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"The road ahead"!

User
Posted 29 Aug 2018 at 12:34

Hi Valleyboy

I just took golf up about 3 months ago so still a beginner, never hit a ball in my life. Just thought that I needed something for when I retire in a couple of years. Although I have been told that my life has been shortened dramatically by the mets I try and put that to the back of my mind and have continued working. Hopefully golf will go a long way in helping with retirement.

Glad you are taking life on in as best a way that you can. 

By the way heavy metal rules 🤣

Cheers 

Sandy

User
Posted 29 Aug 2018 at 14:07
Nice to get off direct PCa comments for a while so here’s my golfing tips from a 14 handicap average golfer.

Use a 2nd had set or the cheapest “game improver” clubs that you can get ur hands on to start, because I assure you that if you get into golf in 6–9 months time you’ll definetly want to change them for the latest craze!!

Also get lessons from a club pro, as this is the only way to learn the game properly, as once you start with bad habits they’ll stick with you forever.

Don’t forget that once you join a golf club you’ll be expected to put in 3 cards, (usually with the club pro, or a committee member), to get a handicap, which for men and ladies at the moment is 54! Which basically gives you 3 extra shots per hole, eg. If it’s a par 4 hole you can take 7 shots and still be credited with a par score for that hole. I won’t go into the various formats of the game at the moment, eg. Medal, stableford, Texas scramble etc etc. As you’ll soon get to grips with them as/when required.

Please note that the aim of Golf is to reduce your handicap to your true playing ability asap. Therefore don’t dwell on 54 unless you really need it or you ll soon be categorised as a “bandit”, and will forever be the butt of Mexican jokes from players such as me!!

All the best

J.

User
Posted 29 Aug 2018 at 14:34

Hi J

The place where I work is full of golfers and every summer I have to put up with "how was the golf at the weekend" I had  spoken about taking it up but never actually did anything about it.

So one day a couple of months ago one of my mates brought in a full set of Callaway club's. His mates father had sadly passed away so that is how I came about them. Not the ideal way to get them but no point in them going to waste.

Took 6 lessons with the club Pro but at present my handicap is my golf clubs. Been on a few courses but i will wait till i get more confidence on the course.

Trying to get in the course at least once a week and also the range, trying to fit it into my work shifts. Gives me a focus for when I retire in a few months.

I have never used the word four so much in my life 😂😂. All the gear and no idea lol.

Happy golfing.

Sandy

User
Posted 07 Sep 2018 at 14:46
Ok. Just back from Bristol where I’ve had my 2nd infusion of Ra223. No issues during infusion and all completed in 20 mins. All ok at the moment approx 5 hours after treatment. But once again warned to look out for common side effects, ( as listed previously), and to keep an eye on my temperature.

So barring any ill effects I ll update you all in approx 1 x week.

Keep the Faith

J.

User
Posted 07 Sep 2018 at 21:27

Hi J

Good to know that there are no side effects and hopefully that will remain the same in any future sessions.

I've had a few days break down in Cornwall this week before my latest set of blood tests on Monday. Trying to remain upbeat about the results. Have an appointment with the oncologist next Friday. 

Hope to get a couple of rounds of golf in before I return to work on the 17th.

Take care.

Sandy

User
Posted 25 Sep 2018 at 18:35
Just had full Bloods in Glangwili and a video meeting with the Ra223 staff in Bristol and all good to go for infusion 3 next Friday (5th).

PSA down another 16 points to 403 and ALP down 47 pts to 133 so all good there to.

Also played golf today and cut the grass and Feeling fine at the moment??

No treatment side effects to report on so unless anything else happens I ll update you all after my 3rd Ra223 injection next week.

Ps

When speaking with my onco yesterday, I asked her what were her views on 225-Ac-PSMA-617 treatment, which has recently been reported on as having superb success on PSA No’s and mets in Advanced PCa cases in Germany and South Africa? And much to my surprise, as/when applicable she’s already got that lined up for me. Starting with a Ga-PSMA-PET/CT scan in London, to see if I’m suitable for this treatment. followed by a possible trip to Germany?? However my son lives in Australia and I think they also do it there too, so who knows??

