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"The road ahead"!

User
Posted 05 Feb 2018 at 17:41

Valleyboy, I'm a bit ahead of you in the cabi race, but following in Si's footsteps. Just completed my first cycle and found it comparable to my experience with docetaxel. First four or five days some nausea, for which domperidone wasn't a great help, then smooth sailing. Bloods seem to have been unaffected. Hope yours goes well.

AC

User
Posted 05 Feb 2018 at 19:28

Good to hear from you again Valleyboy and great that you got your golf holiday in.

My PSA also went up after Chemo finished, so I am back on the Docetaxel bus. Cycle no 13 at the last count.

Hoping Cabi works well for you, but still many more treatment options are out there and more coming on line.

All the best

Dave

Edited by member 05 Feb 2018 at 19:30  | Reason: Not specified

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 28 Feb 2018 at 15:58

That's a lot of chemo, Dave. I wondered if you had been tested for DNA repair gene mutations? If you have one (about 20% do) you might be eligible for a trial of a PARP inhibitor drug.
Good luck!

User
Posted 28 Feb 2018 at 16:50
Thanks for the heads up. I must admit I have never heard of that one, but i will mention it to my Onco.

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 08 Mar 2018 at 08:46

Hi all
Just a quick update as I went for my 1st of 6 Cabazitaxel infusions yesterday and other than some lower back pain between 11pm and 1 pm last night everything else seems ok.
Infusions went in a similar order to my previous regime-saline drip, steroid drip, chemo infusion then saline drip. But this time they also added an antihistamine drip before the steroids?
The reason they’ve started me back onto another course of chemo is because my PSA back up to 322, form 128, (started in Feb/17 at 1547), so they’ve kept the Enzalutamide on the back burner at present and gone straight to a stronger chemo regime to try to knock it back a bit?
Home by 3 pm yesterday and took my new puppy for a walk, and I’m off out again with him around 10am this morning this time for his first experience of the beach.
With regard to ancillary tablets I’m back on Prednisone (2 a day) for 21 days and this time around I have to have bloods every week before my next infusion instead of just the day before when on Docetaxel. I’ve also been given Loperamide and Metoclopramide for use as required, none required yet??
As usual I ll keep you updated as to any significant changes otherwise I ll just update after next infusion.
All the best everyone, stay strong.
J

User
Posted 08 Mar 2018 at 08:51

Enjoy your beach walk Valleyboy and good luck for the rest of the infusions

***


We can't control the winds - but we can adjust our sails
User
Posted 08 Mar 2018 at 08:58

Thanks for the update. I do hope that this works for you with minimal side effects.
Best wishes

User
Posted 08 Mar 2018 at 10:53

Thanks for the update Valleyboy.

Your PSA is going up post treatment as is mine, but as long as the treatment brings the PSA back down again and you can tolerate the treatment then that is the positive branch to hang on to.

All the very best wishes for success in your present treatment.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 28 Mar 2018 at 15:51

Ok just back from 2nd infusion of Cabazitaxel and as usual all went well and feeling ok.
As expected (after 1st infusion), my PSA has “spiked” back up to 711 ?? (From 311), However via my onco although concerning she wants to wait until next reading in 3 weeks time before taking any other action. As hopefully by then if the PSA starts to reduce then all ok, if not???
Anyway still feeling fine so just off out for a walk with the dog, and as for previous posts unless anything untoward happens I ll update you all again in 3 weeks.
Keep the faith
J.

User
Posted 28 Mar 2018 at 16:34

Thanks for the update ValleyBoy, it's good to hear how you are doing.


Enjoy your walk with the dog and hopefully things will continue to go well for you.


I can't really comment on the spike in PSA but Lyn has mentioned this as often being the case as the cancer cells "fight" the chemo attack.


I'm sure Lyn and others will explain this better1


Best wishes,


 


Ian

User
Posted 28 Mar 2018 at 17:21

Valleyboy, my experience (now in fourth cycle) is that PSA changes are much less dramatic than with docetaxel and start on the downward trend from your current cycle. I certainly hope that is true! You will need some big changes, though.

I hope you get them!

