"The road ahead"!

I can't give any advice re chemo as we haven't been on that treatment but we have just about had everything else. At the moment on Abbiraterone/ Raduim 223/ and Zolodex .

Those first agonising weeks and months after diagnosis are still so fresh in my mind but they do get better and especially after you hear of stories a bit like our own Trevor was diagnosed 4 years in May with Ext bone mets and a PSA of 13000 . He is still here a bit wobbly around the edges but still driving / walking even helping doing gardening last weekend and that is nearly 4 years after being diagnosed.

Hope this helps.

BFN

Julie X

Hi Valleyboy

Don't know if it's the Welsh valleys but, if so, a special welcome to another Taff. It is rough that you find yourself here but the forum is a brilliant source of advice and humour (often of the dubious variety) and knowledge so you are absolutely in the right place.

My OH is 65 with advanced PCa and multiple mets plus a history of depression and anxiety which doesn't help. He's been helped enormously by a very active hospice care team who, once he let them through the door (took a lot of persuasion) have been absolutely fantastic in helping him deal with both the physical and psychological aspects of the diagnosis and the disease. Don't know what we'd have done without them. So if you aren't already linked up to a palliative care nurse/doctor, please do ask your GP or consultant for an immediate referral - and then take advantage of all they have to offer. The brilliant thing about them is that they respond to you as a person rather than as a patient. So my OH likes going to the pub for a pint, and he likes cycling. Rather than telling him to stop either of those options (both very very important for his general well-being) they've encouraged both - within reason of course - and are constantly adapting the various tablets he's on in order to help him live as normal a life as possible. Plus it's fantastic to know that they are there and ready to leap in day or night if we need them, as we often do.

In terms of treatments, the Toolkit that you can download or send for from this site is very helpful but it's also useful to ask members about their experiences direct. As Julie has said, CoIU_FC's chemo blog is really helpful plus you will find other men with very high PSA results who are still going strong - Sallyyy's husband is just a few months ahead of you and has just finished chemo which has brought his PSA tumbling down for example.

Although the awfulness of the diagnosis never goes away, things will get calmer I promise you. Particularly once the chemo is underway and having an impact on the cancer. At the start things just feel out of control but it does improve. Especially, in our view, with the odd pint!

Pob lwc. Take care.

Eleanor

Valleyboy, I've just had my second infusion and there were no side effects worth a mention over the three weeks. First week if pushed, I would confess to a bit lacking in energy and a bit headachy behind the eyes, but trivial, really. Second and third weeks, completely back to normal. My blood results were normal and my PSA was knocked back markedly. So I'm a happy Easter bunny! Hope it goes as well for you, too.

AC

Days8/9 (chemo/1)---still all ok with pain tablets down to "as required" instead of every 6 hours--therefore only needed 2 yesterday, whilst so far none today. 3rd hormone injection today and prior to receiving it Tuesdays blood tests indicated all ok for injection--however there was also a 'small win' in that for the past two years I've been pre-diabetic (47), which then rose to 49 (diabetic), at the same time my elevated PSA was diagnosed, (Feb/17). Today my blood sugar reading was 40!! So no diabetes treatment now required as readings are well under the proscribed level. Please note I think this must be down to my dramatic diet change over the past 3 months, i.e. No processed foods, plenty of fruit and veg, no red meat and soya substitutes instead of most dairy, plus no alcohol??? This combined with daily exercise, either walking and/or stationary spinning bike, has resulted in a weight loss of 2 1/2 stone, which, as stated previously was needed!! So all in all a good day, let's hope it lasts?

Thanks

Keep going strong Valley boy,

There are many years ahead for you

Regards

Dave

With advanced PCa, many oncos will say the PSA score is less important than how you feel. You started high; downward trends are good, upward trends are bad, and apart from that, go with your gut. I think Trevor has been in the 3000s for quite a while now, and there are others trundling along with numbers that for other men would be really bad news.

