"The road ahead"!

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

 hi Valley boy  baldyman here,

i have had 3 chemo sessions with a fourth next week, for me i have had no sickness and feel ok, last week however i picked up a viral infection that has been treated with anti biotics.

I cannot say that everyone feels ok but there is plenty of support out there, there will be good and bad days  but chin up mate, my psa was 242 its down to 19 !!! and i am a T4 

take chemo as you find it mate its not as bad as it used to be 

take care 

Baldyman

Good luck with the chemo, my OH had 6 session this time last year and had very few side effects .he still worked everyday just at a slower pace .Nearly 1 year on his PSA is 0.01 undetectable.I hope your as lucky
Best wishes
Debby

Fingers crossed that all goes smoothly for you. Good to have another (potential) Welsh rugby supporter on the site... lots of otherwise lovely folk here who prefer to cheer for the English team. How weird is that!

Take care.

Eleanor

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.

Thanks for the replies I find they really help----
Day 2 (of chemo/1) update---no issues at all---food still tasting fine, 30 mins on spinning bike this morning, whilst this afternoon I changed the fuel pipe and plug on the mower, drained out the old fuel and cut the lawn!!!! I know I know, take it easy, but at the moment the steroids seem to be giving me so much energy I may even go back out later and cut the other lawn in the dark!!!!! Well maybe not, as I've now settled down to watch the footie with a nice bottle of no-alcohol Stowford Press!!!!! Not quite like the real thing but I've made a conscious decision not to drink until I finish the chemo cycles so I'm going to stick to it, the boys down the rugby and golf clubs can't believe it!! Anyway onward and upwards and let's see what tomorrow brings.

Day 3 (chemo/1) update--still all ok ----but wide awake at 1am last night, (steroids)? And up twice in the night for ablutions!! So bit tired today but still managed to walk around the golf course supporting the boys in their 1st match of the season. Due to bone mets ive Been advised not to play golf till I finish chemo, but then again it's a small price to pay if the chemo works and Gets me back on the straight and narrow, even if it is for an unknown time? Read about the "add asprin" trial today which suggests that taking 75mg of aspirin daily may prevent bone metatarsis progressing? Obviously as I'm so early into my treatment I wouldn't take anything without running it past my Onco, but I've been informed she's gone away for easter??? Has anyone else heard anything about this aspirin development?

Day 5 (chemo/1)--what a difference a day makes??--got up felt ok--had brekkie etc ---went for a walk about mid-day came back and whoosh the fatigue hit me--had to lay down on couch and didn't feel up to much till about 5pm ---also back on pain tabs as when I woke up my shoulders were sore-- didn't fancy any food so had a complan" but managed some fish for dinner so let's hope tmos is a better day? Ps "the Swans" lost again what a day!!!!

Keep on trucking!

E

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?

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.

AC--how are you getting your PSA readings after each cycle? Because I've been told I need to complete at least 3 or 4 cycles before I get any further blood tests or scans to see how well, (or not) the chemo and hormones are working. thanks--

Same for me, bloods (FBC, renal, liver, etc.) the day before, if they don't like the look of the bloods they won't do the chemo. If no bloods are done, no chemo!

Ps--I've just read Dave Stuart's post from the 3rd May 2017, very encouraging to know about other treatments and I really like his "strap line" too---especially the bit about " incurable but treatable"-----thanks for that Dave.

Simple matter on the blood tests. I have a stock of forms all of which show the required tests, including PSA, as printed out by the Oncology Nurse at my last three weekly meeting to approve the next cycle. The Chemotherapy Nurse during the infusion puts the relevant figures: Hb, WBC, Plts,. Neuts and PSA into my personal treatment booklet. Perhaps all hospitals don't do this? If not, why not?

AC

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

Weeks 2/3 of chemo 2 update--other than a muzzy head for a few days in week 2 and a bout of the dreaded 'night sweats' after my 5th hormone injection last week all ok. So once again during this cycle only real side effect seems to be a few days fatigue spread out over the 3 weeks. Anyway off out for bloods this morning and If all' s well then it's Chemo/3 on Thursday. As previously I ll keep you posted as to progress. J.

Nice one - tough breed you Valley boys!

E

x

Chemo/3 week 2 update--much the same as last week however for the first time in a cycle my headaches and general lightheadnesses on waking have continued into week 2? Other than that all ok with appetite taste etc unaffected. I've also had a few additional days this week where I've been completely knackered in the afternoons, days 11--13, however this may well be down to me doing too much the day before feeling tired--as at the moment my mind-set is-- if you feel up to it do it !! Anyway as stated previously next week I've got both hormone injection and chemo infusion on the same day so let's see what that brings? Ps I've also got a C T scan on Tuesday to re-check my lungs as on my original scan in March some nodules were detected in this area so they are having another look to see if any changes are apparent? And again I ll post results next week in my final update from this cycle. All the best J.