Journey begins with Cabazataxel

User

Posted 07 Jun 2015 at 10:44

Which arm Sue? Don't forget that the signs and indicators that he experiences might not always be to do with the prostate cancer ... If that was a pain down his right arm with tingling fingers or lips, it might be a good idea to speak to the GP in case it was his heart?

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

User

Posted 09 Jun 2015 at 17:34

Hi all I am a little late posting as we have had an eventful few weeks. Results of ct scan good shows no soft tissue or organ involvement. Bone scan however shows progression with a large deposit on the left hip and femur. Also urine problems getting worse. Oncologist arranged appointments with orthopaedic specialist and urologist.
The orthopaedic guy says no pins needed yet but will see us again in two months.
The urologist however was a little different. Three attempts at the flow test, scan showed 450 ml in the bladder but the best output was 25 ml. Going in on the 26 for a Turp procedure. Downside the chemo has to be stopped for a while because of increased risk of infection, and the chemo definitely helps with the pain. Last psa was a slight inc from 169 to 173 so goodness knows what it will do without the chemo. Praying and hoping the Turp goes well.
Hope everyone else is doing ok. Take care all joy

User

Posted 09 Jun 2015 at 20:02

Hi I had TURP 2 years ago this month, in hospital just for 4 days. A few minor issues, it made such a difference for me as I had a catheter in for 6 months.

Hope it goes well for you, Arthur

User

Posted 09 Jun 2015 at 21:26

Thank you for that hubby is worried but when he asked if he would be incontinent after he was told very unlikely but if they didn't do it he would because the bladder would overflow. Did you need pads for long after.

User

Posted 10 Jun 2015 at 11:27

Hi

Fortunately only for a few days, I got a stock of pads in via the district nurse but didn't need them in the end.

Arthur

User

Posted 10 Jun 2015 at 13:00

Joy
when Mick had his TURP he was retaining about 200ml of urine all the time and that was cuasing infections, he was due to go in for his biopsy at the time so the urologist decided he would "fit him in" for both procedures at the same time. He went in at 7.30am but did not get to theatre until nearly 5pm as there were one or two surgical emergencies which bumped him down the list. However he had the procedures done under a spinal block anaesthetic was back on the ward (complete with catheter) about 90 mins later tucking into sandwiches and a cuppa. They kept him in overnight to flush fluids through and check his output, By mid morning the next day they declared his urine was relatively blood free and removed the catheter. He had to drink another load of water so that they could be sure he would empty his bladder fully when he did pee which about lunchtime. They checked volume and did a bladder scan with a litttle hand held scanner. Then he was discharged. He was a bit sore from the biopsy and every now and then over the next 5 dyas or so he would have a little bit of clotted blood pass in his urine which he had been told to expect.
He had no leaks, mishaps or any other urinary issues in fct he was back to pre PCa Mick for a while. If his cancer had not been so aggressive and if he had responded to any treatment at all I am sure that TURP would have made him feel much better for a long time.
Hope all goes well for your OH and soon so that he can get back to his chemo.
By the way PSA often rises immediatey after a TURP as the cancer does not like anything in what it considers to be home territory.

best wishes
xx
Mo

User

Posted 10 Jun 2015 at 14:22

Thank you Arthur and mo for the replies they both sound very promising. It was quite a week last week after the urologist Maurice wanted a macdonalds strawberry milkshake as he can taste those normally after chemo messes his taste up. Well in macs they have some chairs with stupid legs that stick out into the aisle and he went flying, I was so scared that his hip or leg was broken especially after talking to the othopeadic guy, but all was well just a few bruises for him and a thumping heart for me. Take care both of you and once again thanks

User

Posted 10 Jun 2015 at 14:34

Joy

My experience whilst in hospital, apart from the couple of extra days I stayed in was very similar to Mo's post regarding Mick. Hopefully it will follow a similar pattern for your OH. I remember me and someone else desperately wanting to wee so we could go home but they wouldn't let us out until we'd "been" !!

