Journey begins with Cabazataxel

User

Posted 08 Apr 2015 at 17:53

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 14:22

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 17:03

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 17:30

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 17:48

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 18:00

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 16:33

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 17:25

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 18:10

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 20:41

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 06:19

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 08:48

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 22:56

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 21:59 | Reason: Not specified

User

Posted 24 Apr 2015 at 11:26

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 24 Apr 2015 at 15:26

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 16:35

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 21:42

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 13:28

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 19:43

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 29 Apr 2015 at 21:16

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

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