Keep the Faith

J.

User
Posted 25 Sep 2018 at 20:19
Sounds like you have an oncologist who’s really on the ball. I’ll be very interested to hear how you get on with the PSMA scan/treatment in due course. Meanwhile all the best!
User
Posted 25 Sep 2018 at 21:18

Hi Valleyboy

Is the Actinium 225 treatment being funded by the NHS or is it Privately funded. The latest reports look promising.

All the best

Roy

 

 

User
Posted 25 Sep 2018 at 21:43
Dark Warrior—will do

Roy—didn’t discuss that as it was just a point I raised with her during my current Ra223 consultation.

However if/as/when applicable if I’ve got to pay, so be it. And the kids will eventually have to do with a new Skoda instead of a Porsche??😂. Also as you know the scan has to be done first to see if I’m a suitable candidate, so I ll need to cross that bridge first. 🙈

User
Posted 25 Sep 2018 at 22:27

Hi Valleyboy

Is this a treatment for bone mets.

Interested to find out more about it, my bone mets are being kept in check for the time being but under no illusions that it's coming back in the future. So really interested in this.

Sandy

User
Posted 25 Sep 2018 at 22:39
If it’s applicable to a particular patient, that is if the scan shows that the tumour cells are expressing the PSMA molecule (as most do) then the treatment should work on mets that are in the bones or anywhere else. That’s the beauty of it.
User
Posted 25 Sep 2018 at 22:46
Sandy

Yes, allegedly it works well for bone mets with some patients getting impressive results, but it also works for other areas of spread too.

As/when the time comes I ll keep everyone informed re progress with this treatment option. However as I’ve still got a few other options left following my current Ra223 eg. Firstly another treatment holiday, followed by Aberaterone or Enzalutamide, hopefully it will be a while before I go down the 225 route, as in lots of literature about it it’s classed as end-stage treatment! And I ain’t ready for that yet??🤪

User
Posted 26 Sep 2018 at 00:31

Hopefully it will be a long while before you need to think about Ac-225 - they may have brought out a cheaper Porsche by then

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

User
Posted 11 Oct 2018 at 18:20
Ok been busy for the last week or so preparing for my partners daughters 40th birthday party, so forgot to update you all on my 3rd Radium 223 treatment last Week. Well as normal everything went ok, with the staff at the oncology unit in Bristol giving me my infusion in their usual professional manner.

No side effects to date, still golfing, walking, and gardening as required, and I’ve even had my 3 monthly Prostap/3 and flu injections on Monday of this week without any issues too.

Doing fine re-bloods at the moment, so let’s hope that continues so I can go for my 4th infusion during the 1st week of November. As mentioned previously I’m hoping that at my next blood test my ALP will have dropped yet again taking me back into the “normal” range?? Thus vindicating the Ra223 treatment option. And I ll update you all accordingly after the 19th.

Keep the Faith

J.

User
Posted 11 Oct 2018 at 19:11

Thanks for the update J.

After 3 years of needles you would think the flu jab was a doddle, don't know about you but it was a wee bit sore haha.

Keep golfing mate.

Cheers

Sandy

User
Posted 19 Oct 2018 at 16:52
Bloods update——although my current treatment plan is not supposed to affect PSA levels, following this test my PSA is down a further 35pts to 367. Whilst my alkaline phosphate (bone marker) is down 21 to 112 which is back within the normal range for the first time in 20 months.

Some of my red blood cell markers are a bit high but I ll clarify what that means in my video conference meeting with the oncology stafff in Bristol on Monday. Still feeling fine, So if all’s well it’s off the Bristol on the 2nd November for my 4th Radium 223 infusion. Further updates to follow in November.

