Journey begins with Cabazataxel

User

Posted 13 Mar 2015 at 19:08

Hello everyone thank you very much for the advice to my previous questions.

After discussions with onc the choice was Cabazataxel . Apparently abi tabs do not work as well when used straight after enzalutamide .

Not only was psa on the rise but also the alp, which thanks to some posts on this site I knew a little about.

I will update after the first session.

Just to say I have enjoyed reading the posts and would like to say you really are a great team.

Have a great weekend

Joy

User

Posted 13 Mar 2015 at 19:08

Hello everyone thank you very much for the advice to my previous questions.

After discussions with onc the choice was Cabazataxel . Apparently abi tabs do not work as well when used straight after enzalutamide .

Not only was psa on the rise but also the alp, which thanks to some posts on this site I knew a little about.

I will update after the first session.

Just to say I have enjoyed reading the posts and would like to say you really are a great team.

Have a great weekend

Joy

User

Posted 14 Mar 2015 at 14:07

Thank you so much for the replies. We are so much luckier than some as the company my oh works for have so many insurances in place including private health. I think this makes it easier for his oncologist. But gosh what a strange cancer this is. When he stopped the enz on Tuesday the aches and pains went, then today he says his legs feel like he as ran a marathon. Baffles me how cancer pain and aches come and go. When I mentioned this to the onc he replied I have stopped wondering about this cancer it really is not textbook. Well we are off to Wakefield tomorrow to watch our grandson box in the quarter finals national championship, the semis and final are next week so we have week to recover from Monday's first cycle.

User

Posted 29 Mar 2015 at 15:25

Hello wall so far so good. Hubby has only had one cycle but no nasties just slight fatigue. We see the onc on Tuesday so will know if the psa has come down. Due to the bank holiday he will have his second cycle on the 13 April, I will update any changes. My hubby also tolerated docetaxel ok so fingers crossed that the same goes for your hubby. Good luck and please keep me posted on your progress.

User

Posted 06 Apr 2015 at 12:51

Hi Sue hope you have had a nice Easter. Yes after the hormones stopped working Maurice had docetaxel supposedly for ten cycles. However after six the psa began to rise. After eight the onc decided we needed to move to enzalutamide which was a miracle pill for approx seven months and that psa was on the up again. The important thing according to our onc was that it was doubling in less than three months. We were told that the velocity of the psa is more important than the number, so he felt we now had to move to Cabazataxel. He also informed us when we asked about Abiraterone that Abby isn't so effective when taken immediately after the enzalutamide. I am glad things are settling down and some improvement is occurring. Maurice has a blood test on Thursday before chemo next Monday so hopefully it will have dropped some more. When is your next chem?
Are you on Facebook?
Luv Joy xx

User

Posted 24 Apr 2015 at 12:26

Hello valid glad to hear your hubby is doing ok with Cabazataxel. My hubby has had two cycles so far and also coped well on it.
He has fatigue but no sickness. Constipation kicks in after chemo but we have a supply of Senna which does the trick. His psa also rose after first treatment as it did with docetaxel, we were told a lot of patients get this flare up then it settles.
Good luck as you proceed on this journey keep well both of you x
Joy

User

Posted 29 Apr 2015 at 20:43

Hi yes things not too bad here as I've said before the night of chemo and the following night very uncomfortable and painfull then all change! Things are not to bad at all not as fatigued as last cycle as the sleeping is much better as we have doubled up he sleeping tablets but it has made so much difference😀 my oh is now picking his golf clubs up now if he masters that and get back on a golf course after spinal cord compression who knows what you can achieve!
I'm keeping a watchful eye on that progression keeping positive all the way
Love to you all .

User

Posted 26 Sep 2015 at 11:49

I'm sorry Sue that your husband (and you) are going through such an extended tough time.

I know little about the treatment so all I can say is I wish you both a bit of relief, enough time to get through the treatment and find some joy in the "normal" things in life again.
(Although whatever stage our cancers are - it's rarely "normal" for any of us any more anyway is it)

Wishing you both a better time

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 06 Oct 2015 at 17:18

My thoughts and condolences are with you Joy.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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User

Posted 13 Mar 2015 at 20:04

Hi Joy,

Best of luck with cabazataxel, probably my next port of call.

Nice to know you still have abi tabs i really rate this drug

I will be looking for your updates with interest.

Best Wishes

Si x

Don't deny the diagnosis; try to defy the verdict

User

Posted 13 Mar 2015 at 22:16

Good news, I believe this drug is one being dropped from he Cancer drug fund so I'm glad you have for it now. Fingers crossed it all goes well for you.

