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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 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 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.

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"
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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.

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.

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

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

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

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

 
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