Chemo or Enzalutimide

User

Posted 02 Mar 2015 at 22:44

Hi everyone

Just to update, before Christmas John was told he would be facing chemo or Abiraterone as his PSA has been steadily rising. Then we were pleasantly shocked to find that the PSA dropped and the decision was put off. Over Christmas and the New Year, John had significant pain in his illiac bone (back of the hip) and had 20 Grays of RT over 5 sessions at Oxford for palliative pain relief.

Today we found that the PSA has risen again (still only 7.2) but that at our next consult it would be likely that we would have to change treatment. One of the surprising things was that the oncologist mentioned that he could have enzalutimide as it's preferred to Abiraterone (less side effects). We had been set on the chemo route but have now begun to wonder as we have been told not to worry about the issue of having further drugs post Enzo and chemo.

So, all good really, RT has helped the pain though it's not gone it is very much under control and 4.3 years in to this journey we are pretty happy about the way it's going, well not happy, but we do feel lucky given the Gleaosn 10 scare factor.

Cheers all

Allison

User

Posted 03 Mar 2015 at 20:13

Lesley

I know Allison will not mind me doing this on her thread, I am so pleased to see you post again you have been missed.

User

Posted 04 Mar 2015 at 23:40

Not at MOTS???? What is the world coming to when a wedding is more important than my sheep???

You are never far from my thoughts, my friend x

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

User

Posted 05 Mar 2015 at 20:52

Hi Alison, very sad to hear your feeling rather low at moment, hoping you feel better and more positve soon. I have read many of your posts and gained so much from all of them. Enjoy your girlie lunch. Xxx

Mo, thanks for your lovely post, very touched. I don't find it easy to post but realise that by sharing individual experiences can help many others on this site. My aim is to share more.

Sharing a big hug to you both.

Lesley xx

User

Posted 05 Mar 2015 at 22:26

Alison

We all get a bit low sometimes and I agree that the new format is counter intuitive. It certainly has put a brake on my posting and I now work for PCUK! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

As always, you can unwind on The Dark Side as well as here. We will always be there for you http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

http://pcasupportforum.proboards.com/

Nil desperandum

Allister

User

Posted 03 Mar 2015 at 02:34

Allison

I am so pleased that the RT has helped a little, I believe the effects can go on for some time to come too. Further options on drugs that may keep John's disease under reasonable control is also great news. I no longer try to keep up with the debates on enzalutamide vs Abiraterone vs chemo so I just hope that whatever decision you go for proves to be beneficial and John's amazing journey goes on and on.

He is quite remarkable and indeed you are very blessed given the circumstances. I know when we first met you would never have dreamt that things would work out as they have.

It has been a real joy to see how much happiness your first grand child has brought to you both as well.

I wish you all the very best and look forward to seeing you at MOTs if not in Swindon sometime before.

User

Posted 03 Mar 2015 at 17:40

Hi Alison, with similar history would like to share that bob has had 10 months on abireterone pre chemo. The advantages to us have been him being able to continue good quality of life continuing to work, enjoying holidays and having quality family time. Only side effect has been fatigue and weakness.

Our journey is however changing a little now as psa rising again.

My thoughts to you are to enjoy quality life as long as you can pre chemo and maybe there will be more options post chemo when at that point in the journey.

On the other hand we are all so different and what is good for one person is not for another. Good luck with your decisions of treatment.

Lesley x

User

Posted 04 Mar 2015 at 23:46

Allison, as long as you manage to keep us up-dated as to how John is doing then we can excuse you from MOS, there is always 2016!

And as Lyn says, you are never far from our thoughts, you too Lyn!

Chris. xx

User

Posted 05 Mar 2015 at 08:05

Allison my love I know just what you mean about everything. It is hard and when you have the rubbish at work that you have had to deal with it makes it so much harder.

I will be in Swindon next week so if you fancy a "Ladies Wot lunch" day It would be really lovely to see you. Especially now that I know you are not coming to MOTs.

I can tell you all about my DIY bungles my crazy days at the gym (where I am finding it very hard to concentrate some days on the job in hand when our local Rugby club use the same facilities) both of which should make you smile and laugh. I can also tell you about the role I have at the hospice and how much comfort and pleasure that brings me. Of course it also means you can tell me all about your gorgeous grandbaby and show me all her latest photos and rolling, sitting, bottle throwing manouevres.

