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DJS - My Journey

User
Posted 18 Apr 2018 at 10:01
Good morning,

Rather than buck in to other peoples threads, akin to a rude uncle at someones party, i have decided to start my own thread where i can update my journey.

It is all pretty well mapped out in my profile, but to precis, i discoovered I had PC in Sept 2015 and now some 2.5 years later it is advanced / metastatic and being treated, although I am in the incurable pot.

I have just completed my 16th (yes 16) docetaxel infusion and I'm feeling ok ish.

My PSA is now down to 4.2 and my next chemo holiday starts today.

Coming up in the next couple of weeks is another PSMA PET scan to enable my oncologist to track all those little micro mets out there that no other scanner can detect (according to him) and plot the next stage of my journey.

How long do I have left. No idea, but I am enjoying life more than ever. There is something of a serenity to it all.

Regards

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 18 Apr 2018 at 10:01
Good morning,

Rather than buck in to other peoples threads, akin to a rude uncle at someones party, i have decided to start my own thread where i can update my journey.

It is all pretty well mapped out in my profile, but to precis, i discoovered I had PC in Sept 2015 and now some 2.5 years later it is advanced / metastatic and being treated, although I am in the incurable pot.

I have just completed my 16th (yes 16) docetaxel infusion and I'm feeling ok ish.

My PSA is now down to 4.2 and my next chemo holiday starts today.

Coming up in the next couple of weeks is another PSMA PET scan to enable my oncologist to track all those little micro mets out there that no other scanner can detect (according to him) and plot the next stage of my journey.

How long do I have left. No idea, but I am enjoying life more than ever. There is something of a serenity to it all.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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 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 19 Sep 2018 at 20:48

Hi Dave,

I just read your story and I have so much admiration for your attitude . Pleased to read about your recent good results and long may it continue

Best Wishes

Paul 

User
Posted 27 Nov 2018 at 18:18
Just back from my latest visit to the Onco to review my Abirateron / Zytiga journey and the results are good.

PSA has dropped to 1.3 with all other bloods good.

My energy levels are nearly back to normal and I have no side effects from the drugs I am on

So the "wonder drug" Abirateron is working well, and no doubt the cancer is desperately trying to work out what to do next

Hoping Abiraterone is effective for a long time to come

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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 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 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 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 18 Apr 2018 at 13:43
Thanks for the update Dave. I am amazed at you tolerating 16 sessions of docetaxel.

Good luck with the PSMA PET scan and hopefully it shows the docetaxel has done its job.

Best wishes, Ian.

Ido4

User
Posted 18 Apr 2018 at 16:43
Susie W,

Yes I have followed how your OH is doing. I do hope he manages to progress with the Chemo. My Oncologist told me yesterday that for over 70% of patients Chemotherapy works. In my case I make sure to take it easy during the cycle periods. I take my temperature twice a day and during days 7 to 10 never mix with anyone to avoid infections. Other than that I think luck plays a part.

All the very best wishes to you and your OH.

Regards

Dave

Edited by member 18 Apr 2018 at 16:49  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 17 May 2018 at 19:17
So I had another one of wonderful scans last week which confirmed that my mets to the bones, adrenal gland and lungs had all reduced and in some cases disappeared and there was no further spread of those pesky micro mets, so all good.

Unfortunately my PSA has jumped up as usual following completion of Chemo so the plan going forward is to give me a further 4 cycles of Docetaxel which started yesterday and once that is completed straight on to Zytiga.

My Onco said it was slightly the wrong way around in procedure, but hopefully the less intensive treatment will give me a break and work.

Onwards

Regards

Dave

Edited by member 17 May 2018 at 19:19  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 17 May 2018 at 20:52
That’s positive news about the mets Dave. Hope things continue to go well for you.

Ian.

Ido4

User
Posted 06 Jun 2018 at 09:59

That’s good that the blood numbers are moving in the right direction Dave.

Wishing you all the best,

Ian

Ido4

User
Posted 18 Jul 2018 at 14:46

Hi Dave,

wow, you’ve done incredibly well! Hope the new part of the journey goes well for you and The Docetaxel effects wear off soon.

regards Susie

User
Posted 18 Jul 2018 at 15:07
Best wishes Dave , all looking good for you if that is the right word ? Long may you battle on.

