I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

"The road ahead"!

Email this conversation Print this conversation

User

Posted 24 Jan 2019 at 09:34

Devonmaid

Thanks for that. Much better today so unless it returns I ll check it out with my onco when I see her on 11th Feb. Again just for info. Temperature And BP well within normal range.

Keep the Faith

User

Posted 07 Feb 2019 at 15:46

A you know I had my 6th and last Radium 223 treatment on the 27th Dec. Just had blood results prior to meeting with my oncologist on the 11th and my PSA is up 587 points to 945. Whilst my ALP which has been my main marker whilst on Radium 223 is up 37 points to 114?? Again other than general aches and pains I feel ok. So I wonder what Monday will bring? I ll update you all accordingly.

Keep the Faith

User

Posted 07 Feb 2019 at 17:49

Good luck on Monday. This awful illness does its utmost to beat us, but your OK feelings hopefully give you optimism to kick it into touch as well.

User

Posted 12 Feb 2019 at 19:07

Well had my meeting with my oncologist yesterday, but had to get my head around a few things so I haven’t updated till today.

First of all it seems the cause of my current pain issues is down to my bone marrow being under stress (from previous treatment regimes). Therefore whilst my blood levels are ok at the moment if ithe problem continues I may have to have a blood transfusion sometime in the future.

Also I was started a course of Enzalutamide yesterday, and whilst I’m “sure it must be in my head”, the bone pain I’ve been having for the past 3 weeks has reduced considerably?? Anyway I’m now on enzo for at least the next month, or if it works maybe for much longer?

The next step after that will be to re-challenge the PCa with Docetaxel to try to knock it back and bring my PSA down Possibly followed by some trials or even some private treatment.

So once again a mixed bag of results but “onwards and upwards” and let’s see what the next few months bring.

Keep the Faith

User

Posted 12 Feb 2019 at 20:15

Hi,

No, I do not think you are imagining significant pain reduction with Enzalutimide. I had a lot of hip pain wihich disappeared almost immediately after starting this drug. Also initially, it reduced my PSA down to single figures (happy days!). Although it was about 8 months before the treatment was stopped after becoming ineffective, some people on here have had many years on it.

Here's hoping you can be another one!

Best regards

User

Posted 12 Feb 2019 at 21:13

Hi Orm123

Thanks for that info and if it works anything like that for me I ll be over the moon!😂

User

Posted 20 Feb 2019 at 11:08

Quick update. Day 10 on Enzo and severe aches and pains gone. Played golf yesterday (1st time in over 3 weeks and all ok). Also now that the pain has gone I’m much much better in myself and looking forward to walking the dog later.

C T scan on 4th March, followed by Oncologist review of same and decision on wether to stay on Enzo on the 11th. Full bone scan on 14th to review how well/not Radium 223 has worked. God bless the NHS.

I ll update accordingly after receipt of scan results.

Keep the Faith

User

Posted 20 Feb 2019 at 16:02

promising news, I must admit that Enzo seems to have had an impact on John's hip pain too though he remains on patches as we dare not try without. So far so good!

Love Devonmaid

Edited by moderator 20 Feb 2019 at 18:18 | Reason: Fix spacing issue

User

Posted 20 Feb 2019 at 17:31

Devonmaid, what's with the acres of carriage returns in your posts? Unintended, I'm sure, but I suggest you find out why it is happening!

User

Posted 20 Feb 2019 at 17:34

£5 says it was posted on an iPad or iPhone 😂

User

Posted 20 Feb 2019 at 18:20

Great to hear you have lost severe aches and can golf etc.

Ido4

User

Posted 20 Feb 2019 at 18:34

Great news although the appeal of golf passes me by, I'm afraid

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

User

Posted 20 Feb 2019 at 22:43

Sorry carriage returns due to m eusing m ylaptop (using my laptop) due to the nonsense on the ipad as seen here a no tbe ing (not being) able to see the post now button. No idea why. i rarely post now due to these technical issues, they drive me nuts.

