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"The road ahead"!

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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

 
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