You are a really strong and positive person with a lovely Husband and family so please do not let work issues bring you down. If it is all too much take retirement and do some freelance work then you can be with John and be there to help your Girls out as well,

Big Big HUGS

xxx

User

Posted 05 Mar 2015 at 19:13

Allison

yes that sounds wonderful I will be there Sat 14th to chat and set something up maybe for Sunday, Tuesday or Wednesday that week.

Could do with some hugs myself

xxx

User

Posted 06 Mar 2015 at 08:51

Allison,

You and John are often in my thoughts as are many other forum friends ! I too, don't often post and feel kind of redundant though determined to put my pennyworth in to support others where I can. Do have that lunch with Mo, sounds a great idea. Much of my current routine is lunching with kind friends, alas, not good for the waistline but blow that at the moment ! I'm about to fulfill one of the things that kept me going when Neil was so ill, that is, getting a new collie pup, the little horror arrives March 16th so back to sleepless nights !

If you pass through Bristol and ever want to call in we're not that far off the M5 ! You will be very welcome. Love and regards,

Fiona. x

User

Posted 05 Apr 2015 at 18:32

Hi Allison, sorry to hear John is unwell. I assume that when they gave you anti biotics for the suspected UTI they also sent if off for analysis. That way it can tell them which anit biotic would be effective. I know this from bitter experience as a UTI with me got entrenched because I was initially on the wrong regime. If you are on the right anti biotics then you should see improvements in the colour of the urine after a few days. Mine goes cloudy and at its worst reddy but clears quite clearly on anit biotics. The symptoms can last longer including discomfort on the penis and need to pee urgently. If it is a kidney infection they should have picked that up from the tests too. If they did not test your urine that will be a question to ask.

Isn't PSA confusing? I have never had PSA that low but have had no pain so far. I waited until PSA a was 42 before getting Casodex which appears to be working for me for now, I know Chemo drugs are next and my uro is recommending aberiterone. I am awaiting an appointment with an onco to check out their view.

Sorry you are is this uncertain position it must be very worrying. You know we are all here thinking of you, I do hope you get answers very soon,

User

Posted 05 Apr 2015 at 19:00

Hi Allison,

I'm sorry John is not feeling well. I can't really help with any useful advice but I just wanted to send you and John my best wishes and hope everything is sorted soon.

All the best from here in Reading to you in Swindon,

Steve

User

Posted 06 Apr 2015 at 08:41

I would be concerned about the kidneys too, Allison. Did they send off his urine sample for detailed analysis, as Paul mentioned? If not, perhaps you could ask for that to be done this week? Also, I might be wrong but think it is a while since his last scan so perhaps time to request one of those as well?

You have had such a busy time and the excitement of baby D coming into your lives - perhaps John is doing more moving around than he did before, without either of you really noticing. Bending, lifting, pushing will all be a strain on that hip but the movements are unconscious - if John were going to the gym and doing more exercise, you wouldn't be surprised at the fatigue, aches & pains but because it is princess related rather than gym related, it is imperceptible.

Stay brave and ask for more tests, lovely friend x

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

User

Posted 06 Apr 2015 at 22:01

Sorry hon, I think the opposite could be true. The low mood could be worry about the increasing pain and sadness at the prospect that one day he will have to leave his precious grand-daughter - you are such a close family but now he has a new and overwhelming need to stay around for as long as possible.

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

User

Posted 06 Apr 2015 at 23:35

Hi Allison,

They are such a worry these men of ours. I have everything crossed that it is a UTI and as Paul has said they can be hard to shift, sometimes a different type of Aunty Bs is needed and it can take longer to see results but I know your concerns any worries can and do enter in to realms of panic very quickly in our situation.

A UTI can make you feel very low, and give the back ache that John is describing I won't give any advice on who or where to go because you are a PRO at this , been there done this and got several T shirts.

So just to say much love winging it's way and Stay strong.

BFN

Julie X

Edited by member 06 Apr 2015 at 23:40 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Apr 2015 at 09:33

Hi Allison,

Any concerns I would go down the get it checked and get some answers from the medics. Nothing worse than being worried and not knowing. You are both in my thoughts, and fingers crossed it is a UTI .

