It's been a while.....

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User

Posted 17 Jul 2015 at 00:24

I feel very guilty as it's been 10 months since I last came online to the PC Community page (loving the new look by the way).

It's been a very up & down 10 months from terrible as Dad had Spinal Cord Compression & was in Guys Hospital for weeks & could barely move. Then he did a 360 on us & was given a new drug, a fancy chair & all of a sudden he started to feel good, got his movement back & was soon home again.

But today's normal monthly results have shown Dad's PSA has risen sharply & hit 1'000, Bone Mets have spread to Dad's breast bone (now slowly creeping it's way up, already in legs, hip, pelvis, spine, shoulder (slight spotting in shoulder) & his right bum cheek which he has been finding very painful to sit on has also showed up in the scan as highly agitated by the bone Mets.

He has been taken off of the drug he was on as it's now not working & has been told he will need to be clear for a month before starting on a funded drug (of which my Mum couldn't tell me the name of as she couldn't remember)

It's such a roller coaster - This November will be the 5 year mark from Dads initial diagnoses of advanced prostate cancer, psa 1472 & Bone Mets. He's such a trooper, when I think of all the things he's gone through, side affects he's dealt with., hospital trips etc I'm sure this is just another curve ball he will deal with head on but I do worry (some days more then others) and every once in a while (or 10 months) I feel the need to 'share things' and find myself hear rather than talking to anyone around me.

I'm not even looking for any answer's or even replies.

I think I just needed a platform to breath on & somehow I find my way back here to all those lovely ears ready to listen

(as I say to myself quite often, you're allowed a little wobble from time to time - now head up, smile on & off we go)

Cat x (aka Daddys Little Princess)

User

Posted 17 Jul 2015 at 23:51

Sorry to hear of your Dad's issues, one thing I've learned in my short time here is no one minds the odd wobbly.

User

Posted 18 Jul 2015 at 09:53

Great to hear from you Cat I remember your thread from before. It's always an anxious time when a drug fails and things start happening. I am potentially going through just such a period and your 'normal' changes until you reach a new normal. Five years is a good run. has your Dad had chemo or is that still in the box? Anyway just saying here and this is the place to get rid of those uncomfortable thoughts and move on. Wish you and your Dad more progress in your journey.

User

Posted 04 Aug 2015 at 21:07

Thanks for the kind replies it's been very appreciated.

Dad showed me a letter he received today regarding the new spreading & I asked if I could photocopy it, so I now have all the treatments he's been on..

Diagnosed Nov 2010, PSA 1472

Dec 2010 LHRG , prophylactic left femoral nail inserted (leg to hip)

March 2011, postoperative pelvic radiotherapy (20Gy)

April 2012 - disease progression - started TAK 700 clinical trial, PSA & Clinical progression after 22 cycles. Prednisolne stopped due to bleeding (attributed to meloxicam prednisolone & H pylori infection)

April 2014, completed docetaxel 7 cycles (chemo), Zoledronic acid stopped due to transient renal impairment

June - Sept 2014, on IPSEN clinical trial, maintenance tasquinimod versus placebo, stopped due to progressive disease

Oct 2014, palliative radiotherapy to lumbar spine, due to Spinal Cord Compression

Nov 2014, start enzalutamide

Jan 2015, SCC T10 (20Gy in 5)

current completed cycle 9 of enzalutamide, disease progression rising PSA. PSA now 1001 bone scan shows new frontal skull lesion & larger sternal lesion.

Dad has an appointment with a professor at Guys on Thursday for further discussion of another drugs trial, he remains in large discomfort. I am finding myself crying most evenings (which really isn't like me) seeing him in such pain & the new spread is very concerning.

I find myself looking up all of the above mentioned trials trying to understand what's next in terms of the treatment he can receive. Dad is still smiling & moaning that I talk too much when I visit - so that's nice, he still has his sense of humour :)

User

Posted 04 Aug 2015 at 21:14

Hello Cat
Sorry to hear that your dad has major problems.
It's understandable that you feel the need to cry, he is your lovely dad after all and he is suffering, even if he is trying to make light of it.
Feel the need to rant? Shout at the world?
Well come and tell us. As you know from before, listening is what we are really good at.
Wish I could wave a magic wand, for you, your dad and all the men and wives/partners on here in thrall to this horrible illness.
Keep strong, smile for your dad, even if you don't feel like it.
All the best
Sandra

We can't control the winds - but we can adjust our sails

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