If life gives you lemons , then make lemonade

User
Posted 18 Jul 2018 at 22:17

20 cycles of docetaxel is amazing Dave. Your matter of fact way of dealing with things is inspirational. Lang may yer lum reek! Scottish for I hope you are still here for a long time to come.

Ido4

Ido4

User
Posted 18 Sep 2018 at 23:49
Hi Dave, pleased to hear that abiraterone is beginning to do the job. More than that, your energy levels are improving. I’ve said before, how you got through the Docetaxel I do not know. My poor husband was wiped out with 6.

Hope things continue to improve and that you do well on the present regime.

User
Posted 19 Sep 2018 at 06:45
Great news Dave given the circumstances. Keep welll and best wishes

If life gives you lemons , then make lemonade

User
Posted 19 Sep 2018 at 09:41
Hi Dave and well done with the chemo . I am interested to see how the Arbiraterone treatment goes as this could be one of the next things i am offerd on my next Onco app. All the best Geoff..
User
Posted 19 Sep 2018 at 19:21

Hi Dave, glad to hear the abiraterone is doing a good job and that you are feeling a bit better.

Long may that continue.

Ian

Ido4

User
Posted 04 Oct 2018 at 05:52
Well, a further 2 weeks have passed, and my regular wake up call to take my Abiraterone tablets at 6.00am every morning continues.

And what do you know, my PSA continues to dive down. This time it is down to 2.0 and all others bloods are very much behaving themselves.

My energy levels are getting back to normal and I"ve been signed back to go back to work

Well I must admit I didn"t see this on the horizon during the Chemotherapy period, but long may it continue, as I am aware that Abiraterone only lasts for a certain period of time.

Whilst writing I am reminded of the pioneers on this site who undertake trials, both for the betterment of themselves, but also those that follow.

Lyn reminded us some while back of a chap called Spursspark who attended one of the early trials of Abiraterone at the Royal Marsden some years ago. It is worth reading his profile. A true pioneer.

Thank you

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 Oct 2018 at 07:36
Really pleased to see this Dave ... good old abby-tabby doing what it does best. Long may it continue.

Spurspark was a very special man; I will never forget him.

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

User
Posted 04 Oct 2018 at 16:56

Good news Dave. Really glad to read your update.

Ian

Ido4

User
Posted 27 Nov 2018 at 18:31
Good news Dave. Sounds like things are going well.

Best wishes,

Ian

Ido4

User
Posted 27 Nov 2018 at 19:16

Dave

Great to see a fellow "micro mets" guy doing so well. I'm 6 weeks in on the Abi and apart from the weight gain, fatigue and flushes , doing ok.  I can't compare it to the chemo because I went sraight on the ht at diagnosis. Hope to return to work in a few weeks on reduced hours of course. I seem to run out of steam around 4 or 5 in the evening , hoping its just a winter thing. My onco has guys on his books 5 years in using abi so its  got to be positive news for some of us. May I ask , have you had any bone pain at all ? I get little twinges around the ribs elbows, pelvis and lower spine, not agony but like someone pinching the area !! Keep going mate , you " long timers " inspire the new boys like myself.

Best regards

Chris.

 

"Life is what happens to you while you are busy making other plans."

 

User
Posted 27 Nov 2018 at 20:00
Christ Dave you’ve been through the mill and back again , and relentless psa. It’s amazing you’ve managed all those treatments with so little side effects. Glad the Abi is working and long may it continue for you. An inspiration!

If life gives you lemons , then make lemonade

User
Posted 27 Nov 2018 at 20:33

Chris,

I really have no bone pain at all in the areas where the mets are, although the joints ache a bit now and then, especially after a long walk, but they soon recover.

I pretty much put that down to old age. 64th birthday next month.

I am back at work part time with reduced hours which keeps the brain active more than anything..

My best wishes to you Chris

Regards

 

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 May 2019 at 08:03
Hi Dave

Good luck with the scan coming up soon. I really hope things are ok and that Abiraterone has done a good job for you up until now. It’s great to hear that there are alternative drugs out there to try next. I hadn’t heard about the Lutetium, I’ll have to look it up.

