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User

Posted 11 Aug 2018 at 21:35

Ok for those tracking my progress I’ve just completed day 2 after my first Radium 223 treatment and to date I feel fine with no undue side effects.

Played golf this morning, then went to watch the “Swans” beat Preston. Then popped in the local Rugby club on my way home for a few “Becks Blue” and a salad roll, and yes I am the only one down there drinking it!!😜

Bit tired now so having and early night, but as we ve been awake since about 5 am with the puppy it’s not really that early is it!?😂🐶

Keep the Faith

User

Posted 12 Aug 2018 at 03:27

A salad roll :-/

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

User

Posted 12 Aug 2018 at 06:57

Body of a god—-pity its Buddha!?!😂

User

Posted 15 Aug 2018 at 21:10

Ok just a quick update on Day 6 of my once a month Radium 223 treatment. Well they said fatigue would be a major factor and they ain’t kidding as for the last 3 days I’ve been completely wiped out by the afternoon. However an hour shut-eye in a comfortable chair sorts that out??

They also told me to expect increased bone pain, (previously had very little), for 36 to 48 hours and I’ve had that too, but again easily controlled by taking one paracetamol and two ibuprofen as required, and as I hope the increased pain is a sign that the radium is attaching and working itself into the “growths” on my bones then I’m happy with that!

Other than that all ok, no probs with appetite or toilet habits so let’s hope these little niggles wear off as I move into my 2nd week post 1st treatment.

Keep the Faith

User

Posted 27 Aug 2018 at 19:19

Day 17 of my monthly Ra223 treatment.

And other than fatigue in the afternoons all ok. (Also adding to my tiredness, my mother’s who’s 90 has recently fallen down and broken her hip which means I’m driving a 160 mile round trip every other day to see her in hospital).

Bone pain virtually gone with just the occasional paracetamol and ibuprofen needed after Golf or a mowing session.

Had my pre next session consultation in the week ( FaceTime call between West Wales and Bristol), and all ok except height still the same 5’ 5”!!😂 but slight further weight gain. Bloods taken next day with results due tmos. So if that’s all ok I ll be off the Bristol for my next session on the 7th Sept. as usual unless anything unforeseen occurs I ll update after next session.

Keep the Faith

User

Posted 29 Aug 2018 at 09:40

Quick update—just had my blood results and all ok for next Ra223 session on the 7th Sept. However as I’d been told prior to my 1st session that this treatment doesn’t really effect PSA, I’m particularly happy that my PSA is down over the month by almost 200 points to 418?? However my bone marker, (Alkaline Phosphate) which can be affected by this treatment is up 42 to 182?? Anyway I ll keep an eye on these stats after session 2, to see if there’s any trend developing?

Therefore has Anyone with experiance of Ra 223 come across similar treatments outcomes previously.

Thanks

User

Posted 29 Aug 2018 at 10:17

The all phos result might just be a transient flare related to the treatment. Stay with it!

User

Posted 29 Aug 2018 at 10:40

Thanks for that info. Dark Warrior’, and don’t worry I ll hopefully be riding this treatment plan for the full 6 infusions and then reviewing the outcomes as/when appropriate.

User

Posted 29 Aug 2018 at 11:07

Hi valleyboy

I haven't posted for ages and decided to have a wee look at some posts. I have read your story with interest as it may be the route that I may be going too.

I've had PR, RT, Chemo and 3 monthly Zoladex implant. I know that in the not too distant future I too will need further treatment as I now have bone Mets, diagnosed last Jan hence the chemo.

Have my next appointment in 2 weeks time with consultant to map out the future. So really interested in your posts.

I'm 58 and just took up golf and loving it, should have done it years ago. Anyway stay strong.

Onwards and upwards.

Sandy

User

Posted 29 Aug 2018 at 11:27

Sandy

Glad my posts may have been of some use to you and that whatever treatment plan you follow works out well for you.

And yes I still find that even 18 months after a rather sobering initial diagnosis I mostly continue to enjoy every day with just fatique as my worst enemy.

Re- golf go for it—as after my initial diagnosis I couldn’t play for 6–9 months and really missed it. However during one of my specialist oncology consultations at the start of this year she said, “listen to your body”, and if you feel ok play, if not give it a miss, so that’s what I now do and usually mange to play twice a week without any problems.

Other than that I’m still gardening, cutting grass and walking the dog on a regular basis, and although whilst I still maintain a dietary plan, ( ie no processed food, red meat and limited dairy products, plus no alcohol), it’s not as rigid as at first, which has resulted in some, (most) of my initial 1 1/2 stone weight loss being put back on!! However I’m still feeling fine and as most of my treatment infusions are weight based they just have to give me a bit more product to compensate!!😂

Take care.

Keep the Faith (Northern Soul Rules).

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

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

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.

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

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

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