Journey begins with Cabazataxel

User

Posted 19 Sep 2015 at 10:09

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 12:38

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 20:05

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 21:24

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 10:43

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 10:49

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 20:08

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 22:30

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 06:29

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 12:02

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

Thinking of you.

Linda

User

Posted 03 Oct 2015 at 13:30

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 13:39

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 19:28

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

User

Posted 05 Oct 2015 at 08:26

The fight has been fought and he was brave and dignified to the end very peaceful. Love to you all keep fighting this bs....ted xxx

User

Posted 05 Oct 2015 at 08:58

I am so sorry for what you have been through and are still going through.

thinking of you at this sad time.

Alison xx

User

Posted 05 Oct 2015 at 09:43

It must be shocking for you that the end came so quickly Joy but perhaps in time you will feel some comfort that it was not more drawn out. I hope at the least that Maurice was more comfortable than your mum had been? Look after yourself in the coming days, weeks and months as you run around organising everything and then begin to find a new life without your rock.

Sleep peacefully, Maurice

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

User

Posted 05 Oct 2015 at 14:02

Joy - we don't know each other but I feel so sad for you.

Je suis désolé.

David

User

Posted 05 Oct 2015 at 18:06

Hi I've not kept up with your thread as I am not at that stage. But I have read it now.

I am so sorry for your loss. You were there for Maurice all the way and couldn't have done anymore.

Thinking of you

Bri

User

Posted 05 Oct 2015 at 18:49

Such sad news. RIP Maurice

User

Posted 05 Oct 2015 at 20:14

Joy
I am deeply saddened to hear this news and I am so sorry for your loss.RIP Maurice.
Please take good care of yourself at this most difficult time in your own life.

All my biggest hugs are on the way to you.
Xxx
Mo

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