My husband is just completing his sixth month on Enzalutamide and he’s doing really well with it so far. His PSA is presently 0.1. Long may it last. Hope you enjoy the summer months and we are looking forward to hearing how you are getting on.

Susiew

User
Posted 15 May 2019 at 15:36
20 docataxel sessions is amazing Dave. I managed the 6 my Onco arranged and it effectively wiped me out for 4 months. Waiting to see my Onco again next month after completing 20 RT sessions on 24 April.

Interesting to see what my PSA figure is following Prostap/Chemo/RT in quick succession.

John

User
Posted 13 Jun 2019 at 16:09
Hi Dave

glad to see the mets to the lungs and prostate have gone and sad to see the psa has gone up, good luck with the Enzalutamide, Tony was unable to have this due to being on clopidogrel (a blood thinner} so he has just started this week on Abiraterone.

onwards and upwards.

regards barbara

User
Posted 13 Jun 2019 at 16:11
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 18:52
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 08 Aug 2019 at 11:08

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 11:10  | 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 11:54
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 13:09

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

All the best,

Ido4

User
Posted 08 Aug 2019 at 14:55
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 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 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 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 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 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 30 Oct 2019 at 00:16
Wow looking good!
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 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 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 22:40

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

If life gives you lemons , then make lemonade

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 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 11:20

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!

Show Most Thanked Posts
User
Posted 18 Apr 2018 at 13:43
Thanks for the update Dave. I am amazed at you tolerating 16 sessions of docetaxel.

Good luck with the PSMA PET scan and hopefully it shows the docetaxel has done its job.

Best wishes, Ian.

Ido4

User
Posted 18 Apr 2018 at 16:22

Hi Dave, I’ve followed your journey ever since my husband was diagnosed in December last year. You are amazing to get through all that Docetaxel. My poor husband is getting poorly and he is only three in. The first he was hospitalised with an infection. Second was a fever and they kept him in. This time, no hospital but so so fatigued and feeling down. How did you do it? He is having the fourth next week and I’m getting worried already.
Anyway, really well done to you and good luck on your journey.

User
Posted 18 Apr 2018 at 16:35

Thanks Dave , always great for others to post their journeys. I admire your grit so far I really do. I get the serenity thing totally. I’m obviously seriously poorly despite any further evidence, and not even sure I’ll face all the further treatment We’ll see when I get there !! Otherwise I’m living life to the full and treating and holidaying where I can. I guess I should be grateful I’m getting this hiatus that I wanted so much. Good luck.

If life gives you lemons , then make lemonade

User
Posted 18 Apr 2018 at 16:43
Susie W,

Yes I have followed how your OH is doing. I do hope he manages to progress with the Chemo. My Oncologist told me yesterday that for over 70% of patients Chemotherapy works. In my case I make sure to take it easy during the cycle periods. I take my temperature twice a day and during days 7 to 10 never mix with anyone to avoid infections. Other than that I think luck plays a part.

All the very best wishes to you and your OH.

Regards

Dave

Edited by member 18 Apr 2018 at 16:49  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 18 Apr 2018 at 16:48
Thanks Chris,

I always follow your journey with interest and the fact that you are from Southampton is of interest to me as I am a season ticket holder at St Marys, although our season is heading to the trap door it appears.

All the best

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 18 Apr 2018 at 16:48

Wow, 70% is good. I didn’t know that. I do take temps and we try not mix with others at that time. Anyway fingers crossed for next time. It’s all we can do. Thanks for sharing your journey, it must be helping so many people.
Regards , Susie

User
Posted 17 May 2018 at 19:17
So I had another one of wonderful scans last week which confirmed that my mets to the bones, adrenal gland and lungs had all reduced and in some cases disappeared and there was no further spread of those pesky micro mets, so all good.

Unfortunately my PSA has jumped up as usual following completion of Chemo so the plan going forward is to give me a further 4 cycles of Docetaxel which started yesterday and once that is completed straight on to Zytiga.

My Onco said it was slightly the wrong way around in procedure, but hopefully the less intensive treatment will give me a break and work.

Onwards

Regards

Dave

Edited by member 17 May 2018 at 19:19  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 17 May 2018 at 20:52
That’s positive news about the mets Dave. Hope things continue to go well for you.

