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Newly diagnosed with metastatic prostate cancer

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User

Posted 06 Jul 2017 at 11:37

See the last post in this thread:

http://community.prostatecanceruk.org/posts/t12982-Going-back-to-work#post160397

I'm not saying I told you so. I am saying you need to consider this very carefully.

At the start of May 2017 I was going to the gym three times a week - 35 mins of aerobic exercise, followed by leg curls and extensions, stomach crunches, lower back extensions, stretching, etc, on every session.

Then I got pneumonia. For the last two months, no gym, because I've been enfeebled by pneumonia. I don't know when things will improve. My quality of life at the start of May was a 10, now it's a 3.

Think very carefully.

Edited by member 06 Jul 2017 at 11:39 | Reason: Not specified

User

Posted 06 Jul 2017 at 20:28

hope this helps

diagnosed 30mths ago with spread to bones, given 3yrs, have had the docetaxel and some RT, am on 3mths HT treatment, last scan has shown all mets have shrunk including prostate, so the years should be extended, its all a bit in a nutshell but you don't need my life story, trust in the treatment and the oncos

also get in contact with McMillan my nurse is great

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 06 Jul 2017 at 21:13

NIdge makes a good point. Do you have a local hospice? It's not only for the end of days but they are very supportive towards people with incurable illnesses. We have a hospice nurse that helps us much more than our GP and she arranged counselling for me when I have been struggling. There is complementary therapies, reiki etc and day hospice for when people need a break, my hubby enjoyed his stint there as he was able to talk frankly with other people who were ill.

Also has anyone spoken to you about PIP? Please direct message me if you need support with that but you may be entitled to financial support and a blue badge if things get worse.

Kind thoughts for better days ahead. Ps we've been looked after by our hospice for over six years!

Devonmaid

User

Posted 07 Jul 2017 at 10:03

Thank you
He's out of hospital and back to work today! Neutrophil count was 16.2 (a bit up from the danger zone of 0.3!) so hospital now don't think he needs to take any special precautions. No infection was found but given antibiotics just in case. Will have plenty of questions for the Oncologist next time. My husband enjoys his work, although above normal retirement age, and it keeps his mind off other things. We did ask Oncologist about work as he uses public transport and were told OK, I wonder if she will change her mind when we next see her.

User

Posted 19 Jul 2017 at 21:30

We saw a different Oncologist yesterday. Suggested a lower dose Chemo and starting the Filgrastim injections earlier and also having his bloods tested next Tuesday. Chemo went ahead today and all seems OK.

User

Posted 24 Jul 2017 at 10:44

Hi hiitsme

Your journey has been almost a mirror of mine. Was diagnosed Sept 2016 PSA 1000+, Gleeson 9.5. Hormone therapy started straight away, with a PSA down to 130 within six weeks. Started chemo (Docetaxel - 6 session, three weekly) PSA went to 0.15 after two sessions; having had a scare with very low white blood cell count along the way. But developed anal abscess that became a fistula and need surgery to correct (ouch!). After surgery was fully healed chemo was suspended as it was thought that the remaining sessions wouldn't be helpful but I stayed on the hormone therapy.

A blood test in March revealed that my PSA had risen to 11 and it was decided to resume chemo again. As they also wanted to start injections to support metatistised bones I needed to have an abscessed tooth removed; this took three weeks to heal. Having started chemo again I've just had the second cycle to this new regime and my PSA has risen to 31. Obviously this is very disappointing but I'm hoping that all these new interventions will get on top of it but only time will tell. Feeling good at the moment and I'm sure it will come around eventually.

Hope this helps in some way and underlines that it's not a straightforward journey for any of us. Best of luck and best wishes for your on-going journey.

Boyd

User

Posted 27 Jul 2017 at 12:04

Bloods tested Tuesday 25 July (Day 7) WBC 6.2 and Neutrophils 4.3 so told all OK this time round
PSA taken 18 July was 4.9

User

Posted 27 Jul 2017 at 12:12

Hi Mini-thumper
Thanks for the support. My husband is still in the early stages of treatment and so far things seem to be going quite well with a few blips. I do hope that your treatment starts working soon or they can come up with something else that will work. I am finding it all a huge learning curve.

User

Posted 09 Aug 2017 at 20:42

Chemo 3 went ahead as planned today but sticking to the lower dosage as last time. PSA on 25th July was 2.8 so that is really good news. From over 1000 to 2.8 is a great reduction in 6 months.
Also added Zoledromic acid to help with the bones.
No real side effects from Chemo this time so hopeful that will continue.

User

Posted 09 Aug 2017 at 20:47

That's a great reduction :-)

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

User

Posted 11 Aug 2017 at 23:38

Fab news on the PSA reduction , Trevor was on Zoladronic for nearly 3 years.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Aug 2017 at 08:43

Spoke too soon. Thursday he arrived home from work shattered and exhausted. He looked awful and as if he had flu. Also in pain and poor appetite. Eventually he agreed to take a couple of paracetamol. As he had a very high temperature he phoned the hotline no. As it was only day 2 of cycle and his neutraphils had been good was just told to monitor temperature and phone back if it didn't come down. Temperature returned to normal but no energy Friday or Saturday. Seems to be improving today but I'm not coping very well. The difference this time was the Zoladromic Acid.

User

Posted 13 Aug 2017 at 14:10

Hi there. I had chemo a couple of years back and was generally fine. They added zolondronic acid recently as I had early osteopenia due to long term steroid use and 3 days later felt awful, flu like symptoms, went away after 3 more days so whilst I don't know, I would guess that it's that which is causing flu symptoms.

Hope that helps

Take care. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

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