Keep the Faith

J.

User
Posted 19 Oct 2018 at 17:56
Good results! Very glad for you.
User
Posted 01 Nov 2018 at 15:11
Just back from Bristol after 4th infusion of Radium 223. No issues, all going well, with as stated previously ALP back in the normal range’.

Next bloods and video conference due 19th Nov. So Hopefully ALP and PSA will continue to drop by then and I ll update you all following that.

Keep the Faith

J.

User
Posted 03 Nov 2018 at 12:31

Hi I’m a new member joining the group also

also a valley boy now living in west wales

diagnosis advanced PC localised spread PSA

 

11.8 started hormone treatment and been offered chemotherapy problem 

as I have crohns I have to make a choice it’s been inspiring to read your

posts in truth I’m struggling oh well hear goes Rob

User
Posted 03 Nov 2018 at 12:49

Hi Valleyboy,

Wishing you well keep up the good fight must be tiring all that traveling to Bristol for treatment

regards John.

User
Posted 03 Nov 2018 at 13:23
Thebear

Rhymney valleyboy me so Hang on in there, sorry don’t know enough about Crohns to offer any advice re-chemo or not. Except to say that I’ve had 13 infusions without many problems and I’ve got extensive mets. spread.

However as you ll hear many times on this forum we re all individuals and all cope with things differently. So speak with your consultant and if you both feel it’s right for you go for it. Try not to fret too much, as I too have down days, but you’ve got to keep on top of it as much as you can, and I’m a firm believer in PMA—positive mental attitude. Which definetly helps me cope with the day to day pressures of APca.

J.

John

Thanks for your comment, travelling not too bad as one of my friends from golf drives!! Also I’ve got a few other drivers from the golf and rugby club in reserve so if I fancy a kip on the way back so be it!

Also been really lucky with the traffic so far, no hold ups on way to or back from Bristol 4 times so far, so door to door in app. 2 hours.

Loads of parking within minutes of the hospital so no issues there either. Staff brilliant too even tho they are from the wrong side of Offas Dyke!😂

J.

User
Posted 03 Nov 2018 at 15:21

Hi valley boy

coincidence i‘m from the rhymney valley 

also YM it’s a small world I wish you all the best

with your treatment I hope I’ve got some 

of your spirit

User
Posted 03 Nov 2018 at 15:51
Ystrad Mynach? That’s almost the flat part of the valley isn’t it? 😂And as it’s now known “satellite city” for Kerrdiff!!

You have got the spirit just gotta release it. Loads of treatment options out there with more coming on line all the time.

As/when/if required, I’m even considering treatments in Australialia, South Africa or Germany?

Keep the Faith

J.

User
Posted 03 Nov 2018 at 17:40

 Thanks for the support yes YM is the flat bit

onward and upwards!!

User
Posted 15 Nov 2018 at 18:50

Meeting with oncologist today to discuss bloods and general health prior to Radium 223 5th treatment at end of month. Good news with ALP down to 95, (normal range 30-130). And PSA down another 30 pts. With all other bloods holding up well. So all systems go for last but one treatment at end of month. Also obtained a copy of my initial bone scan in February 2017 where I’m lit up like an Xmas tree with mets all over spine,ribs,pelvis and skull. Can’t wait till Feb 19 to see what they look like now as ALP was 287 in 2017 now 95 so hopefully that translates into smaller/less Met sites? I ll update again following treatment at end of month.
Keep the Faith
J.

Edited by member 16 Nov 2018 at 06:51  | Reason: Not specified

User
Posted 19 Nov 2018 at 15:32
Just had phone call from Bristol. Bloods all ok for this Thursday’s Radium 223 x 5 infusion. However Decembers bloods need to be taken earlier in the month in order for the Radium to be ordered from Norway in time for Xmas!! Well I’ve heard of Xmas trees from Norway but looks like Santa’s bringing me Radium this year too??😂
User
Posted 19 Nov 2018 at 15:51

I hope you’re not selfishly starting World War Three on your own!