Ian.

Ido4

User
Posted 06 Jun 2018 at 07:45
So I completed my 18th infusion of Docetaxel yesterday and here is my very brief update,

Bloods taken before infusion showed a PSA drop from 24.6 to 8.5, so heading in the right direction.

ALP at 71 down from 78 and testosterone steady at <0,45.

All other bloods behaving themselves ish.

No side effects so far, although if past experiences are anything to go by a bit of tiredness will kick in on days 3 - 6 and then days 7 - 10 are those to be most wary of infections and given a fair wind days 11 to 21 hopefully will be fine, but you need to be so aware of the potential of the beast within to turn, so fingers crossed.

I received a great quote from the Oncology Doctor on call at the cliinic today. I asked him about Docetaxel and how it worked coupled in with Zoladex.

He said " Docetaxel is a charismatic sociopath, working with zoladex it charms cancer cells to death" i thought that was a rather good quote, although I always liked Lyn's description of it having the ability to take the wheels off the moving cart. I often think of that one Lyn.

Anyway, onwards

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 06 Jun 2018 at 09:59

That’s good that the blood numbers are moving in the right direction Dave.

Wishing you all the best,

Ian

Ido4

User
Posted 04 Jul 2018 at 17:55

Hi Dave I was just reading your profile, I was very interested to read how much chemo you have managed to get through - I didn’t realise you could keep going with it like that. Is that generally because you have responded well to the treatment so you keep going? I see your PSA has bobbed about all over the place. My Dad’s on chemo 7/10 and the oncologist said he didn’t expect it to go below 4.5 - in fact it has gone up to 5. I naively thought the chemo might bring it down super low like it does for some people. I wondered if you could share any information with me which may help me understand better. Thank you. I wish you all the very best.

User
Posted 04 Jul 2018 at 20:14
Yes, as far as my Oncologist is concerned and as far as my insurers, BUPA are concerned they wil keep me going on Chemo as long as it is working (which it is) and it is not unduly affecting my health.

I have now completed my 19th cycle and my 20th is due in a couple of weeks. They are now taking about then giving me a Chemo holiday and moving me on to Zytiga to give me some respite from Chemo, in the full knowledge that I can return to Chemo if needed.

I have no pain from my treatments or my condition and I have been told by my Oncologist that he has many treatments up his sleeve still.

All the very best wishes to you

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 06 Jul 2018 at 21:06

Originally Posted by: Online Community Member

Hi Dave I was just reading your profile, I was very interested to read how much chemo you have managed to get through - I didn’t realise you could keep going with it like that. Is that generally because you have responded well to the treatment so you keep going? I see your PSA has bobbed about all over the place. My Dad’s on chemo 7/10 and the oncologist said he didn’t expect it to go below 4.5 - in fact it has gone up to 5. I naively thought the chemo might bring it down super low like it does for some people. I wondered if you could share any information with me which may help me understand better. Thank you. I wish you all the very best.

 

PenP - chemo doesn’t necessarily cause the PSA to drop, sometimes the PSA rises as the cancer cells realise they are being attacked. Think of it as a silent scream as they die. 

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

User
Posted 18 Jul 2018 at 14:10

Docetaxel Chemo cycle No 20 completed today. Still feeling OK although after 20 cycles the tiredness factor is coming to the fore more persistently.

Anyway I am now due to jump on the Aberateron / Zytiga bus for the next part of my journey, so will be interesting to see where that journey takes me.

Bloods taken today show the current scores on the board.

PSA down to 7.1, Testosterone still less than 0.45, so Zoladex still working well after nealy 3 years and ALP now down to 71.

Onwards and upwards

Dave

Edited by member 18 Jul 2018 at 14:10  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 18 Jul 2018 at 14:46

Hi Dave,

wow, you’ve done incredibly well! Hope the new part of the journey goes well for you and The Docetaxel effects wear off soon.

regards Susie

User
Posted 18 Jul 2018 at 15:07
Best wishes Dave , all looking good for you if that is the right word ? Long may you battle on.

If life gives you lemons , then make lemonade

User
Posted 18 Jul 2018 at 22:17

20 cycles of docetaxel is amazing Dave. Your matter of fact way of dealing with things is inspirational. Lang may yer lum reek! Scottish for I hope you are still here for a long time to come.

