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"The road ahead"!

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

J.

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

J.

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

J.

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

J.

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!

AC

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

J.

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

J.

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

J.

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

User
Posted 08 Apr 2019 at 22:22
Keep the faith Valleyboy.

It is always good to see your positivity shining through

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 30 May 2019 at 20:05
Well just had my blood results in time for my meeting with my oncologist on Monday, and whilst I’m feeling fine in myself and still going about my daily bits and bobs. my PSA has gone up to 1668, which is the highest it’s ever been. And my ALP has gone up to 569, again another new record. Still on month 2 of Abiraterone but no doubt I ll come off that on Monday as during my last consultation in early May she suggested that if my PSA continued to rise then I could well be back on the chemo(doxetaxel) wagon from the 10th.

Also Been finding it a bit uncomfortable to walk long distances now, so I’ve hired a mobility scooter for a week, (try before you buy). And the dog loves it as I’m now able to take him out on his 3 mile daily walk, whilst I sit down and drive alongside him. It’s even got a cup holder!! Which I stick in a mini-flask so it’s hot coffee in my half way round pit stop!!😂

Anyway I ll keep you all informed about what happens on Monday so until then.....

Keep the Faith.

J.

User
Posted 30 May 2019 at 20:50

Hi Valley boy. 

Been a wee while since i replied to you.

I too have my blood results back prior to oncologist meeting tomorrow and unfortunately my psa has started to rise. Nowhere near yours but I'm totally devastated. 

Keep fighting mate. 

Sandy

 

User
Posted 31 May 2019 at 23:49

Hi Valley Boy

you’ve not had much luck lately hope things improve for you soon my PSA is slowly rising still on abi hope it’s going down after bloods next week feel fine at the moment.

Keep on plugging away J it’s the only way.

Best Wishes

R

User
Posted 03 Jun 2019 at 21:38
Ok. Had scheduled Meeting with Onco today and as expected 2 months on Abi has failed to make an impression on my PSA so it s back on Chemo(doxetaxel) from next Monday.

During these infusions I ll also be getting a biosophanate infusion to strengthen my bones.

Not sure how many infusions I ll get in this treatment cycle as it all depends on how well I tolerate the chemo this time round. As although I sailed through my previous 13 chemo infusions as I’m now rechallenging “it” after quite a break, we ll just have to see how it goes.

As usual I ll keep you all updated as appropriate.

Keep the Faith.

J.

User
Posted 03 Jun 2019 at 22:16
Best of luck, Valleyboy
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Jun 2019 at 08:05

My very best wishes Valleyboy.

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 Jun 2019 at 09:59

Best wishes Valleyboy.

Ido4

User
Posted 01 Jul 2019 at 17:37
Ok. Just had infusion no 15 of Docetaxel. All ok. Bone marrow still struggling so I didn’t get the bone hardener infusion this time, (had it with No 14). As they want to get all my bloods back on track 1st. Also been given 2 x calcium tablets per day and a tube of soluable phosphate tablets to add to my ever growing medicine list, and all of this will again be reviewed prior to my next infusion on the 22nd.

3rd blood transfusion also booked for this weds. As Even tho my bloods are moving in the right direct they are still well below”normal”. So I’m getting another couple of bags on weds.

Just for info PSA still on the rise, but Onco is not too concerned with this as I’m still feeling ok in myself. ALP down over 100 so hopefully that’s a good sign too.

Going up Pen Y Fan which is the highest mountain in South Wales at the end of July. On a mobility scooter!! With about 30 helpers to carry it over the drainage ditches etc. And as I’ve already done two charity events for PCa I’m doing this one for the Chemotherapy unit at Glangwili hospital Carmarthen. Looking to raise at least £1000 with over £400 pledged already. So if you fancy making a small donation (only folding money accepted)!, please send me a private message and I ll give you the details of my “just giving” page on FB. As I don’t want to give out those details on this general message board.

All the best

Keep the Faith

J.

User
Posted 21 Jul 2019 at 12:00

Ok. Pen y Fan mountain walk/ride completed yesterday. With the 886 metres taking 4 hours up and down. Over £2500 raised to date with the “Just Giving” page open till end of July. Couldn’t have done it without an amazing team of helpers as by the finish not only had we negotiated the mountain but 216 ditches too!

On the medical front had my bloods done on Thursday, with Chemo No 16 planned for Monday, and they indicate that my PSA is down 300. 😜 With my ALP levelling off too. Other bloods eg. Red and white cell counts also moving slowly but in the right direction. So hopefully once more Chemo is doing its job for me?

Anyway putting my feet up for the rest of the day, oh look there’s golf on the TV all day too!!😂

All the best

Keep the Faith

J.  

 

User
Posted 21 Jul 2019 at 13:34
What a fantastic achievement- well done!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2019 at 17:46

Brilliant on both counts. Hope you feel on top of the world. Nothing like a mountain walk to make you feel great afterwards.

 

Best Wishes

Ann

User
Posted 21 Jul 2019 at 18:01

Well done hope you had a good view from the top 

R

User
Posted 22 Jul 2019 at 22:42

Great achievement ValleyBoy.

