scanning of her luggage and finding nowt, they eventually checked the lady for radioactivity, whereupon she told them she had had a bone scan the day before!

Best of luck.

Cheers, John.

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