Ido4

Ido4

User
Posted 18 Sep 2018 at 22:50

Well having completed my 20th cycle of Docetaxel my PSA came down to a semi reasonable 7 ish although it jumped up to a figure in the mid 40s within a month and the chemo was finally beginning to take a toll, so a change in treatment was in order.

Enter Abiraterone, or as it says on its rather plush packaging, Zytiga.

Well after only 2 weeks of being on Abiraterone I can report that my PSA has dropped to a very commendable 4.3 and my energy levels are pretty much getting back to normal. Well I certainly wasn't expecting that.

Latest PSMA Pet Scan also indicates a reduction in mets and no new pesky micro mets to be seen , so that is good,

Long may it continue.

Regards

Dave

 

Edited by member 18 Sep 2018 at 22:59  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 18 Sep 2018 at 23:49
Hi Dave, pleased to hear that abiraterone is beginning to do the job. More than that, your energy levels are improving. I’ve said before, how you got through the Docetaxel I do not know. My poor husband was wiped out with 6.

Hope things continue to improve and that you do well on the present regime.

User
Posted 19 Sep 2018 at 06:45
Great news Dave given the circumstances. Keep welll and best wishes

If life gives you lemons , then make lemonade

User
Posted 19 Sep 2018 at 09:41
Hi Dave and well done with the chemo . I am interested to see how the Arbiraterone treatment goes as this could be one of the next things i am offerd on my next Onco app. All the best Geoff..
User
Posted 19 Sep 2018 at 19:21

Hi Dave, glad to hear the abiraterone is doing a good job and that you are feeling a bit better.

Long may that continue.

Ian

Ido4

User
Posted 19 Sep 2018 at 20:48

Hi Dave,

I just read your story and I have so much admiration for your attitude . Pleased to read about your recent good results and long may it continue

Best Wishes

Paul 

User
Posted 04 Oct 2018 at 05:52
Well, a further 2 weeks have passed, and my regular wake up call to take my Abiraterone tablets at 6.00am every morning continues.

And what do you know, my PSA continues to dive down. This time it is down to 2.0 and all others bloods are very much behaving themselves.

My energy levels are getting back to normal and I"ve been signed back to go back to work

Well I must admit I didn"t see this on the horizon during the Chemotherapy period, but long may it continue, as I am aware that Abiraterone only lasts for a certain period of time.

Whilst writing I am reminded of the pioneers on this site who undertake trials, both for the betterment of themselves, but also those that follow.

Lyn reminded us some while back of a chap called Spursspark who attended one of the early trials of Abiraterone at the Royal Marsden some years ago. It is worth reading his profile. A true pioneer.

Thank you

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 Oct 2018 at 07:36
Really pleased to see this Dave ... good old abby-tabby doing what it does best. Long may it continue.

Spurspark was a very special man; I will never forget him.

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

User
Posted 04 Oct 2018 at 16:56

Good news Dave. Really glad to read your update.

Ian

Ido4

User
Posted 27 Nov 2018 at 18:18
Just back from my latest visit to the Onco to review my Abirateron / Zytiga journey and the results are good.

PSA has dropped to 1.3 with all other bloods good.

My energy levels are nearly back to normal and I have no side effects from the drugs I am on

So the "wonder drug" Abirateron is working well, and no doubt the cancer is desperately trying to work out what to do next

Hoping Abiraterone is effective for a long time to come

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 27 Nov 2018 at 18:31
Good news Dave. Sounds like things are going well.

Best wishes,

Ian

Ido4

User
Posted 27 Nov 2018 at 19:16

Dave

Great to see a fellow "micro mets" guy doing so well. I'm 6 weeks in on the Abi and apart from the weight gain, fatigue and flushes , doing ok.  I can't compare it to the chemo because I went sraight on the ht at diagnosis. Hope to return to work in a few weeks on reduced hours of course. I seem to run out of steam around 4 or 5 in the evening , hoping its just a winter thing. My onco has guys on his books 5 years in using abi so its  got to be positive news for some of us. May I ask , have you had any bone pain at all ? I get little twinges around the ribs elbows, pelvis and lower spine, not agony but like someone pinching the area !! Keep going mate , you " long timers " inspire the new boys like myself.