Ido4

User
Posted 08 Aug 2019 at 12:47
Met with Onco this morning and although my Hb Readings are down its still ok for chemo No 17 on Monday. Also a decision will be made then as to wether i need another blood transfusion on Wednesday. We also discussed the way ahead, and whilst I’m still booked in for at least 2 more Docetaxel infusions. I may then be going onto the Lutetium 177 trial in Bristol. If accepted I ll get a Full Pet/Ct scan prior to any treatment to see if I’ve got the right receptors for treatment. On the down side my Onco who has treated me since day 1 has informed me that’s shes leaving the hospital in September for pastures new. So let’s just hope her successor is just as good?

Anyway that’s all for now I ll update as/when applicable.

Ps

Re my Pen Y Fan Charity ride/climb. over £3500 raised so far, (for the chemo unit in my local hospital).

Keep the Faith

J.

User
Posted 08 Aug 2019 at 13:11

Hope all goes well. Brilliant amount raised, well done on that.

Ido4

User
Posted 09 Aug 2019 at 16:59

Good result with the Pen y Fan climb well done. Keep the faith with the treatment sorry to hear about the Onco best to have some continuity if possible as you say hope the replacement is good.

R

User
Posted 10 Aug 2019 at 00:39

I hope you get on the trial Valleyboy, no one deserves that chance more. You a a real role model

 

Lots of love

Devonmaid

User
Posted 10 Aug 2019 at 07:58
Thanks Devonmaid.

Can’t believe with all your issues you’ve still got time to wish me well. Try to stay strong for the family.

Keep the Faith ( Northern Soul Style).

Love

J.

User
Posted 12 Aug 2019 at 16:05
Ok..just had chemo No17. With Zolendronic acid No 3. All ok at mo. Plus Hb back up to 86 so no blood transfusion needed Wednesday. But keep an eye on it till next chemo on 2/2/19.

Also during the infusion I read an article by Dr Michael Mosley (TVDoctor). Stating that told build up calcium levels and red blood cell count. Consider drinking full fat milk, (at the moment I’m on either skimmed milk or soya milk). Eat only mature cheese but not soft cheese.

Plus eat good quality lean red meat instead of bacon, sausages and ham, which I eat very little of anyway. -obviously all the above in moderation?

So as I’m up for anything I ll try it and see how my bloods look next time?

Keep the Faith

J.

User
Posted 12 Aug 2019 at 17:25

Traditional quality British sausages are classed as lean meat rather than the processed continental and American kinds - check the ingredients if in doubt

Edited by member 12 Aug 2019 at 17:26  | Reason: Not specified

User
Posted 13 Aug 2019 at 09:31

Hope the treatment goes well and you stay well it was interesting to read the info about the nutrition it may well come in useful. After meeting with the Onco yesterday I’m staying on the Abiraterone for now and a CT scan is planned on the result of that will decide the way forward.

keep the faith

R

 

 

User
Posted 29 Aug 2019 at 20:30
Had bloods today for chemo on Monday, but as my Hb was down to 68 and I’m pretty breathless if I exert myself, then I’m having a transfusion tomorrow with further chemo postponed until my bloods get back to near normal. PSA up 300 to 1807. Whilst my ALP, which is a better marker for my bone related issues, is down another 102 to 242, so something is going in the right direction.

However, it never rains but pours in that for about a week I’ve had blurred vision in my left eye. So I went to the opticians on Tuesday, they did a comprehensive eye health check which indicated 4 areas of blood build up in the back of my left eye, including one in the centre which is the one that, when I look at someone’s face I see it through a red mist? There was also 1 area of concern on the edge of my right eye. They immediately referred me to the ophthalmic Dept. At my local hospital and at 4-30 on Tuesday I had a phone call asking me to attend at the hospital midday on weds. Yet again fantastic service from the NHS!!

Anyway I duly attended and was subject to another barrage of eye tests, which confirmed the opticians findings, however they did add that the cause of the problem could well be my chemo and tablet regime? So they’ve put me on eye drops twice a day till the 18/09, when everything will be reviewed again.

I mentioned this to my oncologist today who agreed that it could well be down to the chemo, (17 infusions so far), So she has postponed my next infusion due on Monday until after the 18th. Sept.

Anyway as usual I ll keep you updated as/when applicable.

Keep the Faith

J.

User
Posted 29 Aug 2019 at 20:53
Hi Valley Boy

As you say fantastic service from the NHS they do pull out all the stops when needed the eye problem is a bloody nuisance I hope they can sort that for you.

Keep the Faith

R

User
Posted 29 Aug 2019 at 21:01

Great to see your positivity shining through Valleyboy.

Keep going

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 31 Aug 2019 at 23:16

Sorry to hear this Valley Boy, I didn’t know this could happen and am glad that the NHS is doing the right things. Fingers crossed.

lobe Devonmaid xxx

User
Posted 12 Sep 2019 at 11:53
Ok. As mentioned previously, due to one thing or another my chemo infusions have been put on hold at the moment. However when one door closes......tmos I’m off to Cheltenham to have a privately funded PET/CT scan and full bloods tests. These will then be assessed by my new oncology Professor in Bristol, and if I’ve got the right bone receptors etc. I ll be going forward for Lutetium 177 treatment in Windsor.

Obviously I won’t know anything definite for about a week so I ll update you all as appropriate.

Keep the Faith

J.

User
Posted 12 Sep 2019 at 12:14
Fingers crossed valleyboy
User
Posted 12 Sep 2019 at 16:03
Good luck friend

If life gives you lemons , then make lemonade

User
Posted 12 Sep 2019 at 16:34
Good luck Valley Boy I’ve been looking at this myself today funnily enough.

Best wishes

R

 
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