Arthur

User

Posted 15 Jun 2015 at 23:01

Tim had his 6th cycle today. His PSA was down a bit to 3.3, a smaller drop than previously but still going in the right direction. His onco says she hopes he will be able to have 10 cycles. He certainly doesn't feel too bad with this chemo. Days 4 to 9 he feels a bit grotty and loses his taste a bit but after that he has felt fine. His main problem is sleep, he goes to sleep but wakes at 4 or 5 and can't get back to sleep as his brain begins to think of all sorts of silly things he has to do! We managed to have a lovely 10 days in Jersey, weather was brilliant and I think it did both of us good.
Joy, I am sorry that Maurice has to have a break from the chemo whilst he has a TURP, I hope all goes well with that and it's not too long before he can go back on the chemo.
Linda

User

Posted 21 Jun 2015 at 14:07

Hi linda nice to hear you had a nice holiday.
It seems are journey sounds similar to yours with the disturbed sleep but bearing up quite well
We are having a break from treatment number five and going to Greece for two weeks we feel while all is well we are going to try and balance this roller coaster with a bit of normality
The oncologist agrees with our views so we are off Tuesday .
Take care everyone. Sue.

User

Posted 21 Jun 2015 at 22:19

Sue, glad to hear you are we to get away for a holiday. Have a good time, it is so good to get away from it all for a short time. Tim at the moment is following the same pattern of the cycles with at the moment feeling a bit woozy and a slight loss of taste. Keeping a daily record of how he feels really seems to show how predictable he will feel during each cycle. He seems to be enjoying getting up early in the morning now, I hope it doesn't become a habit!! I think if it was winter he would not enjoy the early mornings so much!!
Enjoy your holiday. Take care.
Linda

User

Posted 30 Jun 2015 at 13:34

Hello all. Well hubby had the turp procedure on Friday and was home on Sunday. He is doing really well and says the pain was so worth the gain, weeing properly again and hardly any leaks. Next chemo is on Monday providing the alp levels are ok after blood test on Thursday. The urologist said he could not believe that he could wee at all it was so constricted. Onwards and upwards. Hope you are all doing ok xxx

User

Posted 30 Jun 2015 at 17:35

Good news joy great to hear.
Xx
Mo

User

Posted 02 Jul 2015 at 07:29

Hi we are in Greece but from day one aches/pains in legs are making this holiday a struggle for my oh also I think early on in this holiday he picked up a water infection as his balance slightly strange behaviour and darker urine? With all the water we are drinking that seems to have cleared as at one point I was on the verge of coming home,things have improved but every night awake around 1am legs are terrible with aches pain killers don't seem to work he needs something stronger so will
Have to ask next Friday at appointment ,
Sue.

User

Posted 06 Jul 2015 at 20:10

Sue I hope you managed to enjoy the rest of your holiday, I hadn't noticed you had posted that all was not so well until today. Tim had his 7th cycle today, his PSA has risen very slightly to 3.7 but our onco doesn't seem too concerned. His main problem has been blood in his wee more frequently during the last cycle, hopefully this is more to do with the chemo affecting his bloods rather than increased cancer growth. Next chemo is in 4 weeks as we have a family wedding on 1st August so Tim wants to feel well for that, if he had the chemo in 3 weeks that would be the exact time he feels woozy and loses his taste.
Joy, hope the chemo went ahead OK today.
Take care everyone
Linda

User

Posted 07 Jul 2015 at 14:30

Hello all
Yes Linda the chemo went ahead yesterday thankfully has he was getting aches and pains in neck shoulder and strangely behind his eye. At 7.00pm last night he said the aches and pains had gone but, when we went to bed his leg began to ache so badly he went downstairs so as not to keep me awake. I was so cross when I woke at 6.30 and he tells me he was up until 4.30 and had took quite a cocktail of pills tramadol, cocodamol and ibuprofen.
Sue I am thinking the same we need to get something stronger for these emergencies. The turp procedure has really helped tremendously with the waterworks though so much he said it is life changing.
Love to you all xxx

User

Posted 04 Aug 2015 at 10:51

Chemo number 8 done yesterday. Blood tests show Tim's PSA up to 5 so is this the end of Cabazitaxel and what next?! Having a CT scan Friday and seeing onco next Thursday for result before she goes on holiday. It is such a pity the PSA is slowly rising as he has not felt too bad on this chemo and as we went 4weeks before this one so we could go to a wedding he has had 2 weeks of feeling really good.

