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From Enza to Cabaxitaxel, an update

User
Posted 09 Jun 2016 at 13:45
It's a while since I've posted here, as we've had an eventful and somewhat unsetting few months.

Tony started on Enzalutamide last November. Despite an early course of Docetaxel, which had ended in April, his PSA had started to climb again by July, and was rocketing in October (from 18 to 130 in a month), with aches and pains starting again. At first the Enza worked really well - the pains stopped, PSA dropped dramatically to less than 4, and we were able to enjoy a happy family Christmas. But by February, PSA started to shoot up again.

Our onco suggested trying the Royal Marsden to see if there were any suitable drug trials. This was a big undertaking, as we live in Devon, but Tony was prepared to give it a go. He was tested for the BRAC gene, which would have made him a good candidate for the olaparib trial, but doesn't have the gene. He was also being tested for another trial, but by this time his blood counts were too low and the cancer in his bones developing too rapidly. All this took a couple of months, during which time his PSA shot from 32 to 168. The Royal Marsden recommended, and our onco agreed, that he should start cabazitaxel asap, and within a week of this, he had his first infusion (yesterday). The good news is that despite the extensive and aggressive bone mets, there is still no significant lymph involvement, no sign of SCC, and his liver and other organs are clear. He is tired and his joints are stiff, but the pain hasn't returned.

So we're off on another stage of treatment. Tony will have cabazitaxel for up to ten cycles, or for as long as it is tolerable and beneficial. He's also having Zometa infusions now. So far he feels OK and is currently outside, working at his beehives. All the rules on hygiene and diet are having to be attended to once again, which is a bit daunting and socially limiting, but at least there will be a pattern to the treatment now, and after a couple of cycles (if it's working) we will know what to expect and be able to plan around it. We hope to have some good times yet.

Marje

User
Posted 15 Jul 2016 at 21:57

Thank you all so much! I can't tell you how much it means to get supportive messages from women who have been, or are still, in a similar position.

The blood transfusion seems to have gone OK. Tony looks pinker already. Do you know what he said on the way home yesterday? "If this blood transfusion gives me a bit more energy, I think I'll ....... pressure-wash the patio!" I hooted with laughter and said, "So that's top of your bucket list? " It was like a line from a script by Victoria Wood or Alan Bennett. ("I may be not long for this world, Mavis, but I'll leave a clean patio when I go!")

Anyway, the chemo is fixed for a week today. In the meantime, Tony intends to eat a large chunk of Blue Stilton ("Sod the dairy-free diet, I'll eat what I like now!") as blue cheese is banned during chemo. I couldn't care less about the weeds on the patio, which is precisely why he wants to tackle them while he can, but hopefully we will soon have some pleasant outings and good times with friends as well.

We have some serious stuff to talk about too, and I'm sure that will follow, but it needs to be at a time when we both feel strong enough.

Thanks again, all of you. I'll keep in touch.
Marje

User
Posted 21 Jul 2016 at 18:40

Marje (piglet), Glen, Lesley (Harmony) and Max

I'm so sorry to hear your latest updates about Tony, Phil, Bob and Kev. I'm a little behind them but I'm on the same road as your OHs. I hope for them what I hope for myself, that is that there will be good days to counter balance the bad ones before the end comes.

David

User
Posted 11 Jun 2016 at 15:31

Yes, I was thinking about you, Glen, because we expected Radium 223 to be the next step, and then the RM and our onco said that Cabazitaxel was the better option.

So far, Day 4, Tony has very little reaction to his first infusion. No sickness or diarrhoea, just feeling a little achy last night but paracetamol sorted that. He has to give himself an injection of G-CSF the day after the infusion, to boost his immunity, but even that was not as daunting as it sounds now he's been shown how to do it. (This may be what caused the achiness at bedtime). He's still enjoying his food, and had a glass of wine last night. So far so good ....

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User
Posted 09 Jun 2016 at 16:49

Great to hear from you and it sounds as if a good plan has been worked out. Really hope the chemo is bearable and more importantly that Tony's PSA and general well being improves. Good luck on this next leg of this journey.

User
Posted 09 Jun 2016 at 20:21

My husband is in the same position as Tony. He was on Enzo which has now failed and is waiting to go onto Cabazitaxel. Unfortunately he cannot get Cabazitaxel until August as we live in Wales which has no cancer drugs fund. It has been approved by nice but takes 90 days apparently to become fully available. My husband is having his holiday first then going on Docetaxel again but at a low dose and weekly until August and Cabazitaxel. Will be thinking about you and hope it goes well for you both. Would be great if you could Let me know how Tony is getting on with Cavazitaxel.