AC

User
Posted 18 Apr 2018 at 18:29

Ok back from 3rd infusion of 2nd line Cabazitaxel chemo. All ok at mo. PSA down 130 points from 3 weeks ago, so still high but at least it’s now heading in the right direction?? Let’s hope for similar results again in 3 weeks?
Beautiful day so just walked the dog for 1 1/2 hours, had some tea and now gonna have 40 winks. “ night night John boy”!!😀

User
Posted 09 May 2018 at 18:00

Ok, back from 4th infusion of Cabi and all ok at mo. Played golf yesterday no issues and playing again tmos so tally-ho. PSA down another 7 points to 580 so not much to talk about but again moving in the right direction. Just had my usual afternoon nap and now I’m ready for anything!!😂 As long as it involves golf and footie on TV. !! “Keep the Faith” J.

User
Posted 10 May 2018 at 07:14

Re above message even tho at the moment I remain generally free from any dibillitating aches and pains——I notice that although my PSA remains high it’s still only a third of my starting point..also my alkaline phosphate has dropped from 248 to 186 over the past 3 months, does that mean that something good may be happening with the mets on my bones? Any comments greatly appreciated. Thanks J.

User
Posted 10 May 2018 at 07:39
Great to hear you’re still playing golf, are free from pain and enjoying golf and footie.
Hope things continue to go well with the cabazitaxel.
I can’t answer your question about your alkaline phosphate but I’m sure someone who knows more than me will come along.
It’s a nice sunny morning where I am, hope it is where you are too, enjoy the golf.
Ian
User
Posted 10 May 2018 at 11:00

Good luck Valley boy wish you well with your treatment.


John.

User
Posted 10 May 2018 at 20:15

Well it certainly suggests that there is less bone activity than before. Enjoy the golf :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 May 2018 at 17:48
Quick update—Bloods all ok for chemo (Cabazitaxel) 5 of 6 tmos, but PSA up again 46 pts to 626. So as I’m coping well with chemo I’m going to ask my oncology specialist if it’s worth considering upping my current chemo infusions from 6 to 10 cycles in an effort to stem the tide?? However alkaline phosphate still continuing to drop by a further 20 pts to 181 so at least something is going in the right direction and it’s down almost 100 pts over the last 3 months? As stated previously no pain or general health issues at the moment in fact as usual I played in our 18 hole Golf comp this morning and had a half decent score! And have taken the dog for a walk this afternoon?. Anyway unless anything untoward happens tmos I ll update you all in approx 3 weeks.
Ps went to a local PSA meeting last week where one of the speakers was Professor Robert J Thomas (Bedford and Addenbrooke hospitals, Coventry and Cambridge University lecturer) who spoke to us on “Lifestyle, nutrition and Cancer” in what was a very informative speech so much so that I even bought his book!! Keep the Faith. J.
User
Posted 20 Jun 2018 at 15:15
3 weekly update——just had chemo 6/6 of 2nd string Cabitazaxel. All ok at mo. PSA down 68 to 558. ALP down 21 to 160. Which is down over 100 since this time last year.
So it’s a full CT scan for me on the 29th June, followed by a meeting with my consultant to see if, as my PSA has finally started to drop, wether she’s going to push me on for 10 infusions, or look at another treatment option? Any comments/ideas/experiences welcome.
Just an aside, also due my yearly Diabetes review next week and bloods for that have come back down to 42 so all good there then!,
Also lucky I didn’t have a drugs test when playing golf yesterday as I parred 8 of the last 9 holes!!😜🏌️
Keep the Faith
J.
User
Posted 20 Jun 2018 at 16:46

I hope your PSA continues to fall.


Lucky you didn't get drugs tested after the golf.
At my course there would be cries of "bandit"!


Ian

User
Posted 27 Jun 2018 at 06:33

IDO4.   Thanks for ur comments.    Wouldn’t wish pca  on anyone but after last weeks run of Pars, yesterday I scored 45 pts in a club comp (came 2nd!!), thus reducing my handicap by a further 2 shots!!  So that a 3 shot reduction in two weeks. No banditry here then!!😂


off for my annual diabetes clinic later but with my blood marker being 42 with <48 ok, I’m hoping it will just be more monitoring and no tablets today. 


