Where now?

User

Posted 22 Jan 2019 at 19:36

Time for my own thread I think...

There's a timeline in my bio, but here's a quick precis: Initial GP visit 30 Dec 2014 aged 56 with sudden severe pain in groin and lower back, PSA was 41.8. Diagnosed Feb 2015 with Advanced PCa Gleason 4+3, T4 N0 M1, mets in lower lumbar L2. Started Triptorelin/Decapeptyl HT followed by Docetaxel 'early' chemo. PSA dropped and remained stable <1 through to end of 2016 then rose steadily in 2017. Had RT to L2 to reduce spine met Feb 2018. Started on Abiraterone with the IPATential150 trial in April 2018, and PSA dropped to 0.44. Sadly it started rising again in September reaching 2.6 beginning of January this year and was signed off the trial due to disease progression and swelling at L2. Good news is that organs and lymph are all clear.

So where now?

Currently I'm waiting for the referral back to my local hospital for more RT to L2 to knock that back again. I'm also going to get more chemo, Cabazitaxel/Jevtana there at some point. Anyone had that? How does it compare to Docetaxel?

Another possibility is continuation of Abiraterone or maybe try Enzalutamide. I can have either as my previous Abiraterone was funded by the trial, not the NHS. Thing is, what to choose? - Is the PSA rise due to the Abi failing or just general progression - Would Enzo work if Abi is failing?

Thoughts?

User

Posted 22 Jan 2019 at 23:24

Has your primary tumour been irradiated?? There is evidence that treating the mother ship in advanced cases is beneficial if there are limited Mets..

User

Posted 23 Jan 2019 at 00:15

If the disease has progressed then I think they will tell you that abi has failed. All the trial data showed that once abi fails, enza will also fail. However, they do work in different ways so if you can get enza, it must be worth a shot?

We have a few men that have had cabz with some success - it usually seems to be tolerated quite well. What about a good old fashioned oestrogen like Stilboestrol?

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

User

Posted 23 Jan 2019 at 11:01

Originally Posted by: Online Community Member

Has your primary tumour been irradiated?? There is evidence that treating the mother ship in advanced cases is beneficial if there are limited Mets..

No, told at the outset it wasn't being offered. I've only had RT to the spine for pain relief.

Thanks Lyn, another question to ask when I get to see them

Edited by member 23 Jan 2019 at 11:03 | Reason: Not specified

User

Posted 31 Jan 2019 at 10:27

Well I'm still waiting to hear from my local hospital about my 'urgent' RT and continuation of systemic treatment. It's now 4 weeks since I came off the trial, 4 weeks without any treatment... I've called them and there's nothing, feeling pretty abandoned tbh. Trying to be positive, Is a month much in the grand scheme of things?

User

Posted 31 Jan 2019 at 11:03

Sorry to hear that. Have you checked with the trials people that they have sent a referral? Did you have a named nurse at your local hospital that you could contact to find out what is going on or otherwise your GP. Your GP should have been sent a letter so say what is going on which you also should be copied into. For my husband the trials team had to continue blood tests until they had done the referral as it was liver toxicity from a drug taken under them so we only had about a month without seeing anybody but in our case it was the same hospital, Do hope you hear soon.

User

Posted 31 Jan 2019 at 11:21

Yes, I have a copy of the referral letter and the one to my GP. I have called my previous specialist nurse contact but there was nothing showing.

User

Posted 31 Jan 2019 at 18:44

Hi Nevyn

I had a horrible experience trying to get the attention of the specialist team over xmas. i do have Hospice support and that helps. Are you in contact with your local hospice, they are brilliant at getting things moving as they know all the people and can often help.

good luck

Devonmaid

User

Posted 01 Mar 2019 at 19:08

Hi Nevyn

Have you heard anything?

Just concerned.

User

Posted 01 Mar 2019 at 22:00

Hi, yes, just last week. I forced their hand somewhat, got myself admitted again for 2 nights with a suspected spinal cord compression which put me back on the radar...

I had severe pain in the right hip and all down the leg, together with a numb thigh and pins and needles. I'd had similar a year ago, but this time it was much worse. Called the specialist nurses and had a reply this time, was told to come in to the emergency assessment unit. MRI showed soft tissue swelling at L2 but thankfully not much pressure on the cord.