Max

"You can only play the hand you're dealt"

User
Posted 09 Jun 2016 at 21:04

Good to hear from you, Max, I was wondering whether there was anyone currently in the same position. I'll certainly report back, and wiill be interested to hear how you get on.

Marje

Edited by member 09 Jun 2016 at 21:05  | Reason: Not specified

User
Posted 09 Jun 2016 at 21:10

Great Marje. Will keep you posted.

Max

"You can only play the hand you're dealt"

User
Posted 09 Jun 2016 at 22:22
A worrying time for your families. Thinking of you

Devonmaid xx

User
Posted 11 Jun 2016 at 15:12

Very worrying times and thinking of you. My OH has recently had Radium 223 failure (after Docetaxel and Enza failure). Awaiting to find out if eligible for Olaparib (TOPARP trial) and in the meantime on Casodex as a temporary measure. If not suitable for trial then I'm guessing it will be Cabazitaxel like you. So worrying.

Glen

User
Posted 11 Jun 2016 at 15:31

Yes, I was thinking about you, Glen, because we expected Radium 223 to be the next step, and then the RM and our onco said that Cabazitaxel was the better option.

So far, Day 4, Tony has very little reaction to his first infusion. No sickness or diarrhoea, just feeling a little achy last night but paracetamol sorted that. He has to give himself an injection of G-CSF the day after the infusion, to boost his immunity, but even that was not as daunting as it sounds now he's been shown how to do it. (This may be what caused the achiness at bedtime). He's still enjoying his food, and had a glass of wine last night. So far so good ....

User
Posted 01 Jul 2016 at 23:22

So .... today was to be Tony's second chemo infusion, but his platelet count is too low, and it's been postponed a week. His PSA has gone up again, to 260, but this is probably less than it would have gone up without the chemo. Apart from that, the main problem is anaemia, which is making him weak and lacking in energy - he can't walk far or fast without getting out of breath. His white cell count is good, so the injection of G-CSF must have done its job. He still has few side effects and is enjoying his food and drink.

So he's too ill for a chemo infusion, yet not quite anaemic enough yet for a blood transfsion. All we can do is make the best of it - we had a good evening with friends, having fish and chips and beer, and arguing about Brexit. We managed a nice four-night trip to Dublin last week and explored the city at a leisurely pace. We just have to live in the moment and make the most of each day as it comes - something which I know many people here will understand.

Any news about the olaparib trial, Glen? Sorry if you've reported this elsewhere, it's difficult to keep track of all the threads.

Thank you for all your kind support, and best wishes to all who are facing a similar situation.

Marje

Edited by member 02 Jul 2016 at 10:56  | Reason: Not specified

User
Posted 02 Jul 2016 at 09:52
Hi marje

Lovely to see you and hubby are able to have some happy times with friends despite the ever continuing difficult times.

Hoping bloods improve so he can continue the cabazitaxel course.

Take care

Lesley xx

User
Posted 02 Jul 2016 at 10:57

Hi Piglet, we're not far behind you, my OH's first Cabazitaxel infusion is on Friday 8 July, and he has blood transfusion on 4 July as Hb down at 8.1. He is very tired and achey, but he has now stopped taking Casodex as doing no good so hoping pain will ease off. Hard times, but we have to bat on and tackle the immediate threats.

We've got some caravan hols booked in so stuff to look forward to but he's had to drop out of his Scotland motorbike trip as parts of the route too remote if he needed urgent medical help...he's not pleased!

 

Take care.

Glen

User
Posted 02 Jul 2016 at 11:14

I'll be thinking about you next week, Glen, as Tony's second infusion is (hopefully) on the same day. Hope it goes well for you both. A blood transfusion will probably perk him up considerably - Tony's Hb this week was 9 point something, which is low enough to be quite incapacitating but not quite low enough for a transfusion.

A caravan holiday sounds a good plan, as you can just take things easy and please yourselves. I can see what you mean about going to remote places - that was why Dublin seemed a sensible choice to us, because it's a city with hospitals and access to healthcare, and they speak English. We do have travel insurance that's still valid, but that's not a great deal of help if you find yourself with a suspected neutropoenic infection many miles from anywhere. You still need to be able to get to hospital quickly.
Good luck with this next step!

Marje

User
Posted 15 Jul 2016 at 09:51

Another update: Chemo had to be postponed again because of low platlets.

Then yesterday we saw the oncologist, who confirmed that the cancer has now spread to the bone marrow. Today Tony is having a blood transfusion, as he's very anaemic, and next week another shot at the cabazitaxel (nearly 6 weeks after the first). This is somewhat risky now because of the platelets, but it's the only thing that might slow the cancer down a bit. It may well do nothing at all, but he wants to give it a try.