Look what happened when radioactivity and Norway combined last time:

https://en.m.wikipedia.org/wiki/Norwegian_heavy_water_sabotage

Cheers John 😉

 

Edited by member 19 Nov 2018 at 15:55  | Reason: Not specified

User
Posted 19 Nov 2018 at 16:31
Thanks John. Good link. I also notice that Richard Harris played a character by the name of “Knut Straud” in the film Hero’s of Telemark. So as I’m currently full of my own version of “Heavy water” I may ask play him in any remake??😂
User
Posted 30 Nov 2018 at 08:01
Ok. Had radium 223 infusion No 5 of 6 yesterday and so far so good. Bloods still all good and as stated previously ALP back in the “normal” range, so nurses in Bristol happy with that too. Last infusion due 27/12. So unless anything else crops up I’ll update again after next bloods on 14/12.

Keep the Faith.

Seasons greetings to one and all

J.

User
Posted 30 Nov 2018 at 09:15
Glad to hear the Radium 223 treatment has gone smoothly and you are coping well with it.

Ian

User
Posted 30 Nov 2018 at 10:50

Great to hear that you are making good progress Valleyboy.

Best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 04 Dec 2018 at 19:05

Thanks for the inspiring support ive found 

the support group brilliant great to meet up with people in person I can’t message yet for some reason 

User
Posted 04 Dec 2018 at 19:24
The bear—don’t panic we do like you😂 it’s just that you need to post online for a while before they give you access to personal messaging. (Not sure of timescales).

All the best.

User
Posted 05 Dec 2018 at 14:19

Hello Braddalad

 

I saw your post on Acupuncture to help with the hot sweats. My husband suffers really badly with hot sweats from Zoladex injections.

Do you mind me asking how often you have acupuncture?

User
Posted 14 Dec 2018 at 16:45
Just had blood results for 6th and final Radium 223 infusion on the 27th. ALP down again to 82. With PSA back up 23pts. But as this treatment doesn’t really affect the PSA all previous reductions have been a bonus. All other bloods seem ok so it’s another meeting with my Onco on Monday and if all’s well then off the Bristol for the last time on the 27th.

Just a point as it’s seems to be working well, eg. A marked reduction in my ALP levels, has anyone out there had more than 6 sessions of Ra/223? And if so what were your final results?

User
Posted 15 Dec 2018 at 12:14
Thanks for the update. It’s good to hear from you.

Hope the Radium 223 does a good job.

User
Posted 17 Dec 2018 at 15:15
Just back from meeting with oncologist and video call to the nurses in Bristol. Bloods all ok for 6th and final Radium 223 treatment on the 27th. Then if all goes well, other than another full blood test on the 11/02/19 and a scan sometime in late March it’s a 3 month treatment holiday for me. Yippee!!

We had a Brief discussion on way ahead, which may include immunotherapy, various trials etc etc. All to be discussed in more detail in March/19.

Also 2 year diagnosis anniversary during 1st week of Feb so as Delia once said “cmon let’s be havin yer”!!😂

Nadolig Llawen a Blwyddyn Newydd dda. = Merry Xmas and a Happy NewYear —to all.

Keep the Faith

J.

User
Posted 17 Dec 2018 at 16:11

Hi J

It will be good for you to get a wee break.

I'm every 3 months now myself, next meeting with oncologist in Jan. But it's a good feeling knowing no more hospitals for a while.

Have a great Xmas and all the best for the new year.

Onwards and upwards.

Sandy

User
Posted 17 Dec 2018 at 18:20

Good news valleyboy best wishes to you and your family i’m starting aberiterone this week hoping for the best.