 

User
Posted 09 Jul 2018 at 14:20
Ok, just back from a meeting with my onco and as my scans indicate no additional activity in my bones, (ie. a stable reading), then she’s pushing me on for a further 4 Cabazitaxel infusions (taking it up to 10 sessions). In an effort to bring my PSA down a bit more, currently 552.
It then looks as if I ll be going to Bristol once a month for 6 sessions of Radium 223. Which again targets bone activity, and when you consider that todate I’ve had all my current treatments within 6 miles of home ain’t too bad is it?
So if anyone out there has experience of Radium 223 treatment I love to hear your comments on same.
Ps
As I’ll need to go over the “Bridge” to get to Bristol do I need to take a tank filled with Welsh air with me!,! 😂😜
User
Posted 09 Jul 2018 at 15:55

Thank you for the update Valleyboy - I always read your posts with interest and wish you the very best with your ongoing treatment. 

User
Posted 10 Jul 2018 at 23:21

Oh Valley boy just another lad that I keep an eye on 😉


Trevor had all 6 treaments of radium 223 so ask away 


xxx

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Jul 2018 at 17:48

Thanks. Just had chemo2/7 Cabazitaxel, and as usual all ok and completed in approx 3 hours.    just took another look at Trevor’s bio, and whilst it seems he coped ok with the radium treatment, he obviously had so many other things going on that they eventually combined to take him away. Still makes me sad thinking about it, but when you consider he started with PSA at app 13000, what am I moaning about 1547!😂


so if you do feel up to it (and don’t worry if you don’t), would you still recommend Radium 223 As a treatment option?  and what benefits if any did it give Trevor?


ps.


as I’ve already had Docetaxel and on Cabazitaxel chemo at the moment, (plus lifetime hormone injections), and as at the moment I’m still relatively healthy, still playing golf, walking, gardening etc. I m obviously going to take my oncos advise and take the radium. And then I’m still hoping there’s also a few other treatments in the “box” following this!


stay strong x 👍

User
Posted 12 Jul 2018 at 10:50
Always good to follow your progress Valleyboy, and good to see you are still relatively healthly which is great news.

I think I picked up a query on another thread which you raised as to further treatments.

I am no expert by any means and I'm sure Lyn or some of the other posters would know more about it than me, but my Onco has repeated that the following treatments still remain on the tablle. So in no partucular order they are:

Cabazitaxel
Mitoxantrone
Zytiga / Abiraterone
Enzalutamide / Xtandi
Immunotherapy drugs

My very best wishes to you Valleyboy

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 26 Jul 2018 at 22:44
Well it looks like I’m moving on to another treatment plan—Radium 223.
Had a phone call today from both my onco’s specialist nurse here in Wales, and the radiography section in the Bristol Royal Infirmary stating that I’m due to start a course of 6 infusions, (1 per month ), from 10th August. So that’s no more chemo for me (at the moment), just completed 7 of 10 Cabazitaxel infusions but my PSA remains high at 542.
Also they’ve agreed that I can have my bloods and a clinic visit about 10 days before each infusion here in West Wales. Which means I only need to travel to Bristol once a month which is great. Evidently Treatment will take about one hour from arrival to discharge, so it’s also much quicker than a chemo infusion?
Done a bit of background reading about Radium 223 and it seems as if my PSA Reading will not be as important a marker on this treatment as my general health and well being combined with bone pain relief. However, as I explained to Bristol this afternoon, to be fair at the moment my bone pain is minimal, and I’ve been painting, strimming and trimming bushes today!! With Golf planned for tmos and Saturday!
So as I embark on yet another treatment journey I ll endeavour to keep you all up to speed on my progress over the next 6 months.
Keep the Faith
J.

User
Posted 26 Jul 2018 at 22:53

Just back from check- up at Marsden for trial that I am on. Good chat with doc. It’s inspiring what they have coming in terms of new treatment approaches. Definitely keep the faith!

User
Posted 26 Jul 2018 at 23:01
Dark Warrior. Thanks for that, but I wonder when you’ve got 5 mins could you expand on your comment “re new treatment approaches”, ie. what are they?
Thanks from a Celtic Warrior!!
User
Posted 26 Jul 2018 at 23:10
Glad to see you are moving on to your next treatment plan and you remain active and in relatively good health.