Other than that, we are running out of options. Radium 223 is no longer a possibility. Abiraterone might be available but is very unlikely to work now. The palliative care team, based in our local hospice, are to get in touch soon to help with pain management.

The prognosis? Less than a year, possibly only a few months. We knew this all along, but it's still upsetting to have it confirmed. And yes, we know that this is not definitive, but we can see how this cancer is developing, and there is simply no effective treatment now that will do much more than relieve some of the symptoms. None of Tony's treatments so far has been effective for anything like as long as we hoped, he just seems to be on a fast track to the end. This cancer is a brute of a thing.

We are hoping that the blood transfusion will give Tony a bit more energy and a better quality of life so that he can enjoy the summer (in between his various appointments, tests, and treatments!).

Marje

User
Posted 15 Jul 2016 at 10:02

Oh Marge, I am sorry to read your update. As you say, there are some men whose cancer just seems determined to overcome any treatment offered. I hope the blood transfusions (i imagine there will be a few all told) bring him enough bright days to have a happy summer

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

User
Posted 15 Jul 2016 at 10:16

Hi Marje. Sorry to hear you are having such a rough time. I think Tony and Kev are very similar. We have had a reasonably okay three years despite the treatments, but the last six months or so have been a gradual decline. We are in Wales so Kev cant have Cabitaxel until August. He was due to have a low management dose of docetaxel weekly from Monday last but he wasnt strong enough. Like Tony he is very anaemic and was in hospital a few weeks ago for a blood transfusion and fluids. His onco has put him onto steroids to improve the anaemia situation and is hoping for the first cabazitaxel on August 1. We recently had a nice week in Spain but have had to cancel other booked holidays.
Kev has been like Tony and his treatments have also been short lived. He got the longest on Enzo but psa and alp now shooting up. Radium 223 I believe, is also not an option for Kev as he has chest lymph mets now.
Like you, I am finding it very difficult to see him so poorly and hope both he and Tony are fit for treatment soon. Thinking of you.x

Max

"You can only play the hand you're dealt"

User
Posted 15 Jul 2016 at 10:23

Oh Marje my heart sinks reading this as it is where we were last year. We too had very short lived results with each treatment. At least your oncologist is still looking at different options and I do hope they help. The blood transfusions did make a difference to David, the best thing being that we had a good Christmas. He had about another 6 months with regular transfusions. I don't know what your arrangements are for cross matching etc. We had to go to the hospital for this - a 45 minute drive - which David found exhausting especially when he had to do it again the next day for the blood. Our district nurses then started to come in to do the weekly bloods which did help. So do look at the local options to conserve a bit of of energy.

My thoughts are with you

Rosy x 

User
Posted 15 Jul 2016 at 10:31
Marje

I am so sorry that things are moving so fast and in the wrong direction. The coming months will be difficult but there can be good times in amongst it all. The blood transfusions really boosted Mick for at least a week and then he would slip backwards until the next one. He had them regularly in the last 6 months and we made sure that we did as much as we could when he felt well enough to.

The hospice care team should give you both a great deal of support and reassurance and provide you with everything from pain management to items at home that will make Tony more comfortable. I could not praise our local hospice enough they were such a comfort, their staff knew just what to say, what needed to be done and how to go about it.

It is also really a good idea to get to know them and what they can offer you both. When the time comes (and that could be sometime away yet) Lots now do hospice at home care which is terrific as it gives you all the benefits but in your own home.

I hope you and Tony can talk openly with each other about anything and everything the transition from palliative care to end of life care can happen slowly and measurably or it can happen without too much warning. Make the most out of every good day.

It may be all about Tony and what he wants now, however you still have to think about yourself and anything that you need to help you to be there for and with Tony through the rest of his battle.

If you ever need someone just to chat with please message me, I don't have many answers but I can listen and I most certainly can empathise. I offer you any support I can give.

my very best wishes and a big virtual hug for you both

xxx

Mo

User
Posted 15 Jul 2016 at 12:09
Hi marg

I am at a loss for words, I am so sorry to read of yours and tony's struggles. My heart reaches out to you at this time. I hope you manage to enjoy some quality leisure time in the summer months. Sending a big hugg.

Take care

Lesley xx

User
Posted 15 Jul 2016 at 17:22
Hugs all the way from me too Marje,

People often say on my post that they don't know what to say my reply is always just to know you are there is enough.

Thinking of you and Tony .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Jul 2016 at 21:57

Thank you all so much! I can't tell you how much it means to get supportive messages from women who have been, or are still, in a similar position.