Have a good christmas to  everyone

R

User
Posted 17 Dec 2018 at 21:10

Hi Valleyboy ,

               I have read your first post and whilst my diagnosis was not as severe as yours , I had PSA of 19 odd with Gleason 6 + 7 , Tumour the size of the gland mid 2014. Mine continued to spread outside . Went to lymph nodes in groin , chest and now travelled to my spine . PSA now 500 . So far I refused Chemo . Not keen on the stuff . still debating it . I came across a guy called Chris Woollams and canceractive.com . I read his book , How to Beat Cancer . The guy got a degree in Biochemistry at Oxford Uni and specialised in Cancer. His Daughter got Brain Cancer and that's why he set the site up etc . I am still building my own treatment plan from reading his book and using the site . At the moment I do the following 

 : Take Vitabiotics Vit D every day , Vitabiotics Immunace Mon / Wed / Fri , Cannabis Oil twice daily , Apricot Kernals ( 8 ) morning , every meal and evening and Biobran 1 sachet of an evening with my herbal sleep stuff 

I take Ayurvedic medicine for Hot Flushes as well as Vitabiotics Menopace Plus 

Only Oncologist medication is Bicultamide 150mg daily ... I stopped taking Zoladex and reverted back to Bicul. after horrendous problems with Insomnia on Zoladex . I am also in discussion with my oncologist regards Chemo options after Cancer went to my spine in Jan 2017 and PSA rose to 500 summer 2018 . At the moment plan is to monitor PSA and continue what I'm doing . Chris Woollams is an amazing guy . Also I have found from researching about Gut Health ( thanks to Chris ) another amazing bloke ... Dr Stephen Gundry MD and the Plant Paradox .... I am building on this knowledge , trying to build more knowledge about NK Killer cells too . I hope this helps you and very best wishes with your journey . I don't get much time but I'm hoping to look through the site to get some information  to help me , especially from fellow lads having a tough time of it all . Good luck mate 

Bill&Ben67

 

User
Posted 27 Dec 2018 at 15:10
Ok, just back from Bristol following my last Radium 223/6 infusion. So that’s this course of treatment finished for now. Therefore other than full bloods during 2nd week of Feb. Followed by a scan sometime in late March, its a treatment holiday for me. 😂 As outlined earlier thats also the end of basic conventional treatments for me with immunology/trials/new innovations now on the horizon. Obviously I ll keep you all informed as to the “way ahead” as/when I know it. I ll also update after bloods in Feb. So until then Happy New Year to all.

Keep the Faith

J.

User
Posted 27 Dec 2018 at 16:11
Happy New Year to you too.
User
Posted 27 Dec 2018 at 16:13

All sounds good enjoy the holiday and a happy new year  R

User
Posted 27 Dec 2018 at 21:02

Hi Valley boy,

Wishing you all the best in your treatment I am sorry if it goes over my head a bit as i don't understand the amazing treatments and cross treatments they do for you and others, good luck.

John.

User
Posted 12 Jan 2019 at 09:05
Just a quickie? Went shoping yesterday and suddenly felt very light headed when walking around the store. In fact if I hadn’t had a trolly to hang on to for a few moments it felt a bit scary. All ok again later in the day and now back to normal??. Took BP when I got home 90/66 so a bit low?

So basically has anyone else out there had had such symptoms and if so what did you do about it?

Keep the Faith

J.

User
Posted 12 Jan 2019 at 10:24

Hope your ok now I had a urine infection after biopsy led to a trip to A&E by ambulance after I had passed out due to low blood pressure antibiotics for a week then ok hope this helps R

User
Posted 12 Jan 2019 at 11:57
Thanks, Yeah all ok now and gearing up for the big game later—Quins v Bargoed!!😂 with 4 x days golf booked in Portugal next week!😜

Hope ur feeling better too?

J.

User
Posted 12 Jan 2019 at 18:04

As someone prone to low blood pressure, best way is to make sure you are drinking plenty of water. Sipping rather than gulping throughout the day will keep you hydrated and return your blood pressure to near normal. It is very easy to not realise you have not been drinking enough.

Best regards

 
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