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DJS - My Journey

User
Posted 09 Aug 2019 at 10:19
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

J.

User
Posted 09 Aug 2019 at 10:53

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 19:53

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 11:51
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 12:01
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 15:46
Hope the new treatment works for you, please keep us updated
User
Posted 05 Sep 2019 at 15:52
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 18:40
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.

Ps

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

Keep the Faith

J.

User
Posted 27 Sep 2019 at 09:31
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 09:45
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.

User
Posted 27 Sep 2019 at 10:11
Good morning John,

All my treatments including this one are funded by BUPA, so I have no idea of the cost, although i believe it is not cheap.

I have a letter from the Clinic covering me for such eventualities with regards airport security, but fortunately I have no intention to fly in the foreseeable future.

Regards

Radioactive Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 Oct 2019 at 17:28
Well nearly 3 weeks have passed since the commencement of my Lutetium 177 treatment and my 1st blood test results are now in.

In 3 weeks my PSA has dropped from 214 to 20.9 thanks to Lutetium.

I also have very few side effects compared to other treatments.

The hype regarding this new treatment seems to be holding up so far in my particular case, but there is a long way still to go with 3 more infusions every 6 weeks still to come.

The proof will be in my future scans, so I am not getting carried away, but my Onco"s claim that the expectation is that the cancer will be pushed back 3 - 4 years if the Lutetium 177 treatment works well mey not be such a pipe dream

Onwards

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 Oct 2019 at 18:09
Wow , 3 to 4 years !!!! My fingers are crossed for you. Best wishes as ever

If life gives you lemons , then make lemonade

User
Posted 15 Oct 2019 at 21:17
Great news Dave and I’m hot on ur tail being one week since 1st treatment coming up this Thursday.

In my case 1st bloods due a week Thursday with another test approx 4 weeks post treatment.

Obviously with my PSA being so high I too am hoping for a massive drop but I won’t count my chickens till they hatch!

I’m also hoping for a decrease in tumour size when I get another PSMA PET/CT Scan approx 4/6 weeks after Lu 177 infusion 2.

Cant fault your Oncos expectation as 3-4 years gives us time for something else to be developed, cos without hope and optimism what have we got.

Wishing you every success for the future.

Keep us updated.

Keep the Faith

J.

User
Posted 16 Oct 2019 at 08:47
Best of luck to all you Lu177 trailblazers. We are watching with the greatest of interest!
User
Posted 16 Oct 2019 at 09:48
Good news , good luck for the future that it keeps on working as well.

regards barbara x

User
Posted 16 Oct 2019 at 16:45

This treatment looks very promising, and the positive results hopefully will mean it will not be too long before NICE approves it for all of us. The Royal Marsden offer it privately, the PSMA scan costs £3700, and the injections cost £8685 per session including overnight stay, and you would probably need 4-6 sessions.

Unfortunately, for me it is too much money so I really hope all of you continue to reap the benefits and pressure brought to bare to be added to the list of standard treatments!

Best regards

User
Posted 29 Oct 2019 at 19:37
So after a further 14 days, my latest blood results are now in. The Lutetium 177 continues to do it's work resulting in a further drop in PSA from 20.9 down to 7.3 in 2 weeks, other bloods are good.

My next Lutetium 177 infusion is on 20th November, so they have decided on an 8 week cycle in my case.

The side effects in my case are very small compared to previous treatments.Some tiiredness in late afternoon sometimes, which a good afternoon nap takes care of, other than that nothing

So all good and long may it continue

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 30 Oct 2019 at 00:16
Wow looking good!
User
Posted 30 Oct 2019 at 09:22
Great news a Dave. I’m on day 20 of cycle /1 and I’m still sweating like a pig at night !!Plus left eye still puffy whilst left ear also feels blocked??

Next bloods for me on the 7th, so let’s see what happens then?

Keep the Faith

J.

User
Posted 30 Oct 2019 at 13:35

Appreciate reading about your journey.  I hope Enza gives you many months.  My husband was on it for 3 months and taken off last week when his PSA went from 3.2 to 22.4.  Hope they will check your PSA often while you are on it.  His was not checked for 3 months assuming Enza would give him a long time.  Now we must wait 4 weeks for it to get out of his system before they will consider other treatment.  Best of luck on this!

Saint Paul

User
Posted 30 Oct 2019 at 15:04

Valleyboy,

When I have had sweats in  the past I have slept with a fan on full blast on me which seemed to help.

Not sure if that may help you?

Regards

Dave

 

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 30 Oct 2019 at 15:16

Saint Paul,

I am not on Enzalutamide, my current treatment is a new one called Lutetium 177.

But many thanks for your kind wishes

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 30 Oct 2019 at 16:21

Hi Dave,

Many thanks to you and the others who post regularly on here.For those recently joining the ranks of PC sufferers like me its a great resource.I was in a dark place in July when first told I had APC but the many postitve posts here have been reassuring about the road ahead .

Incidentially anyone who wants to know more about Lutetium 177 there are some informative stuff on You Tube.Best to look at the more recent stuff put on there in last 12 months or so but the substance seems to have been in use for the last 6 years for PC.There is also an very interesting video on there about how it is manufactured by the German suppliers in a high tech lab that looks like the inside of nuclear power station !

I  wish you well and will follow your treatment with much interest and trust its turns out to be  a bit of a game changer for you and for those of us that need such treatment options in the future.

Kind Regards

Norm

Edited by member 31 Oct 2019 at 11:05  | Reason: typos

 
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