The blood transfusion seems to have gone OK. Tony looks pinker already. Do you know what he said on the way home yesterday? "If this blood transfusion gives me a bit more energy, I think I'll ....... pressure-wash the patio!" I hooted with laughter and said, "So that's top of your bucket list? " It was like a line from a script by Victoria Wood or Alan Bennett. ("I may be not long for this world, Mavis, but I'll leave a clean patio when I go!")

Anyway, the chemo is fixed for a week today. In the meantime, Tony intends to eat a large chunk of Blue Stilton ("Sod the dairy-free diet, I'll eat what I like now!") as blue cheese is banned during chemo. I couldn't care less about the weeds on the patio, which is precisely why he wants to tackle them while he can, but hopefully we will soon have some pleasant outings and good times with friends as well.

We have some serious stuff to talk about too, and I'm sure that will follow, but it needs to be at a time when we both feel strong enough.

Thanks again, all of you. I'll keep in touch.
Marje

User
Posted 15 Jul 2016 at 22:28

Your post made me laugh out loud - twice!!!

Now you have mentioned the subject of difficult conversations, it may also be time (if you haven't done so already) to apply for the benefits Tony may now be entitled to. The hospice will probably have someone that can advise and help you get all the paperwork sorted.

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

User
Posted 16 Jul 2016 at 07:56
P

Sorry to hear you things are not going as you would hope and just to let you know we are thinking of you both.

Thanks Chris

User
Posted 16 Jul 2016 at 09:28

Hi Marje just catching up on your latest news. Despite the efforts of the hospital you are both facing the difficult period where treatment ends and palliative care takes over. Others have said how much you can get from good hospice care and getting medication for pain relief is vital. Hope you can find plenty of times in the coming months to have some good times together, eat cheese and sod the patio. Thinking of you both.

User
Posted 16 Jul 2016 at 22:07
Hi Marje

Just popped in and saw your update and my heart sank into my boots too. There really isn't anything anyone can say to console you both but I just wanted to say that I am thinking of you and hoping that you will both get to enjoy a little fun this summer, you honestly deserve it.

With much love

Devonmaid xxxx

User
Posted 18 Jul 2016 at 17:07

Hi, really sorry to read your update. My OH has just started Cabazataxel so he's half-way through first cycle and I think it's going to be a rough ride. I totally empathise with everything you are going through and send big hugs.

 

Glen

x

User
Posted 18 Jul 2016 at 23:23

I was wondering how you and Phil were getting on, Glen. Tony didn't find the first infusion of Cabazitaxel too bad, no major side effects, but his second dose is due to be six weeks from the first, as his blood counts were too low to have it as scheduled. It is still a risky business, and the dose is going to be reduced this time, for safety's sake - he is much weaker than when he first had chemo 18 months ago. Hope you and Phil are still managing a decent quality of life. Big hugs all round!
Marje

User
Posted 19 Jul 2016 at 07:05
Hi Marje.

The main side effect Phil has was major constipation impacted and laxido is like wallpaper paste so I'm told! 2nd infusion due 29th. As he had 2 units prior to 1st chemo hope boosted blood count. Like your situation though he is a lot weaker this time and gets very tired and worn out and therefore very down. I'll update my thread after chemo 2!!

Take care

Glen

User
Posted 19 Jul 2016 at 11:00

Tony thinks Laxido tastes like gin and tonic! He denies that his sense of taste has been affected, but who knows? The codeine-based painkillers also add to the constipation,but he seems to manage to balance it with the Laxido (so far at least).

User
Posted 21 Jul 2016 at 18:40

Marje (piglet), Glen, Lesley (Harmony) and Max

I'm so sorry to hear your latest updates about Tony, Phil, Bob and Kev. I'm a little behind them but I'm on the same road as your OHs. I hope for them what I hope for myself, that is that there will be good days to counter balance the bad ones before the end comes.

David

User
Posted 21 Jul 2016 at 18:51

I know David and thanks for your kind thoughts. The thing with this disease is that you can never tell how u are going to feel from one day to the next. On the good days you have to take advantage of it to do the things you want to do. As they say "don't put off until tomorrow the things you can do today". Definitely very appropriate where pca is concerned!

Max

"You can only play the hand you're dealt"

User
Posted 21 Jul 2016 at 18:53

Good to hear from you, David, and good that you are dragging your heels a bit in this race to the finish - the race that no one wants to win! Sharing our experiences and good wishes here won't change the outcome, but it can be a great comfort. Your avatar suggests that you're still managing to enjoy the good things of life while you can, and we're still doing the same as far as possible.
Best wishes,
Marje

User
Posted 26 Jul 2016 at 22:30

We saw the oncologist today. I shall start a new thread, as this header no longer applies.
Marje

 
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