Fiona xx

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User

Posted 03 Mar 2015 at 02:34

Allison

He is quite remarkable and indeed you are very blessed given the circumstances. I know when we first met you would never have dreamt that things would work out as they have.

It has been a real joy to see how much happiness your first grand child has brought to you both as well.

I wish you all the very best and look forward to seeing you at MOTs if not in Swindon sometime before.

User

Posted 03 Mar 2015 at 08:26

Hi agree with Mo...

Just want to wish you both well and glad to hear that options are on the table

Take care
Bri

User

Posted 03 Mar 2015 at 13:06

Hi,

It's interesting that what you describe is exactly the discussion I had with my last visit, putting in my case aberiterone before chemo and seeing them both as 'chemo' options. I am hoping Casodex is working and that this decision is delayed a little but John's journey is so like mine though his PSA has stayed much lower. My own perspective on this is that either enzo or Abby is a preferable next step to chemo. For me it allows me to continue work longer and gives a better quality of life. Which of them is 'better' is I guess still contested but both have their adherents and maybe by the time we have reached and been through one of them and chemo they may have found a way to give the one you didn't choose.

Hope you have a helpful consultation, I wish you every good luck and will be watching your results with a lot more than passing interest.

User

Posted 03 Mar 2015 at 17:40

Our journey is however changing a little now as psa rising again.

My thoughts to you are to enjoy quality life as long as you can pre chemo and maybe there will be more options post chemo when at that point in the journey.

On the other hand we are all so different and what is good for one person is not for another. Good luck with your decisions of treatment.

Lesley x

User

Posted 03 Mar 2015 at 20:13

Lesley

I know Allison will not mind me doing this on her thread, I am so pleased to see you post again you have been missed.

User

Posted 03 Mar 2015 at 23:09

Hi Alison,

Really interesting to hear that your Onco is advising Enza rather than Abbi because of reduced side affects, this is what I had read and researched but our Onco is advising Trevor to start Abbi (next visit in 4 weeks ) , it is such a mindfield . It seems we are both at a cross road, lets hope we both take the right turn in the rocky road.

Lots of love as always

BFN

JULIE X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Mar 2015 at 17:41

My consultant said Enzalutamide had fewer side effects than Aberatone. I started enzalutamide after chemo, my PSA initially dropped by 50% but then went back up to 80-100 range. I moved onto RA 223 which has dropped my Alkaline Phosphatase to 130 (within normal range), bone pain ok. I was taking enzalutamide as well as having RA 223 for 2 months, am now on break from enzalutamide till end of RA 223 but will probably restart. I had few side effects from enzalutamide, just fatigue really.

We are able to live pretty much normally, holiday abroad and come back for treatments. Although we were stopped at Eurotunnel coming back from France due to high levels of radiation in the car! We were let through when they established it was coming from me and cause was RA 223.

I decided to have chemo before enzalutamide because I thought it better to have chemo whilst I was "healthier". Although I tolerated chemo pretty well In retrospect I think i would have been better off delaying the chemo until it was the last resort. Mainly because it wasn't that effective for me and the side effects take a long time to disappear. However, that is the benefit of hindsight and with a better result I would probably be saying the opposite.

Everyone's "journey" is unique and chemo first may be the right decision for you. Sharing our experiences can only give others food for thought and hopefully help their own decision process.

Good luck to you all. The main thing is to be positive and live to the full for as long as you can.

Best wishes
Martin

User

Posted 04 Mar 2015 at 19:53

Hi Martin, my Oh followed a similar path to you and had 5 cycles of chemo before Enzalutamide. Had to finish after 5 due to peripheral nerve damage, been on Enza since beginning of July, fingers crossed it's doing its job!

Glen

User

Posted 04 Mar 2015 at 21:14

Thanks friends.

Mo, I am not sure why I have taken a step back from the forum, maybe it's because i have lost so many friends here and it gets a bit much or the change of the forum makes it somehow harder to post, I always have to log in now instead of my details being saved and that puts me off a bit too. I just find it a chore really compared to the good old days (I'm not a Luddite I genuinely find this place a bit more confusing than it used to be).

I often find I haven't anything to say of any use any more, I never wish to sounds trite and find it hard to find the right words. The trouble I've had at work (promised redundancy didn't materialise) has knocked me down. I'm trying to get back up but four years of bloody Cancer doesn't help either. I know how lucky we are too. So mustn't grumble and all that xxxx

PS I won't be at MOS this year, we have a family wedding on the day so will be wearing our titfers and posh frocks, suits instead of drinking buckets of vino with you lot, shame.

