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Cabazitaxel Next

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User
Posted 11 Jan 2018 at 18:35
I rarely post about myself, but think that others may be interested in my experience and the change in my treatment.

First up, I have religiously tracked my PSA over the past ten years, imbuing it with an undeserved significance. It is currently 5.9, having risen from 1.1 at the end of a shortened (because I gained pulmonary embolism) course of docetaxel. The chemo was to deal with soft tissue mets (I have never had bone mets). These were in the connective tissue which binds the bowel to the spine, in my urethra (although I call this the mothership, as I believe it to be a remnant of the original PCa in my removed prostate)and in my liver. Unfortunately, since the chemo ended in August my PSA has risen and the PCa has spread, to remove all the benefits of the chemo, although no new sites are indicated. The shadow in the liver does look worryingly large! It is clear to me that in my case at least the prednisolone and then dexamethasone since August have achieved zilch.

The plan now is up to ten cycles of cabazitaxel then if necessary a rechallenge with docetaxel. I am not yet at the last throw of the dice, but getting too damned close for comfort!

Future guidance on PCa developments will be obtained via scans and not PSA!

So the lessons I have learned are 1. tay fit, which I shall need to be to see out the next ten cycles Fortunately, I am. 2. Don't trust the PSA number, it tells a very partial truth. 3. Rely on the evidence of your own eyes Stephen viewing scans!

AC

User
Posted 17 Jan 2018 at 18:13

Folks, spent an almost enjoyable couple of hours at the Arden Centre this morning. Discovered that nursing staff turnover has been extremely high since I was last there for docetaxel in August. Just about three familiar faces out of a couple of dozen there. Rather worrying! As I was there over lunch time, I experienced the curly cardboard sandwiches again. Note to self - ,bring your own next time! I was given the infusion much as with docetaxel, but Piriton and Ondansetron were delivered via i/v. Usual flush before and after the cabazitaxel infusion. No pills to take beforehand and only prednisolone to be taken daily between cycles. Am off the useless dexamethasone.

Now, it's just a case of waiting to see if there are side effects and then dealing with them. Will report how it goes.

AC

User
Posted 12 Jan 2018 at 07:00
Thank you for sharing this AC I wish you well in your treatment. I read everyone’s posts with great interest as my Dad navigates his way through treatment. I want to know as much as I possibly can do posts like yours are really helpful and appreciated. I must take a leaf out of your book and try to be more positive. Wishing you all the very best. PenP.
User
Posted 16 Jan 2018 at 20:08

Best wishes for tomorrow AC - kick its butt!

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

User
Posted 17 Jan 2018 at 06:52

Very best wishes AC.

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 06 Mar 2018 at 19:16

Ah Lyn, trouble is that half of the weight loss is fluid from my left leg - lymphodoema. Goes straight back on when I get back into my normal pattern. Mind you, I'm being very cautious about booze during the chemo, diet lemonade is my very boring thing! That tends to keep the weight down, too. It seems that being in bed most of the time, so horizontal, the leg loses its liquid. If I could walk around with my left leg wrapped around my right ear, Ministry of Funny Walks style, I'd probably be pretty slim, like John Cleese used to be!

AC

User
Posted 21 Mar 2018 at 17:53

Valleyboy, had my fourth infusion today and as usual I reminded the nurse that so far the record is five attempts to get a cannula working. This one got it right the second time. So I know about soreness from the five sites time! I know it's cruel but I can't resist setting them the challenge! Surprising how the skill level varies. I learned that the best do it by feel rather than sight. It also helps if your veins are close to the surface. Mine are pretty well covered and a bit kinky. They like long straight runs, which I don't have. Who'd have thought such a simple thing could be so complex?

AC

User
Posted 22 Mar 2018 at 07:06

AC, Valleyboy,

Keep going guys.

Unfortunately or fortunately (not sure which) I am still on the Doctetaxel bus. The one behind you,

Coming up to infusion 16 and another Chemo break next week.

PSA back down to a more respectable 5.8 and next to no side efffects so can't complain.

As far as canulas go my nurse has found a great spot on the back of my hand to use. Not sure if you you have tried that one.

Warm regards to you both

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
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User
Posted 11 Jan 2018 at 19:38
AC, I hope the cabazitaxel does a good job for you. You have summarised your situation very succinctly.

I totally agree with you on PSA and scans.

Very best wishes,

Ian

Ido4

User
Posted 11 Jan 2018 at 20:45

Good luck with the cabazitaxel AC.

