Chemo or Enzalutimide

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.

Hi

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

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

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

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

Hi Allison I am sorry you are going through such a tough time. Other replies have a given good sound advice. I can't answer regarding uti as we luckily haven't had that one. I know people cope differently on treatments but my oh has responded well to docetaxel enzalutamide and now cabazataxel. They have all helped with pain and reduced the psa for a reasonable amount of time. You have always replied to my post so positively so please take heart and hopefully whichever treatment is next will give good positive results. Xxx

The sample was sent off on Wednesday for testing but for what exactly I don't know, assume the type of infection rather than anything else. He's still the same today, pain is still in side and pain higher up in the back too. It could be the fact that he is picking up the baby and having lots of cuddles, but that wouldn't account for him feeling physically so low, in fact the opposite really.

As the holidays will be over tomorrow we will do something about it, I'm thinking phone the nurse at the GP in case the results are back (doubtful given the holidays) and try to speak to the specialist nurse at the hospital for more advice.. Of course, it could just be muscular, but and its a big but for me, John never complains - I didn't know that his Gall bladder and bile duct infection gave rise to pain at level 10 nor the Xmas and New Year pain, again a 10, until he had had that for some days. He simply doesn't mention it, so the fact that he is telling me every day that his back hurts as does his side, makes me worry.

We have had the family round today and had a lovely day, so that's a good thing.

Let's see what tomorrow brings. I don't expect any urgent action, even with severe pain at the New Yer we had to wait 19 days to see the oncology team.

Love Allison xxx