Have now seen a radiologist who's going to zap my back again, 20 grays this time in 5 fractions, the planning CT scan is next week.

Still not seen an oncologist. Still not had any meds since beginning of January... PSA is over 6 now, but I was fearing worse.

User

Posted 02 Mar 2019 at 10:13

What a nightmare having to wait so long, I assume you don't have a palliative care or hospice nurse who can intervene on your behalf? They are not just for end of life, they help people live with diseases like cancer too. Ours has been a great support. John’s PSA went to 99 before we got Enza after Chemo, his PSA was rising from the fifth chemo onwards anyway. He did really well on Stillbestrill, he had three years of stable disease, defintely worth asking about.

You really need an oncology appointment, I hope your specialist nurse sorts that out asap.

good luck

Devonmaid

User

Posted 02 Mar 2019 at 19:01

Hi Nevyn

Sorry to hear about the pain but at least now something is being done and I hope the RT helps with the pain. I feel you need to keep pushing for an Onco appointment though I'm not sure what they will suggest. Something hopefully. My husband's PSA has stabilised their way of saying a small increase but at least he is still on Enzo. His last letter said he is to have 3 monthly CT scans for the trial people so feel that is good.

Best wishes.

User

Posted 20 Mar 2019 at 20:08

Well I've had the RT, last session was a week ago today. Pain is reducing somewhat but I'm still quite sore and still have the pins and needles. What I'm really struggling with is fatigue and sickness...

It started maybe 6 weeks ago, i.e. LONG before the RT. I noticed I was getting tired quicker and had a severe lack of energy and strength. I also noticed a large reduction in muscle mass in quite a short time. I had a couple of funny turns which started with me yawning my head off, followed by an extreme hot flush with profuse sweating which turned into an all over quesy feeling, but without actually being sick, which was quite debilitating. The second one was more severe and happened whilst I was out to lunch with friends and I ended up sitting in the car for more than an hour before I felt fit enough to drive home...

Since then I've felt increasingly tired, queasy and frequently head off for an afternoon nap. My biggest worry however is the decline in strength, I can't do many of the things I used to take for granted. Even climbing the stairs at home is hard work and if I have to carry something, even something innocuous as a laptop I really struggle. It's the speed at which this has happened which is most worrying...

Has anyone experienced anything similar? I know RT can cause fatigue and mine has certainly made it worse.

Does anyone have any thoughts on stopping Abiraterone suddenly as I have done? Can this cause problems?

p.s. I'm still waiting to see an oncologist, that's 11 weeks since coming of the trial and 11 weeks since I had any systemic cancer treatment..

p.p.s. I have a CT scan on Friday and a follow up with the radiologist on Monday. I'm hoping the CT is in preparation for an appointment with an Onco in the not too distant....

User

Posted 20 Mar 2019 at 21:39

Hi Nevyn

Can't help with the RT as my husband hasn't had that. He had a CT scan in February which was asked for by the trials team and understand that this is likely to continue every 3 months. Our Onco today seemed very pleased with that as she doesn't need to order scans. Don't know today's PSA but last 2 were 2.5 and 2.6 which they count as stable, all other bloods were fine. We will be phoned if they are concerned with PSA (probably my husband will ring anyway) and we now have 2 months Enzo and no more appointments for 2 months.My husband is feeling really well and good energy levels walking 4 or 5 miles most days and sometimes a lot more. Hopefully we will be able to plan a holiday in this time.

I do feel you need an Onco appointment urgently to discuss next treatment. We were warned today that Enzo wouldn't work forever but hopefully there would be other treatments.

Do hope you get an Onco appointment soon.

Best wishes.

User

Posted 10 Sep 2019 at 07:24

Hi Nevyn

Was there any progress after your last Onco appointment?

Hope things are okay.

John

User

Posted 10 Sep 2019 at 11:35

My oh did have fatigue after rt. Also if you have stopped arberatitone and steroid you might notice changes. The arberatitone seems to have fatigue as a side effect as well as other things. Take things gently and rest when you have to. Not being able to do as much as you used to do takes a bit of time to accept. Life changes all the time but rest is important as well as doing what you can when your energy levels are good.

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