See above thread--Onco just phoned 3 days early!!! But all ok as my Sept PSA has halved to 112 and she even expects it to reduce further by December,!! so unless anything untoward happens that's me off chemo and steroids till at least 18/12/17. Obviously I ll keep you all posted as/when applicable, but as I haven't had a pint since January I'm just off out to reacquaint myself with a Guinness??
Take care all, J. 😀

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

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.

Thanks for replies above--just been confirmed that I now attend my local hospital on Monday, 10th April, for pre-assessment visit and "bloods", with chemo (6 cycles every 3 weeks), then scheduled to start on Tuesday. I have also been informed that I will continue with my current hormone treatment' (Dergarelix), during these cycles. As with others before me on this forum I'm hoping to post regular updates as to my progress, ----1) to help other 'newbies' who are also just embarking on this road, and 2) to help me remember how I feel/felt during each 3 week cycle---still can't believe this is happening to me, as up until the end of January apart from a few aches and pains which unfortunately I put down to the aging process, coupled with golf 2/3 times a week, and cutting over an acre of grass without a ride-on mower, I feel fine??? However here goes and I start with some words from my favourite film "The Gladiator" ------"on my command unleash hell"!!!!!!!!!!!

Not sure about the "on my command" bit but on here, any mention of ride on mowers can unleash a kind of hell :-) Good luck to you over the next few weeks and months

Ok here goes--see original post to see where I'm coming from----just had 1st chemo (Docetaxel) session today (10.30-15.00), consisting of saline drip/steroid drip then chemo infusion.
Also been given steroid tabs to take for next 3 weeks till next chemo cycle.
I realise it's still early in the treatment plan but At the moment I feel fine, been out for a shortvwalk, with no sickness, appetite or taste loss. Also told to carry on with current tablet regime and add others given today at prescribed times, that means I'm now on 12 tabs a day!!! All being well i ll update you all tmos
Cymru am byth Eleanor!!--(Valleys Wenglish)!!!!

Another Valley boy here butty.
Born in Llwynipia hospital . Lived at Clydach Vale (Tonypandy) till we moved to England
All the best to you.
Ray and family.

Edited by member 12 Apr 2017 at 16:53  | Reason: Not specified

Days 6/7--(chemo/1) update---all ok over last two days, out walking both days and cut the lawn this afternoon. Glad to be back to "normal" as I've got Blood test tmos for next hormone injection on Thursday.

I see you are planning to travel in W Wales in your camper, is that where you live. have you come across WW Prostate Cancer Support Group. they have a web site. We live in W.W.and we go to the group lunches and meetings, if you are a member see you there if not you would be very welcome.

Leila

Ok--days 16-21 (chemo/1) all ok- no undue side effects, so it looks as if I've got through chemo/1 unscathed?? even my beard which I shaved off 3 weeks ago has grown back!!
Start chemo/2 tmos and whilst I'm still going to maintain this blog for reference purposes, unless any side effects kick in, which I will comment on immediately, it will now be on a weekly/as required basis. Hope everyone out there is battling on, stay strong, the summers on its way which for us in Wales usually means one day of glorious sunshine sometime between June and August, interspersed with the occasional shower!!!!!!! Then again thankfully I do live on the right side of Offas Dyke so I can't complain can I?? Take care---J.

Glad for you, Valleboy.

Wishing you continue to carry on well with your chemo... And your beard to grow back splendid.

All the best for you,

Lola.

I see my Onco every 6 weeks. She gives me bloods forms for the next 2 chemos and always ticks the PSA box as well as all the others she wants tested.

Urea and Electrolytes, Liver Function Tests, Full Blood Count. With PSA, same as mine. AC

Sometimes the PSA rises while on chemo and it is not indicative of failure. Sometimes prostate cancer cells produce more PSA as they die off and/or as they try to fight off the attack.

Early indication of pneumonia?

Probably not, I'm over sensitive to any signs of pneumonia at present since it has totally f'ed up my summer. My pneumonia was only picked up from an X-ray.

Delighted that your Chemo is finishing and your PSA results are looking good. I suspect that your scan results will be much better than before, hopefully.

I am now over 4 months in to my chemo holiday (post chemo) and enjoying life. I am back at work part time and have had a good summer so far. I meet my Onco again in September, but I pretty much know the next steps as he has already told me as such.