Love Allison

User

Posted 14 Mar 2015 at 14:07

User

Posted 29 Mar 2015 at 09:46

Hi I'd like to know more about this treatment my husband is lucky enough to get it before it is dropped he starts next Wednesday,he has already gone through 10 rounds of doxcetexel
With few problems so we are hoping the same thing this time .
Any similar experiences?
Thanks.

User

Posted 29 Mar 2015 at 15:25

User

Posted 01 Apr 2015 at 16:43

Our journey began to day first cycle came home with lots of tablets and 10 injections ,one to have daily all seems a little daunting but I'm sure it will all come together .
Will keep you posted joy thanks for reply.
Sue.

User

Posted 02 Apr 2015 at 08:59

First night no sleep because of steroids which we knew would happen ,but lot of aches and pains,I'm presuming it's the treatment attacking the cancer cells ?
Not to bad this morning tho so see how it goes!

User

Posted 02 Apr 2015 at 17:14

Hi wall not sure what the injections are for. Maurice comes home with steroids and one injection to boost the immune system.
Are you taking the steroids in the morning with breakfast.
Sometimes you do get a flare up when starting a new treatment so let's hope the aches and pains are down to that.
Love and luck to you xxx

User

Posted 04 Apr 2015 at 09:06

Hi joy after two sleepless nights aches and pains have gone,now my oh can't keep his eyes open
catching up with his sleep,but very fatigued,I just hope this is worth it last week he was sitting beside the pool in Cyprus looking like there was nothing wrong !
What a roller coaster this is never really knowing where you are with it .
The steroids state one twice a day so he's been having one at breakfast and one later in the day.
Thanks for giving me someone to chat to
Sue.

User

Posted 04 Apr 2015 at 16:51

That's strange our onc and chemo nurses said take both steroids at breakfast, if I were you I would ask if he can do this as it has worked for us. Maurice still gets tired and just this morning has got some sharp pains in in groin but nothing to bad. He was due second cycle on bank holiday Monday but they can't get the drug that day so next cycle is delayed to the 13 April. His psa dropped by half nearly from 82 to 47. Another psa test with other bloods next thurs before chemo. Sue you can chat to me anytime even send a private message and if you are on fb we can private message on there. Enjoy the Easter weekend and I hope things keep improving x

User

Posted 06 Apr 2015 at 11:12

Hi joy.
Day 6 everything settling down legs are a bit unsteady.
Did your oh have doxcataxel first (think the spelling wrong!
My oh had the full 10 cycles and it brought his psa down on every cycle but soon as the treatment finished it started to rise from 40 to 200 in a couple of months so I'm presuming it was not such a success so here we are now starting this cabazitaxel I'm hopeing this treatment may keep it at bay
sue.

User

Posted 06 Apr 2015 at 12:51

User

Posted 06 Apr 2015 at 14:14

My husband, Tim, is on day 14 of his second cycle of cabazitaxel. First week of first cycle he had the runs and then constipation this all settled and the second and third weeks he had more energy than he has had for a long time. PSA dropped from 20 to 9 before second cycle. Apart from feeling tired and having some loss of taste during the first week of this cycle he is now feeling good again and managing to get a lot done in the garden. We hope next Monday to find his PSA down again. He too has an injection to boost his immune system 24 hours after the chemo and takes a steroid morning and late afternoon.

Two and a half years ago he had 8 cycles of docetaxel before it became obvious it had stopped workin, he then had 6 months of Abi and then 18 months of Enzalutamide, this had gradually begun to stop working as scans showed slight increase in lymph nodes but spread to the peritoneal which was increasing. Apparently this is unusual with prostate cancer but a biopsy did show it was prostate cancer. We are hoping the cabazitaxel keeps working for a while because I think he has now run out of options apart from Trials.

It is good to hear how others are coping with cabazitaxel and compare notes!

Linda

User

Posted 07 Apr 2015 at 09:33

Hi ladies.
Day 7 only problem is can't sleep ! Finally went off 5am but still quite active so I'm putting it down to steroids .
My oh always took a small steroid dexametastone daily I'm wondering whether he should still
Be taking this now he's taking two of the new ones?
I suppose we will find out on next appointment. Chemo is due 22nd.
Joy I was on Facebook but not really my thing. Hope you both have good day.sue

User

Posted 07 Apr 2015 at 10:26

Wall, I don't think I would wait until next appointment to check out the triple steroid question. Could you check with the nurse specialist or pharmacist today?

