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DJS - My Journey

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User
Posted 27 Sep 2019 at 09:11
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 16:28
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 17:09
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 20:17
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 07:47
Best of luck to all you Lu177 trailblazers. We are watching with the greatest of interest!
User
Posted 16 Oct 2019 at 08:48
Good news , good luck for the future that it keeps on working as well.

regards barbara x

User
Posted 16 Oct 2019 at 15:45

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

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

J.

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

J.

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"
 
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