Excuse my ignorance but if it helped before Is a repeat of the chemo not possible

We can't control the winds - but we can adjust our sails
User
Posted 11 Jan 2018 at 20:56

Cabazitaxel is another form of chemo Johsan, and if it goes okay AC will be able to try the docetaxel again afterwards.

AC, I like your determination x

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

User
Posted 12 Jan 2018 at 07:00
Thank you for sharing this AC I wish you well in your treatment. I read everyone’s posts with great interest as my Dad navigates his way through treatment. I want to know as much as I possibly can do posts like yours are really helpful and appreciated. I must take a leaf out of your book and try to be more positive. Wishing you all the very best. PenP.
User
Posted 12 Jan 2018 at 07:35

Wishing you all the best AC with your next line of treatment

Bri

User
Posted 12 Jan 2018 at 08:02

Hi AC

Having had both Chemo thought i would let you know my findings

Steroids

Docetaxel, high dose steroids taken before, on the day and day after turned me into a Duracell bunny, sleep for a few day was all over the place.

Cabi, steroid through a drip on the day, everything normal and sleep patterns stayed the same

Hair 

Used cold cap for both and kept hair on my head, with Docetaxel i lost all body hair with Cabi i lost nothing often wondered whether the cold cap on Cabi was needed

Nails 

No problems with either

Taste

With Docetaxel horrible taste for around 6 days, ice cream became a staple part of my diet, with Cabi very minor changes carried on eating as normal

Prior to starting  Cabi the chemo nurses said it was a lot harsher Chemo than Docataxel i found it a walk in the park compared with Docataxel and continued working, but then my results with Cabi was rubbish.

But we all respond differently to each treatment, i wish you well and hope you results are great

Si 

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 12 Jan 2018 at 19:30

Thanks to all for your thoughts. Positive thinking is in my blood and I can be no other way, fortunately.

I could have a repeat of the docetaxel, because it did work, and was stopped largely because I got PEs. It could be that with Apixaban having come to my rescue, I could take ten cycles of docetaxel and that might do the trick. My oncologist would be happy with this. I thought trying another approach first, arguably a more potent variety of chemo, was worth trying first, leaving the gentler docetaxel in reserve for rechallenging the PCa, later. As I found docetaxel, not exactly a "walk in the park" but relatively easy, I certainly hope to find cabazitaxel even easier!

User
Posted 13 Jan 2018 at 10:48

hi AC

Good luck on this stage of the journey, fingers crossed its an easier path.


Ray

User
Posted 16 Jan 2018 at 17:54

Only five days have passed and I start my cabazitaxel experience tomorrow. I rate that b****y well done by Coventry's Arden Cancer Centre! Great Service,, NHS!!

AC

User
Posted 16 Jan 2018 at 18:08
That’s amazingly quick. Best of luck tomorrow.

Ido4

User
Posted 16 Jan 2018 at 19:39

Best wishes for tomorrow, Hope it goes well and is successful.

User
Posted 16 Jan 2018 at 20:06

Good luck AC. I hope all goes well for you

We can't control the winds - but we can adjust our sails
User
Posted 16 Jan 2018 at 20:08

Best wishes for tomorrow AC - kick its butt!

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

User
Posted 16 Jan 2018 at 20:15
Good luck for tomorow hope all goes well, ive followed your posts with interest as my OH is on this journey although a different path, your so informative and your knowledge and advice you give so freely to us all on the forum is amazing id just like to say thank you for taking the time to let us gain from your experience it means a lot...jo.xxx
User
Posted 16 Jan 2018 at 20:55
All the very best for tomorrow AC I will be thinking of you and wishing you well. Is The Arden Centre at UHCW? Dad had his radiotherapy at UHCW. We thought everyone there was brilliant. Although the parking situation was shocking!
User
Posted 16 Jan 2018 at 21:03
Good luck AC
User
Posted 16 Jan 2018 at 21:24
Hope tomorrow is as hassle free and effective as there things can be

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 16 Jan 2018 at 22:22
Good luck for tomorrow AC, we are at the oncologist on Monday for a review after finishing Radium 223 and we must surely start a new journey with PSA at 77. I’ll be thinking of you, hope it goes well.

Devonmaid xx

User
Posted 16 Jan 2018 at 22:28
Good luck AC Hope all goes well. This treatment has been mentioned for my hubby further down the line. So will follow your journey with interest

Debbie x

 
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