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

User

Posted 07 Apr 2015 at 14:09

Hi sue I checked it out with the chemo nurses who then checked with our onc and the reply was yes take two with breakfast. Maurice has dexamethasone through the canula on day of chemo only. Hope you are both ok x

User

Posted 07 Apr 2015 at 16:22

Hi yes I have checked and needs to cut the dexametastone out
Hopefully all will settle down now!
Sue.

User

Posted 07 Apr 2015 at 18:59

That's good I hope things do settle for you, it does get confusing with all these different drugs and injections. I have to work out myself when oh hormone injection is due then order it and make appt for nurse to administer it. We have to have. Big calendar on the wall now and put everything on otherwise I forget. It's like a hospital here in the morning dishing up oh medication and then my dads, just need the nurse uniform.

User

Posted 08 Apr 2015 at 12:27

Day 8 we have to take 3 more tablets starting today for a week to stop any problems while the bloods are low.
Slight better sleep think tonight should be better.
Also new side effect today slight blurred vision!
Overall not too bad been playing boules in garden as it helps with balance as this time last year
In hospital with spinal cord compression so it's a huge improvement on last year😀
Hope you all enjoying this lovely weather.

User

Posted 08 Apr 2015 at 18:53

Maurice has in the last few days begun to get the aches again in his back, shoulder, and sharp pains in the groin. Not sure if this is because the chemo has been delayed a week due to the bank holiday. The blurred vision seems a strange one can't remember reading that one in the side effects, worth mentioning to the onc so they can add it if it is due to the medication.
Isn't it lovely to be able to spend time outside I am sure the sunshine helps us all. Keep well.

User

Posted 09 Apr 2015 at 15:22

As I mentioned earlier slight blurred vision ,
This morning eye very swollen also side of face is swollen looks like allergic reaction to me.
We decided to go to get it checked out ,they have put it down to eye infection so we came home
With eye drops !
Day 9.

User

Posted 11 Apr 2015 at 18:03

Well two days of eye drops and a cold flannel! All swelling and eye problem seems to be on the mend. Best two days so far since we started this treatment so I have to say we have had a couple of problems but will be discussed at next oncology appointment no major problems think he's set to have eight !
Day 12 .

User

Posted 11 Apr 2015 at 18:30

Phew - I do hope things settle down for him Wall, I think that after last year you could both do with a calm summer and some good results

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

User

Posted 11 Apr 2015 at 18:48

So pleased that the eye problem was sorted. Our onc has told us that Maurice will stay on the chemo until it stops working, no fixed amount of cycles. We are really hoping we get longer than other treatments. Next one Monday will keep you posted. Enjoy the rest of the weekend.

User

Posted 11 Apr 2015 at 19:00

Thankyou to all of you what have responded to my posts .
If you are like me you have questions and thoughts going round all day!
One minute I'm looking at first choice holiday website thinking about where we are going next
Then in looking up anything to do with this disease ! There is a lot of positive stories and Ray my oh
Has done great in the last four years. last year was the hardest but we have overcome scc which is a huge achievement but mainly to give anyone else positive thoughts if they ever face this problem
Thanks again for your replies.
Sue

User

Posted 13 Apr 2015 at 17:33

Maurice has just had his second cycle of Cabazataxel, it was a week late due to the bank holiday. The last few days he has had a lot of pain in his hips and legs. Base line psa was 82. Two weeks after first cycle it had dropped to 45, the blow me today we got the results from Thursday's blood test and it has risen to 77. When I questioned the nurse she said the pain maybe the chemo working and the rise in the psa is the cancer having a flare up due to being hit with the drugs. Still no side effects just fatigue. See the onc on the 28 April so will update after. Hope everyone is well x

User

Posted 13 Apr 2015 at 18:25

Tim had his third cycle today. His PSA has dropped to 6 so he was very happy! He has found that he has not felt that good the first week of the cycle but for the last 10 days or so he has had far more energy than he has had for ages, yesterday he was even laying turf!!. I think his 18 months on enzalutamide had really begun to zap his energy. He asked about when to take his daily two steroids as he hasn't been able to sleep so well and is finding his brain is far too active! The onco suggested taking one after breakfast and the second after lunch instead of late afternoon, if that doesn't work she saw no reason not to take both at breakfast time.