User

Posted 05 Aug 2015 at 10:54

Hi we missed one to go on hols psa went up but as I mentioned before it's the bloods what are playing up .we have had one more chemo and psa was down which is great but the bloods are dropping which is having a huge effect on my oh he's struggling to put one leg in front of the other yes he does have the odd times during the day when he's not to bad but I'm wondering if this is what it's going to be like until the treatment stops he's due 2units tommorow and chemo no6 next week . He's blood yesterday was 80 I believe which is very low but not as low as before so I'm wondering if gradually it can be built up and his strength shall return.
Fingers crossed. Sue

User

Posted 12 Aug 2015 at 21:49

Hi just had chemo 6 and we was told 6-8 was the norm
Since chemo 4 bloods have been low as I mentioned before but since this has been happenng and we are experiencing low appetite which has been a new side effect even though my oh appetite is poor he has been eating regular but he is losing weight all his has been happening since the low bloods , the chemo is still working thou just wondering if any similar experience out there.
Sue.

User

Posted 15 Aug 2015 at 18:54

Results of scan were mixed. Most areas were still showing a decrease in the cancer, however one lymph node and an area around one kidney had increased. Our onco said this showed that cabazitaxel was still working however some of the mutated cells weren't responding. In fact when Tim had a biopsy from around the kidney before starting cabazitaxel she had said it was mainly the common prostate cancer with a few cells of another type, at the time we hadn't taken in all in and these other cells were small cell. Her plan is to go ahead with number 9 and as long as things are still stable number 10, then to have a rest and maybe have chemo for small cell. This is making things seem even more scary but while he still feels so well we have to make the best of it and hopefully we will still be able to get away for a while at the end of September.
Linda

User

Posted 17 Aug 2015 at 09:58

Hi what a weekend!
My oh was admitted to hospital Friday possible infection but all results are inconclusive?
Fast heart rate Anemia breathing quicker than usual very confused all the signs of infection?
He has been on antibiotics since being admitted and may come home today but he is very pale as his bloods have been so low since chemo 4 wondering what will happen now very worrying time 😂
Sue.

User

Posted 17 Aug 2015 at 10:43

Hello all
We are off for chemo no 7 today. Oh psa was up last time, but they have a new machine so onc says he needs a trend from this machine now. His bloods are also on the decline so he has to have 2 units of blood. He is more tired now and very pale. We had asked if he could skip a treatment so we could go to Portugal but rethinking now because the week before chemo the aches and pain return. Seems that this chemo helps with pain but not much else. Will find out results today from last blood and when the transfusion is going to be done. They say he will feel a lot better after. my thoughts are with you all love and hugs to you all xxxx

User

Posted 17 Aug 2015 at 11:56

Thinking of you all.
Seems you're all going through a rough time of it.
Hope there is some improvement and your other halves feel better soon.

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

User

Posted 17 Aug 2015 at 16:54

Back from hospital with my oh he looks a lot better it seems the bloods are the problem whilst trying to get through this chemo I'm wondering if we will move on to abieratrone as we are having problems. Like you mchjoy we skipped the treatment and went to greece with low bloods and it proved to be the wrong thing to do . They have put sepsis on his notes or progression but not sure which one has caused this very worring weekend but he's home walking about and eating😃
So hope it improves.
Sue.

User

Posted 17 Aug 2015 at 17:14

Sue glad your oh is home and looking better, I hope he continues to improve.
Joy I hope chemo no 7 went ahead OK. Hope he gets his transfusion and this makes him feel better.
It is strange how the chemo affects people in different ways. Tim has really had no problems with this chemo unlike when he was on docetaxel which made him feel iller and iller every cycle.
Thinking of you all
Linda

User

Posted 17 Aug 2015 at 19:30

Hi all the chemo went ahead today and the transfusion is on Wednesday hoping this works as he has looked so pale lately and much more tired, so fingers and toes crossed. So glad your oh is home sue and feeling better. I will post when the transfusion happens and let you all know how it goes. Stay strong and well xx

User

Posted 22 Aug 2015 at 17:16

Hi joy it seems we are on a similar journey the bloods seem to be getting in the way .
Our oncology appointment is next Friday but will have to keep an eye on his colour etc,
When they discharged my husband they said could be progression or septis ? I don't know where I am if progression would he have picked up? Which I think he has by looking at him but he says he feels lousy ! He as no energy ? I have family but you don't want to worry them with this roller coaster but you just don't know what to expect when things are low!