I certainly couldn't be as active as you in this heat. That is for sure.

I look forward to following you on your latest journey

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 26 Jul 2018 at 23:22
I've been looking for ages for someone to trim my bushes :-/

Sorry to see that your PSA has remained high but some on here have had great results with Radium 223 and less travel will be a blessing. Fingers crossed for you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Jul 2018 at 06:26

Thanks LynEyre
Yes it’s a shame about my PSA No’s but as the best I’ve managed so far is 94? (Originally 1547), i suppose I’ve just got to go with the flow and listen to my body? Which at the moment says everything’s fine (with no undue aches or pains),. So even tho there’s obviously a lot going on inside (with such extensive mets etc), whilst I’m coping well I ll just get on with it and hope it lasts as long as possible, and that the Radium knocks a few of the blighters off my bones!?!
Yes the reduced travelling will be a godsend as it’s 116 miles each way to Bristol, so again I must thank both Health Authorities for co operating in my case and once again I praise the NHS for the service it’s giving me. As I’ve only been to Bristol once so far for a clinic/consultation visit, but just as with my local oncology unit everyone I met there couldn’t have made me feel more welcome.
ps. Trim ur own bushes it will do you good!?!😂


keep th Faith


J.

Edited by member 27 Jul 2018 at 06:30  | Reason: Not specified

User
Posted 27 Jul 2018 at 08:38

Dear ValleyBoy, See my thread “Medical science, progress and hope” where I post interesting new stuff. They are also keen on the PSMA targeted approaches.

Edited by member 27 Jul 2018 at 08:57  | Reason: Not specified

User
Posted 27 Jul 2018 at 09:12

Dark Warrior


sorry for being a bit “thick” but how do I get into that thread? 


Thanks

User
Posted 27 Jul 2018 at 10:11
You can find it under Treatment/advanced and metastatic, Good luck with everything!
User
Posted 27 Jul 2018 at 10:35

Here it is Valleyboy


https://community.prostatecanceruk.org/posts/t15782-Medical-science--progress--and-hope


 


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Aug 2018 at 19:55
Ok. Back from Bristol where I’ve just been given my first infusion of Radium 223 and at the moment I feel fine. No undue side effects, although I ve been told to keep an eye out for the more common side effects, eg. Sickness/diarerraha, increased bone pain over next 48 hours and how to cope with these. Also given a comprehensive briefing on what Ra223 does and what it doesn’t do? And a print out of my blood work from July which indicate that whilst my PSA has gone back up to 588, (and Ra223 treatment will not hit this), my ALP has decreased again to 135 which is only 5 points above “normal” and Ra223 may hit this further? So all in all I’m feeling fairly optimistic at the moment and look forward to my next infusion on the 7th Sept.
Just like to mention that I couldn’t have been given a warmer and more professional welcome by all the staff in Bristol Oncology unit, proving that the NHS treatment I’m receiving in both Carmarthen and Bristol is second to none. Well done to all concerned.
ps. Golf already planned for tmos morning, followed by Swansea’s 1st home game in the Championship at 3pm. 🙈😂
User
Posted 10 Aug 2018 at 20:54
Siwmae Valleyboy and good luck with this treatment. Not had it myself (yet) but all the medics I have spoken to are enthusiastic about it.
User
Posted 10 Aug 2018 at 22:11

You sound quite positive Valleyboy. Keep golfing. I am too!


wishing you all the best.


Ian

User
Posted 11 Aug 2018 at 09:36

Keep up the good fight Valleyboy they seem to be giving you some good treatment sound good apart from the traveling must be very tiring  for you with all that treatment.


Good luck for the future.


John.