Linda

User

Posted 13 Apr 2015 at 19:10

Hi Linda yes Maurice takes his two steroids after or with breakfast. It's the weeing problem that keeps waking him in the night. Glad to hear your Tim is feeling better after the first week of chemo. What was his baseline psa?
Joy

User

Posted 13 Apr 2015 at 21:41

His PSA was about 20 when he started cabazitaxel, it had been slowly going up the last few months on enzalutamide but he waited until the scans showed the cancer was growing and also he wasn't feeling so good before going onto chemo again as now there isn't really anything else to go on except a trial. We hope this chemo will continue to work for a while longer, when he was on docetaxel a couple of years ago it began to stop working after 6 cycles, then his PSA went down from 80 to 3.

Linda

User

Posted 14 Apr 2015 at 07:19

Hi my oh was 700 when he started he managed the whole 10 cycles of docetaxel with results down each time the lowest we got was 200
As soon as that treatment finished the psa was on the up so three months later we are on this chemo.
Day 14 sleeping seems to be the biggest problem haven't had a decent nights sleep yet!
Legs were painfully last night as well.
We have been told 8 lots of this treatment and I'm hopeing it May last longer than three months.
Also radium 233 and abieratrone have been mentioned for future treatments.
Our appointment is Friday so may be a little wiser then,won't know psa results thou as bloods are done after this appointment but before chemo the following week!
Sue.

User

Posted 18 Apr 2015 at 09:48

First oncology visit since starting this treatment everything going as expected just
Had to mention the sleep problem so it's two sleep tablets before bed instead of one and what a difference ,hopefully a better nights sleep will help getting him through round two which is next wed.
Sue.

User

Posted 23 Apr 2015 at 23:56

Have joined in this thread which I hope you dont mind as Hubby Jacques started a course of Cabazitaxal yesterday.
If he can take it without too many problems, a course of 6 in 3 weekly cycles.with first review in two weeks to see how he is.
Due to the toxicity he was told he couldn't have it at home as had done last year with docetaxal when he managed 7 cycles. (Lucky to have medical insurance who have been brilliant agreeing to whatever Onco suggested.
Cabazitaxal given yesterday morning in Poole Harbour Hospital with no problem. So far day 2, no side affects at all except tiredness which he had already beforehand. Taking anti sickness tablets, and has stronger injection medication to hand if tablets dont work. Told to phone Community Nurse who will come and give it if sickness strikes. So far so good and he is now trying to sleep. Here`s hoping for a good night.. PSA test result yesterday was up in 3 weeks from 125 to 212. Hoping the cabaz will work well.. Good luck fellow Cabaz patients...

Edited by member 24 Apr 2015 at 22:59 | Reason: Not specified

User

Posted 24 Apr 2015 at 12:26

User

Posted 24 Apr 2015 at 16:26

Hi glad to hear things ok we gave just had second cycle a bit of a flare up again first two nights hopeing this will settle 😄keeping positive x

User

Posted 25 Apr 2015 at 17:35

Hi everything has settled again first good night sleep since cycle what is it that causes these first two nights to be so painfull? Someone said its the chemo attacking the cancer cells hopefully killing them is this true ?
Sue.

User

Posted 28 Apr 2015 at 22:42

Day 6 after first cabazitaxol cycle.
Jacques doing ok, hadnt really known quite what to expect but so far not as bad as with docetaxol last year (fingers crossed) Side effect are even more tiredness and weakness generally, but still managing to stay cheerful. Cold sore developed but zapped it with Zovirax cream which seems to have sorted it. Jacques appetite seems suppressed as feeling rather yucky but anti sickness tablets helping. Dizzyness today and low blood pressure which he feels is down to the heart tablets he is on so reduced dosage. Onco appointment next week. Heres hoping he will feel stronger soon,

User

Posted 29 Apr 2015 at 14:28

Hello everyone this is a strange journey for us. Just to recap. Baseline psa before first cycle of cabazataxel 82 and quite a few aches and pains.
Cycle one tolerated well no nasty side effects, no sickness, a little fatigue but nothing too bad at all. Aches and pains gone.
Cycle 2. Psa 77 This was a week late due to the bank holiday. The fourth week aches and pains returned and were really bad the night before the chemo especially in the hips. The evening of the chemo all pain gone so it is doing its job as far as the pain is concerned.
Visit to the onc last night to find out the blood taken yesterday morning shows psa has risen to 109. What he was as baffled as us. At present Maurice has no aches or pain and feels well, next chemo 11 May. Before treatment is changed and because he feels well onc is arranging another bone scan and ct scan and will decide where we go when the results are in. We see him on the 26 May. Another blood test will be done next thurs before chemo on Monday it will be interesting to see what has happened to the psa.
Hope everyone is doing ok will update soon
Joy

User

Posted 29 Apr 2015 at 20:43

User

Posted 29 Apr 2015 at 22:16

Thanks for keeping us updated Joy, there aren't many men on this drug on the forum so this is all good to know. Lovely to hear that the gold clubs are getting an airing, your OH sounds like a really strong chap.