My PSA has already risen to 13.3 so action will be required. I will be having a scan to detect the progress of my Mets, I will be having a further biopsy so that DNA testing can be carried out to determine what future treatments will work. Chemo works very well on me so my Onco is keen for a further 6 rounds of that whilst, as he puts it, I am fit enough to take it, before they give me the softer options in later life. If I am truthful I would prefer ABI if it proves to work with my DNA, but the DNA test will be my journey route in the longer term. They get the results from some lab in Arizona apparently.

Anyway, whatever happens, the journey continues.

All the Best Valleyboy

Dave

I think the standard now is ten cycles of docetaxel or less if the side effects become intolerable. I'm now in a chemo holiday, too.My PSA has stabilized at 1.1 and there is partial evidence that mets have abated. My understanding is that is my current treatment (like yours, zoladex plus prednisolone, though I expect to be swapping the steroid in October) could be followed by rechallenging the PCa with more docetaxel at a later stage and of course the other chemo treatments remain available.

My main reason for stopping the chemo is that it has probably done its job and we are into diminishing returns, plus unwanted side effects. In my case, the increasing breathlessness I reported in cycles 4-6 was unfortunately caused by multiple pulmonary embolisms (lung blood clots) for which I'm now self injecting with Clexane. I shall need six months to get over those anyway, so better not to endanger that recovery with further chemo.

As you can see, my case is a bit unusual, though our treatment is similar and future chemo options remain available.

Good Luck.

AC

Enjoy

Good on you! I'll raise a glass to you (any excuse).

R

Cheers

Devonmaid

It's great to read some positive news. Lets hope for even better by December.

Happy to hear so.
Good news are always welcome. Made my evening a bit better 👍.
Xx
Lola

Great news

Dave

All in all side effects have been manageable so far.

Hope that helps

A

Hi Sorry to hear your news;

I have had both Docataxel and Cabazitaxel and i found Cabazitaxel was no where near as harsh as Docataxel

Don't write the golf off just yet.

Anything you want to know just give me a PM

Si 

Valleyboy, I'm a bit ahead of you in the cabi race, but following in Si's footsteps. Just completed my first cycle and found it comparable to my experience with docetaxel. First four or five days some nausea, for which domperidone wasn't a great help, then smooth sailing. Bloods seem to have been unaffected. Hope yours goes well.

AC

That's a lot of chemo, Dave. I wondered if you had been tested for DNA repair gene mutations? If you have one (about 20% do) you might be eligible for a trial of a PARP inhibitor drug.
Good luck!

Valleyboy, my experience (now in fourth cycle) is that PSA changes are much less dramatic than with docetaxel and start on the downward trend from your current cycle. I certainly hope that is true! You will need some big changes, though.

I hope you get them!

AC

Hope things continue to go well with the cabazitaxel.

I can’t answer your question about your alkaline phosphate but I’m sure someone who knows more than me will come along.

It’s a nice sunny morning where I am, hope it is where you are too, enjoy the golf.

Ian

Well it certainly suggests that there is less bone activity than before. Enjoy the golf :-)

I hope your PSA continues to fall.

Lucky you didn't get drugs tested after the golf.
At my course there would be cries of "bandit"!

Ian

Thank you for the update Valleyboy - I always read your posts with interest and wish you the very best with your ongoing treatment. 

Just back from check- up at Marsden for trial that I am on. Good chat with doc. It’s inspiring what they have coming in terms of new treatment approaches. Definitely keep the faith!

Sorry to see that your PSA has remained high but some on here have had great results with Radium 223 and less travel will be a blessing. Fingers crossed for you.

Here it is Valleyboy

https://community.prostatecanceruk.org/posts/t15782-Medical-science--progress--and-hope

You sound quite positive Valleyboy. Keep golfing. I am too!

wishing you all the best.

Ian

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

J.

Body of a god—-pity its Buddha!?!😂

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

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

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.

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

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.

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.

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

Great to hear that you are making good progress Valleyboy.

Best wishes

Dave

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

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

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.

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

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

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

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