User

Posted 15 Sep 2015 at 21:23

Well Tim's journey with cabazitaxel is over he didn't have no 10 as his PSA has doubled in last 2 months. His onco has decided he needs a couple of months or so with no chemo and then maybe she will give him chemo for small cell. When he had a biopsy on the growth in his peritonium a few months back it showed there were a few cells that had mutated to small cell. He goes for another blood test and CT scan in a months time and we will go from there. He is being so positive, I wish I could be the same! We have just managed to have 10 days holiday in Majorca which we both thoroughly enjoyed and Tim felt so well for the whole of the holiday. He really has been so lucky that cabazitaxel has made him feel so much better than he has for a year or so, what a pity that it had to come to an end.
Will update when new treatments start.
Linda

User

Posted 16 Sep 2015 at 00:12

Hi Lindy,
so sorry that they have confirmed small cell now although I guess it explains why Tim never really had any impact from the different hormone treatments. On the up side, he copes well with chemo and perhaps the next lot will give him another boost and you will get in more holidays and sunshine x

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

User

Posted 18 Sep 2015 at 21:44

hi Lindy,
I've just seen this, I'm so sorry that the chemo had to stop but as Lyn says, your Oh seems to do well on chemo so the type they use for small cell may be beneficial to his well being too. Is there any chance you can get away to the sun again before the next lot starts? It sounds like it would do you both good and why not?

Lots of love
Allison xxxx

User

Posted 19 Sep 2015 at 11:09

Well I think our chemo journey is coming to an end too.
We have just had chemo 7 which had been diluted
Our choice was this or Enzaltumide
After chemo 6 my oh had a very bad reaction and was in hospital for the weekend the doctors was not sure what was causing the problem.but it seems it's the chemo and not the cancer.
After several blood transfusions we started chemo again
day two of this cycle and not such a good day so I'm keeping close watch.
Sue.

User

Posted 25 Sep 2015 at 13:38

Hi day 8
All is well 😀 not quite as tied so I'm presuming bloods are not so low as before.
It seems my oh is doing ok then out of the blue especially at night if has a bout of pain and ache in both legs this last upto six hours and he finds it nearly uncontrollable?
Has anyone else had this we are not sure if it's the meds but it's strange how it just comes on I describe it as a women in early labour where you can't settle? I've mentioned this at our appointments but with no conclusion ? Sue.

User

Posted 25 Sep 2015 at 21:05

sue
I tried checking your profile, when was the last time your Husband had any scans, MRI CT scan etc?
Chemo can do some odd things, I know how scary it is when the blood results come back and cell counts are ridiculously low. I also know a little bit about the pain that can be caused by so many different things.

The pain in his legs could just be down to the chemo or HT or a calcium problem but I would ask you to look out for any additional changes like outbreaks of sweating not a hot flush but dripping sweats, sudden weakness in the limbs, what appears to be constipation but is actually an inability to physically go to the loo. Urine output slowing right down . Most of these can be put down to chemo or HT but they can also be signs of a more serious problem like a spinal cord compression. I am paranoid about them so as I have said to others before you, I do not want to scare you but just to warn you of what to look out for just in case.
If any of them manifest call your chemo team or out of hours support team (listed in your Chemo booklet)and tell them that you fear an SCC. They will check things out with you and act appropriately

SCCs are relatively rare thank goodness.
xxxx
Mo

User

Posted 25 Sep 2015 at 22:24

Hi mo
Thanks for your reply you do seem to explain things well😊
I haven't done a full profile but quick recap
Diagnosed four/ half years ago with bone spread psa was1000
They still refer to it as just bone spread no other areas don't know if that's been in our favour.
First two years iplants and not any problems then eighteen months ago scc it took us twelve months to get back to some normality my oh had to basically learn to walk again
I look for all signs as I'm very wary.
After ten cycles of chemo a small break but psa started to rise so further chemo this time the chemo is stronger and been harder to take bloods started to drop so several blood transfusions and diluted chemo again as it has been working.thats where we are at the moment it's cycle eight
and things aren't to bad apart from these odd bouts which are worring
I'm presuming if blood levels were showing any problems calcium etc that would have been mentioned,
It has been a constant worry as for the first time my oh has liost weight his appetite is smaller but I think he is still eating well to maintain weight .
Thank you again for your reply x psa is now 300 plus.