Love to you both

Allison xx

User

Posted 05 May 2015 at 19:18

Just had 4th cycle. PSA down to 4.5. Last cycle Tim has felt well although days 6-10 felt a bit off colour and lost a bit of his taste. He has a CT scan next week and we see the oncologist the following week for results, we are then hoping all goes well for next cycle as we have booked a holiday to Jersey which we are both looking forward to as we lived there for 3 years in the 80's.

Linda

Edited by member 05 May 2015 at 21:13 | Reason: Not specified

User

Posted 08 May 2015 at 15:02

Hi linda hope all goes well for you,
And a holiday on the cards is great can I just ask you about travel insurance we do have some in
Place but just like to compare notes as we love our holidays and hoping to go Greece in September
But if we could get a sneaky one in whilst on treatment to Spain would be nice.
We have our hospital appointment later today so far things quite good on this chemo getting ready for 4tth cycle next week.
Kind regards sue.

User

Posted 08 May 2015 at 22:10

Sue, one reason we decided to go to Jersey was insurance, we haven't got any, of course we are risking if Tim isn't well enough to travel we lose a lot of the cost of the holiday. Once there we will feel happy that there are good medical facilities and also we have friends there. Originally we had wanted to go on a cruise but our oncologist was not happy about that as she said if Tim did get an infection she wasn't sure they would be able to treat him well enough whilst at sea.

I hope your hospital appointment went well today and all goes well next week.

Linda

User

Posted 09 May 2015 at 07:37

Hi linda
At the moment we have a annual policy with nationwide it cost £85 it includes
Prostrate cancer and a few other bits added on ie blood pressure etc.
We pay £10 a month into a flexi account to have this . I was very surprised at the low cost and
Rang them back several times to check!
Yes our appointment was routine psa not come down yet as only had two treatments but
Apparently that's quite normal my oh has had a numbness around his lip she said that's common to
Not due to treatment but bone pressure has anyone else had this?
Apart from that all ok we was told perhaps do 8 cycles now she's talking 10 !
Sue.

User

Posted 12 May 2015 at 13:40

Hi everyone. Oh had cycle 3 yesterday, however in two weeks the psa has gone from 109 to 169. Bone scan was done on Friday and ct scan is on the 20th. See onc on the 26 for results. As usual all aches and pain has disappeared after chemo and still no nasties. We both think the onc will stop now due to the rising psa. I also heard the nurse talking to onc yesterday asking should she go ahead with the denusomab injection has his calcium was 2.3. This seems a little low but can't find anything on Google, everything seems to be about high calcium levels. Well more waiting and worrying. Hope you are all doing well
Love to all joy xxx

User

Posted 14 May 2015 at 12:34

hi everyone cycle three yesterday and no pains or anything this time my oh usually has two painfull days then everything ok but this time nothing he sat there last night waiting for something to happen! Fingers crossed x hope everything is going well for you.
Sue.

User

Posted 21 May 2015 at 19:59

Just back from consultation with onco prior to 5th cycle and after CT scan. All results are really good, the cancer round the kidneys and various other places in the peritonium has shrunk and all the lymph nodes affected have also shrunk. His PSA had also dropped again by another 25% to 3.8. We know that this is just one step on the rocky path but hopefully it will allow us to have a relaxing holiday in Jersey next month!

Linda

User

Posted 06 Jun 2015 at 17:32

Hi just had fourth round of chemo at the moment bloods seem low so going for
blood test Monday to see if it has dropped again,possible blood transfusion but not sure yet
Day four of treatment but very tied and ache in arm which has put my oh in a bad mood as things
Are generally good still never mind !
Take care .
Also can't think they were too low as he had his treatment ?

User

Posted 06 Jun 2015 at 19:52

Well after suffering all day with this arm ache/ pain and feeling rubbish
6pm tonight all aches and pains gone 😃 what a roller coaster this is !

User

Posted 07 Jun 2015 at 10:15

Sue

It certainly is a roller coaster ride in every sense imaginable!

Glad your OH is through 4 treatments now, they would not have proceeded if his blood work was out of limits.

The arm aches are a common SE, well aches anywhere are to be honest.

If his bloods are a bit low in areas they nay give him a transfusion of red cells or plasma these really do give a boost to well bring for a while and can be repeated fairly regularly. Is your OH having Zometa or Denusomab to try and provide bone strength?

Make sure you take good care of yourself as well.

All the best

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