Best regards

Chris.

 

"Life is what happens to you while you are busy making other plans."

 

User
Posted 27 Nov 2018 at 20:00
Christ Dave you’ve been through the mill and back again , and relentless psa. It’s amazing you’ve managed all those treatments with so little side effects. Glad the Abi is working and long may it continue for you. An inspiration!

If life gives you lemons , then make lemonade

User
Posted 27 Nov 2018 at 20:33

Chris,

I really have no bone pain at all in the areas where the mets are, although the joints ache a bit now and then, especially after a long walk, but they soon recover.

I pretty much put that down to old age. 64th birthday next month.

I am back at work part time with reduced hours which keeps the brain active more than anything..

My best wishes to you Chris

Regards

 

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 27 Nov 2018 at 20:36

Thanks Chris J,

You are doing great yourself.

Keeping positive helps enormously in my experience

Dave

 

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 May 2019 at 07:40
Well, after an amazing 8 months on Abiraterone my PSA has jumped up to 12.4 so it looks like it may be time to get off the Abiraterone bus at the next stop.

It really has been a great journey on Abiraterone with so little side effects , but there you go.

I am having a further PSMA PET Scan in acouple of weeks to see what those pesky micro mets are up to and then we will decide on the next course of treatment which I am told will be either Enzalutamide or a brand new one called Lutetium.

I will keep you posted, meanwhile enjoy the wonderful weather we are having

Kindest regards to you all

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 May 2019 at 08:00
This is a link to this new Lutetium treeatment they are taking to me about.

I have all my treatments at the London Clinic, so i don"t have to venture very far.

https://www.thelondonclinic.co.uk/treatments/lutetium-177-psma-for-advanced-prostate-cancer

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 May 2019 at 08:03
Hi Dave

Good luck with the scan coming up soon. I really hope things are ok and that Abiraterone has done a good job for you up until now. It’s great to hear that there are alternative drugs out there to try next. I hadn’t heard about the Lutetium, I’ll have to look it up.

My husband is just completing his sixth month on Enzalutamide and he’s doing really well with it so far. His PSA is presently 0.1. Long may it last. Hope you enjoy the summer months and we are looking forward to hearing how you are getting on.

Susiew

User
Posted 15 May 2019 at 08:15

Wonderful news on your husbands journey SusieW.

I am so pleased he is doing well.

My Onco just pulled this Lutetium one out of the hat without blinking

So onwards

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 15 May 2019 at 15:36
20 docataxel sessions is amazing Dave. I managed the 6 my Onco arranged and it effectively wiped me out for 4 months. Waiting to see my Onco again next month after completing 20 RT sessions on 24 April.

Interesting to see what my PSA figure is following Prostap/Chemo/RT in quick succession.

John

User
Posted 13 Jun 2019 at 15:50
So the results of my latest PSMA PET Scan are in and the good news is I didn't light up like a Xmas tree this time. More good news is that the previous mets to the lungs and prostate area are all gone. Some previous mets to the spine have reduced, but a few new pesky micro mets have decided to take up residence in a couple of ribs, so at least we know where they all are. So all in all mixed results.

My PSA is now up to 19.2 so after nearly 9 months on Abiraterone it is now time to move on to my next treatment which is Enzalutamide, so it will be interesting to see how that one goes compared to the Abiraterone.

I was offered the chance to have a few cycles of Cabazitaxel, in lieu of the Enzalutamide, but i politely declined.

Onwards

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 13 Jun 2019 at 16:09
Hi Dave

glad to see the mets to the lungs and prostate have gone and sad to see the psa has gone up, good luck with the Enzalutamide, Tony was unable to have this due to being on clopidogrel (a blood thinner} so he has just started this week on Abiraterone.

onwards and upwards.

regards barbara

User
Posted 13 Jun 2019 at 16:11
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 17:30
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?

PP

User
Posted 13 Jun 2019 at 18:52
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 19:11

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 11:08

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 11:10  | 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 11:54
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 13:09

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

All the best,

Ido4

User
Posted 08 Aug 2019 at 14:55
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 16:02
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 22:49

BUPA are funding my treatment.

Regards

Dave

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