User

Posted 26 Sep 2015 at 11:43

Sue
forgive me only going on your profile but sometimes going back through posts and threads can be really difficult. I had no idea you are no stranger to SCCs poor you.

Calcium and Potassium (and a few other iums) should be tested for every time chemo or blood transfusions are done so yes they should have been picked up if there was an issue. However they can rise or fall pretty quickly so being aware of the symptoms of too much or too little of them can be handy. As your OH is in current chemo treatment the frequency these are checked should be sufficient.

The fact that your Husband has already had an SCC may be a contributory factor to his leg pains if his lumbar spine area was treated post SCC then this sometimes can cause the legs to spasm, cramp and hurt. Maybe the chemo is just bringing that on. Although my Husband Mick was not able to stand or walk after his first SCC he could still wiggle his toes and had some feeling in his legs. The nurses at the hospice swore he played football at night in bed because, despite being in a great central position at bedtime, in the morning his legs would often be as far as way from centre as possible. Having observed him for a while I noticed that he had what looked like resless leg syndrome. He had no idea he was moving his legs, it was a form of muscle/nerve spasms.

I would definitely mention it next time you see the medical team as if he is not already having nerve pain/spasm medication like Lyrica they may try that for a while to see if it helps. I also found that putting a pillow under Mick's knees when he was laying down also helped a little.

So many different things that can happen and no man seems to have an identical journey with this horrid disease. I think sometimes it even confounds the specialists!!

All my best wishes
xx
Mo

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 02 Oct 2015 at 21:08

Hi all well I started this thread and now the journey has come to an end. I have tried to write this for the last couple of days. Maurice has had two transfusions the last one last Friday. However the platelets have dropped like a stone. He is having a platelet transfusion at this moment. He has had bloods done every day this week and has so many bruises appearing from nowhere. He has also developed severe pain in his upper abdomen and can't keep even water down. The oncologist told me today that the drop in bloods is cancer driven because the bloody cancer is in his bone marrow. He told us to be prepared for a rapid decline. God I never expected this and it has all happened so quickly. He has always been so positive and so brave.
Love and God bless you all xxxx

User

Posted 02 Oct 2015 at 23:30

Joy I am so very sorry to read your post - spread into the bone marrow is not common. I hope that they can get the pain under control as quickly as possible and that your lovely man has peace and comfort in this final stage. You have been so strong and matter of fact up to now - don't forget to look after yourself while you look after Maurice and everyone else.

You are on my mind xxx

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

User

Posted 03 Oct 2015 at 07:29

Thank you lyn. I am so scared to see him like this is awful he has always been my rock. I nursed my mom with pancreatic cancer and it was horrible and so not peaceful. I will be fighting all the way for him, but God only knows where the strength is going to come from. Still can't believe he will leave me, we have been together a lifetime. Xxx

User

Posted 03 Oct 2015 at 13:02

Joy, so sorry to read this about Maurice. Do take care of yourself.

Thinking of you.

Linda

User

Posted 03 Oct 2015 at 14:30

Joy, so sad to read your post .
Thank you for starting this thread it has certainly helped me get a few things off my chest when the going has got though.
we are strangers but I'm thinking of you.
Sue

User

Posted 03 Oct 2015 at 14:39

Joy
I am really sad to read your update, I think deep down there comes a time when we all realise the fight is drawing to an end. I know just how you are feeling right now so whatever happens do not beat yourself up for wishing it to be over so that Maurice can go in peace. You have been his rock for so long now.
You will be in my thoughts and as Lyn has so rightly said make sure you look after yourself.
My biggest hugs
Xx
Mo

User

Posted 04 Oct 2015 at 20:28

Dear Joy
I haven't been on for a few days and feel dreadful to have missed this. I am so sorry to read this awful news. I think strength comes from somewhere and it's obvious you have it.

My thoughts are with you, I pray that Maurice gets every care during these last days. No words are enough in these situations, just know that we are with you in spirit .

With love
Allison

Notification

Join the online community now.