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DJS - My Journey

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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

If life gives you lemons , then make lemonade

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

J.

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

J.

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 10:13
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 10:20

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 21:08
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 06:07
Thanks for the update, fingers crossed for a good scan result..
User
Posted 09 Sep 2020 at 08:40

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 09:48
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 11:29

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 11:30  | Reason: Not specified

User
Posted 14 Sep 2020 at 12:21

Keeping fingers crossed for a good outcome Dave

Good luck to everyone coping with the insidious big C

 
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