User
Posted 11 Aug 2018 at 21:35
Ok for those tracking my progress I’ve just completed day 2 after my first Radium 223 treatment and to date I feel fine with no undue side effects.
Played golf this morning, then went to watch the “Swans” beat Preston. Then popped in the local Rugby club on my way home for a few “Becks Blue” and a salad roll, and yes I am the only one down there drinking it!!😜
Bit tired now so having and early night, but as we ve been awake since about 5 am with the puppy it’s not really that early is it!?😂🐶
Keep the Faith
J.
User
Posted 12 Aug 2018 at 03:27
A salad roll :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Aug 2018 at 06:57

Body of a god—-pity its Buddha!?!😂

User
Posted 15 Aug 2018 at 21:10
Ok just a quick update on Day 6 of my once a month Radium 223 treatment. Well they said fatigue would be a major factor and they ain’t kidding as for the last 3 days I’ve been completely wiped out by the afternoon. However an hour shut-eye in a comfortable chair sorts that out??
They also told me to expect increased bone pain, (previously had very little), for 36 to 48 hours and I’ve had that too, but again easily controlled by taking one paracetamol and two ibuprofen as required, and as I hope the increased pain is a sign that the radium is attaching and working itself into the “growths” on my bones then I’m happy with that!
Other than that all ok, no probs with appetite or toilet habits so let’s hope these little niggles wear off as I move into my 2nd week post 1st treatment.
Keep the Faith
J.
User
Posted 27 Aug 2018 at 19:19
Day 17 of my monthly Ra223 treatment.
And other than fatigue in the afternoons all ok. (Also adding to my tiredness, my mother’s who’s 90 has recently fallen down and broken her hip which means I’m driving a 160 mile round trip every other day to see her in hospital).
Bone pain virtually gone with just the occasional paracetamol and ibuprofen needed after Golf or a mowing session.
Had my pre next session consultation in the week ( FaceTime call between West Wales and Bristol), and all ok except height still the same 5’ 5”!!😂 but slight further weight gain. Bloods taken next day with results due tmos. So if that’s all ok I ll be off the Bristol for my next session on the 7th Sept. as usual unless anything unforeseen occurs I ll update after next session.
Keep the Faith
J
User
Posted 29 Aug 2018 at 09:40
Quick update—just had my blood results and all ok for next Ra223 session on the 7th Sept. However as I’d been told prior to my 1st session that this treatment doesn’t really effect PSA, I’m particularly happy that my PSA is down over the month by almost 200 points to 418?? However my bone marker, (Alkaline Phosphate) which can be affected by this treatment is up 42 to 182?? Anyway I ll keep an eye on these stats after session 2, to see if there’s any trend developing?
Therefore has Anyone with experiance of Ra 223 come across similar treatments outcomes previously.
Thanks
J.
User
Posted 29 Aug 2018 at 10:17
The all phos result might just be a transient flare related to the treatment. Stay with it!
User
Posted 29 Aug 2018 at 10:40
Thanks for that info. Dark Warrior’, and don’t worry I ll hopefully be riding this treatment plan for the full 6 infusions and then reviewing the outcomes as/when appropriate.
User
Posted 29 Aug 2018 at 11:07

Hi valleyboy


I haven't posted for ages and decided to have a wee look at some posts. I have read your story with interest as it may be the route that I may be going too.


I've had PR, RT, Chemo and 3 monthly Zoladex implant. I know that in the not too distant future I too will need further treatment as I now have bone Mets, diagnosed last Jan hence the chemo.


Have my next appointment in 2 weeks time with consultant to map out the future. So really interested in your posts.


I'm 58 and just took up golf and loving it, should have done it years ago. Anyway stay strong.


Onwards and upwards.


Sandy


 

User
Posted 29 Aug 2018 at 11:27
Sandy
Glad my posts may have been of some use to you and that whatever treatment plan you follow works out well for you.
And yes I still find that even 18 months after a rather sobering initial diagnosis I mostly continue to enjoy every day with just fatique as my worst enemy.
Re- golf go for it—as after my initial diagnosis I couldn’t play for 6–9 months and really missed it. However during one of my specialist oncology consultations at the start of this year she said, “listen to your body”, and if you feel ok play, if not give it a miss, so that’s what I now do and usually mange to play twice a week without any problems.
Other than that I’m still gardening, cutting grass and walking the dog on a regular basis, and although whilst I still maintain a dietary plan, ( ie no processed food, red meat and limited dairy products, plus no alcohol), it’s not as rigid as at first, which has resulted in some, (most) of my initial 1 1/2 stone weight loss being put back on!! However I’m still feeling fine and as most of my treatment infusions are weight based they just have to give me a bit more product to compensate!!😂
Take care.
Keep the Faith (Northern Soul Rules).
J.

 
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