Lots of love

Allison

Edited by member 04 Mar 2015 at 21:16 | Reason: Not specified

User

Posted 04 Mar 2015 at 23:40

Not at MOTS???? What is the world coming to when a wedding is more important than my sheep???

You are never far from my thoughts, my friend x

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

User

Posted 04 Mar 2015 at 23:46

Allison, as long as you manage to keep us up-dated as to how John is doing then we can excuse you from MOS, there is always 2016!

And as Lyn says, you are never far from our thoughts, you too Lyn!

Chris. xx

User

Posted 05 Mar 2015 at 08:05

Allison my love I know just what you mean about everything. It is hard and when you have the rubbish at work that you have had to deal with it makes it so much harder.

I will be in Swindon next week so if you fancy a "Ladies Wot lunch" day It would be really lovely to see you. Especially now that I know you are not coming to MOTs.

Big Big HUGS

xxx

User

Posted 05 Mar 2015 at 09:09

That sounds like a plan, fancy going somewhere for a proper lunch? I know a few nice places and would be happy to drive. I could do with a chat, feel pretty low a lot of the time. I know I'll come out of it but it takes time to right the boat doesn't it?

I'll give you a ring to discuss

Lots of love

Allison xxx

User

Posted 05 Mar 2015 at 09:33

Allison

I hope you feel a bit better soon. I can say that without appearing to be patronising as I have seen what brave fighters

you and your husband are.

However, I agree wholeheartedly with you about this new website. In addition to the problems you are having I have

nightmares with the links , the first one or two are OK then it freezes. I know it is not my computer as any other site I access

is totally problem free. I have complained about this to the technical people and they suggested

it was my computer. I know it isn't and I told them so, since then they haven't even bothered to reply.

What they fall to realise is that apart from coping with such things as you are right now, this

site is very important to any of us looking for support or a virtual arm round our shoulders and

making it less user friendly puts some of us off using it.

User

Posted 05 Mar 2015 at 19:13

Allison

yes that sounds wonderful I will be there Sat 14th to chat and set something up maybe for Sunday, Tuesday or Wednesday that week.

Could do with some hugs myself

xxx

User

Posted 05 Mar 2015 at 20:52

Mo, thanks for your lovely post, very touched. I don't find it easy to post but realise that by sharing individual experiences can help many others on this site. My aim is to share more.

Sharing a big hug to you both.

Lesley xx

User

Posted 05 Mar 2015 at 22:26

Alison

As always, you can unwind on The Dark Side as well as here. We will always be there for you http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

http://pcasupportforum.proboards.com/

Nil desperandum

Allister

User

Posted 06 Mar 2015 at 08:51

Allison,

If you pass through Bristol and ever want to call in we're not that far off the M5 ! You will be very welcome. Love and regards,

Fiona. x

User

Posted 05 Apr 2015 at 18:07

Happy Easter to all my forum friends

I have held back from posting about the latest on our journey because I sometimes just don't feel able to articulate what I want to say properly, but here goes. John hasn't been well since Christmas really, he had RT for a nasty pain in his hip, which seems to have worked but not stopped the rise of PSA, so there was I idly wondering where it was coming from. He has had an increasing pain in his left side round the back for a while and I eventually persuaded him to see the nurse and he has protein and blood in his urine, not much but a UTI is suspected and antibiotics were given just in case. After four days there is no change, no specific urinery symptoms, other than the usual hesitancy and occasional urgency so I'm wondering if this is a UTI at all. I know this is a common occurrence amongst our men. I suspect kidney issues rather than a urine infection. He doesn't have a fever but he does feel ill. I'm not sure what to do next really, wondering whether to speak to the specialist nurse after the easter holiday. I know most infections (if it is one) would be a little improved after a few days on antibiotics, but does that apply to a UTI?

It's frustrating to have to wait till Tuesday as it's not an emergency, but I feel a little concerned, given the PSA rise (nothing major just 2 points in 6 weeks, it's still low at 7.9). Would you suggest another PSA test, last one was about 5 weeks ago? I'd be grateful for your sage advice forum friends.

Worried of Swindon.......xxxx

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