DJS - My Journey - - Page 2Advanced or metastatic cancer - Prostate Cancer UK Online Community

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

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.

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

Keep the Faith

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

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

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

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

User

Posted 20 Nov 2019 at 14:29

Well today is the day. It has been 8 weeks since the last cycle of the all new Lutetium 177 treatment and today it is time for cycle no 2

So just to recap, since my last infusion of Lutetium 177 my PSA has dropped from 214 to 7.3. The mid cycle scan indicated that the Lutetium had positioned itself exactly where the previous PSMA Pet Scan had indicated the presence of Mets and micro mets. So the battle commenced and I felt absolutely no side effects whatsoever over the cycle period.

So today we went through the same procedure of checking bloods (all good), saline flush (1 hour) , Lutetium infusion (1 hour). Recovery to allow radiation to diminish (2 hours). Now on my way home.

The major change was that today I had a large contingent of medical practitioners from various London hospitals who wished to view the procedure. All part of applying to the relevant authorities for this procedure to be accepted by the NHS some day. Happy to help said I. They seemed impressed

Anyway, lets see where this treatment takes me. It certainly has got off to a flying start, but as the practitioners told me today, it does not work for everyone, as for some the cancer has spread too far and the Lutetium is overwhelmed by what it is being asked to do. For some the kidney and liver functions are not up to having this treatment and for some the cancer manages to hide so the Lutetium 177 can not find it.

Anyway, onwards

Regards

Dave

Edited by member 20 Nov 2019 at 14:33 | Reason: Spelling error

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

User

Posted 20 Nov 2019 at 15:57

Fingers crossed and willing this to work for you Dave. Thanks for your updates, they give such knowledge and hope for us all. Keep well. Susie x

User

Posted 20 Nov 2019 at 19:09

Well done Dave. Great results so far. Im off up to Windsor tmos for my 2nd Lutetium infusion, however my stats are far from as good as yours. So let’s Lutetium No 2 gives it a bit more of a kicking tmos. Eg whilst my PSA is down 700 it’s still very high for some at 1572. With my ALP holding up at 263.

Anyway as I won’t be back from Windsor till after midnight tmos. I ll update further on Friday.

Keep the Faith

User

Posted 20 Nov 2019 at 19:34

Keep the faith Valleyboy,

Here is hoping that the Lutetium does a good job tomorrow.

Regards

Dave

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

User

Posted 20 Nov 2019 at 22:26

Just a quick thought. I think my specialist in Windsor, (Dr Yong Du). Also works at the Royal Marsden? So have you come across him yet?

If so any info gratefully received?!😜

Keep the Faith

User

Posted 20 Nov 2019 at 22:40

No I do not know him

I have all my treatments at the London Clinic in central London not the Royal Marsden

Regards

Dave

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

User

Posted 06 Dec 2019 at 10:33

A quick update.

Following my 2nd Lutetium 177 treatment on the 20th November, I have had a further scan to ensure the Lutetium 177 is still there and working as it should in the locations where the cancer is located. It looks like a tick in the box for that one.

A further blood test has revealed that my PSA has gone up from 7 to 11, but nothing to worry about I am told.

Blood test shows good recovery so next treament booked for 8th January.

Reaction to treatment. Nothing. I am far fitter than i have been for some time. Long may this journey continue along its current path.

Regards

Dave

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

User

Posted 06 Dec 2019 at 11:09

Really excellent news Dave! What a result

User

Posted 06 Dec 2019 at 14:47

Well done Dave.

And as you say it really looks as if the Lutetium is working for you.

I too had my 2nd infusion on the 21st November, and whilst the side effects over the past two weeks have been much better than over the previous 6. Following my blood tests yesterday it was noted that whilst my ALP has gone down 179 to 181, my PSA has gone up 122 to 1744. Also my Hb is down to 85 so I ll have to keep an eye on that as if it drops to 80 or less by my next blood test in two weeks then I ll have to arrange another local blood transfusion. However as stated previously pain levels have also plateau’d out at a more than acceptable level, with my next PSMA/PET/CT scan booked for 20/12/19, which hopefully will show an improvement on my initial scan results from October.

Keep the Faith

User

Posted 07 Dec 2019 at 08:21

Fingers crossed for good results in your upcoming PSMA Pet Scan. That will be the measure of how effective the treatment is.

Your lessening of pain can only be a positive indicator I would think.

Keep the faith

Dave

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

User

Posted 16 Jan 2020 at 07:24

So the journey continues.

Last week I received the news that my PSA had jumped up from 11 to 47.9

Now my immediate reaction was that I am receiving Lutetium 177 treeatment my PSA is meant to continue to drop like a stone is it not?

Not necessarily so said my Onco, my ALP is dropping like a stone which is a major indicator of what is going on and a tumour flare is the likely reason for the PSA jump at this stage. Well we shall see, I am yet to be convinced, but the PSMA Pet Scan at the end of cycle 4 will be the decisive judge on this.