User

Posted 11 Mar 2019 at 19:16

Just seen the Onco and all good. Enzo has reduced my PSA by 36% to 600 in 3 weeks and whilst my ALP has increased this is a known (bounce) factor often seen during early treatment.

Just collected my 2nd months supply of Enzo with my next Onco appointment booked for the 8th April. And if my PSA is still reducing at that time, then this will be the way ahead for the foreseeable future.

Last weeks CT scan has shown that the nodules on my lungs ( which have been there since my 1st scan in Feb/17), are still an area of concern, but as of now no other treatment required.

Also bone scan planned for later this week now postponed till later in the year just to give Enzo it’s head.

Overall the difference in my well being over the past month is remarkable. In that I haven’t had to use any pain killers, whilst I was living on them for the previous 3 weeks, and whilst I’m still a bit stiff after playing golf, I put some of this down to arthritis which is clearly visible in my hands, so must be present elsewhere too.

Anyway let’s hope Enzo continues to do its work, thus delaying any further chemo and/or trials for a later date.

Keep the Faith

User

Posted 11 Mar 2019 at 23:21

Really good news about the PSA reduction and the improvement in your general health, John has felt much better on Enza too, not enough to get out and about much and no idea about PSA yet as we havent see blood results due to late bloods last time and onco cancellation this time. Should know next week, but clearly things have got better so expecting things to have improved. We have noticed that John is suffering from oedema again (abdominal lymph nodes to blame) and he is on fentanyl patches 25mls, so pain is mostly ok. Fingers crossed.

Lots of love

Devonmaid xxx

User

Posted 12 Mar 2019 at 08:08

Devonmaid

Thanks for the comments hope John feels a bit better soon. Not sure if it’s the same with your health authority but I usually have my bloods taken on a Thursday before my Onco appointment on the Monday, and they are always printed out for me ( by one of the oncology nurses) prior to our meeting. Haven’t had a cancellation in over two years but if I do I ll still know my blood results and what to expect.

Also on one occasion she wanted something else checked so wrote “urgent PCa request” on the form, I took over to the bloods Dept. Went for a coffee and within an hour the extra results were back in her office! So it can be done. God bless the NHS!😂

Take care

Keep the Faith

User

Posted 08 Apr 2019 at 17:44

Just back from meeting with Onco with another mixed bag of results. PSA back up to 835 with ALP up to 272 therefore even taking into account any “bounce” Enzalutamide is failing so prescription stopped after 2 months!!

Now trying Aberaterone plus steroids for a month to see if that’s any better. If not possibly re-challenge with chemo in May to try to knock it back a bit.

In the mean time I’ve become anemic so it’s a blood transfusion for me on weds 10/4/19, and I’ve told them I want the blood of a 21 year old athlete/football player!!😂

In the mean time she’s looking for suitable trials which will if applicable/needed start in July/August time so that’s the summer sorted then!?

Anyway looking forward to getting back on the steroids as they were great for my lower back pain when I was on them previously.

Still managing to walk the dog and limited DIY. Also buggies back “on” next week so maybe try a few holes of golf too as I haven’t played now for 3 weeks?🏌️

I ll update as appropriate

Keep the Faith

User

Posted 08 Apr 2019 at 18:34

As you say, a real mixed bag. What does come through very strongly from your well-chosen words though is your wonderful strength of character. Long may it continue ...

User

Posted 08 Apr 2019 at 20:58

Your some cookie valley boy what spirit I’ve been on abirateron for 4 months with steroid initial PSA was 11.8 then after prostrap went down to 3.2 after one month on abiraterone PSA went down to 0.6 prostrap injection changed to the 12 week jab after a further 2 months PSA risen to 5.2 one month later risen to 8.2 next prostrap injection tomorrow best get that double checked oh well onward and upward R

User

Posted 08 Apr 2019 at 21:59

A very mixed bag Valleyboy. Hope blood transfusion gives you a boost.

Ian

Ido4

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.