So yesterday I had my 3rd infusion of Lutetium 177 and it went as smoothly as the the previous 2. Arrived at the clinic at 11.00am and came out at 4.00pm

Side effects, nothing. It really is quite spooky. I am mindful that if you put a Geiger counter next to me it would be bleeping away like crazy and yet I feel entirely normal, no pain no sickness, maybe some tiredness, other than that nothing.

Anyway, onwards

Dave

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

User

Posted 28 Feb 2020 at 08:56

Very quick update.

Over 6 weeks since my last Lutetium 177 treatment and my blood tests show that my PSA has halved from over 40, which is what it was 6 weeks ago to 20 now and my ALP results continue to fall, now down to 122. Bear in mind my PSA was over 200 when my Lutetium 177 treatment started.

But the most remarkable thing is that the Litutium 177 treatment causes no side effects whatsoever now.

Next treatment is on 13th March.

Onwards

Regards

Dave

Edited by member 28 Feb 2020 at 09:01 | Reason: Spelling corrections

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

User

Posted 28 Feb 2020 at 09:42

Well done Dave. Good results. As you know my Lutetium treatment is still on hold. Due to low red and white blood cell counts. Platelet issues and the fact that whilst treatments one and two have managed to shrink 80% of my tumours, to some level, its also hammered my bone marrow.

Anyway just to add to that I had a fall last Saturday and broke my femur. So im currently in hospital following an operation to have a bar nailed” Into my leg screwed in at both knee and hip joint. Also extensive brusing to shoulders and back following the fall.

I’ve kept all my medical staff inc. lead oncology consultant Prof. Bahl in Bristol. GP. Oncology consultant in local hospital, Radiotherapy consultant in Singleton Hospital. Private treatment centre in Windsor, in the loop as to current situation and all agree that currently my recovery plan is

1–get mobile again ASAP and concentrate on leg break whilst avoiding infections.

2-keep monitoring bloods and try to recover to as near normal levels so Lutetium cycles 2and 3 may be undertaken as/ if/when deemed suitable.

3- monitor and treat advanced incurable PCa as per current regime.

Happy days

Keep the Faith

User

Posted 28 Feb 2020 at 09:46

Oh Valleyboy, you are going through the mill presently.

But your strategy going forward looks sound.

Get yourself better and jump back on the Lutetium bus when you are ready.

The treatment certainly seems to work for both of us.

My very best wishes

Dave

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

User

Posted 29 Feb 2020 at 13:53

Very glad to read your positive results! Every day is new grace :)

User

Posted 29 Feb 2020 at 13:58

Praying for positive results and so sorry to hear about your femur. God bless you!

User

Posted 29 Feb 2020 at 22:25

Great news Dave, keep up the good work.

regards barbara x

User

Posted 29 Feb 2020 at 22:37

Really pleased to hear that the 177 Lutetium treatment is going so well for you Dave, and without those awful side effects.

Long may it continue.

With very best wishes.

Ange

User

Posted 06 May 2020 at 11:13

It's been quite a while since I last posted, so a quick update is in order.

I had my 4th treatment of Lutetium 177 on 13/03/20 and my PSA is holding steady around the 20 mark, all other bloods are good.

My next (5th) treatment is due on 14th May.

I have absolutely no side effects with this treatment. It really is quite something in that regard, no aches and pains, nothing..

I will undertake a PSMA PET Scan on conclusion of the 6th cycle, which should be interesting

Onwards

Dave

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

User

Posted 06 May 2020 at 11:20

I was so pleased to read your update, Dave. Not just for you but also for those of us who will probably be coming behind you!! Continue to sort out the wrinkles in the treatment for us and continue to keep us in the loop please!

User

Posted 08 Sep 2020 at 22:08

I have been reminded that I have not posted an update for some time, so hear goes.

I had my 6th and final Lutetium 177 treatment on 22nd July.

I am due to meet my Onco mid September.

Following that meeting i am expecting to have another PSMA Pet Scan.

At that point we will see how successful the treatment has been.

I still have no pain whatsoever so i am pretty confident that the treatment has had a positive effect.

How much effect, no doubt the scan will let us know.

It has now been 5 years since diagnosis

All good

Regards

Dave

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

User

Posted 09 Sep 2020 at 07:07

Thanks for the update, fingers crossed for a good scan result..

User

Posted 09 Sep 2020 at 09:40

I have been thinking of you recently Dave as you hadn’t posted for a while. Glad to hear you are pain free. Thanks for update.

Ido4

User

Posted 09 Sep 2020 at 10:48

Good to see your update Dave - keep on keeping well 👍

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

User

Posted 12 Sep 2020 at 12:29

Hi Dave

thanks for keeping us updated. I am pleased to see you have tolerated the treatment well, with little side affects, and fingers crossed for a good outcome later this month.

I have noticed that in Australia they are trialing a more patient specific approach in which they adjust the dosage based on the results of the scans taken during treatment, which sounds logical.

All the best

Roy

Edited by member 12 Sep 2020 at 12:30 | Reason: Not specified

User

Posted 14 Sep 2020 at 13:21

Keeping fingers crossed for a good outcome Dave

Good luck to everyone coping with the insidious big C

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