Trials

Hi was told my prostate cancer had spread to my pelvic bone and become incurable September 2018. Is there anyone been offered a cancer trial ? I have not, makes me bitter. Be nice to be given an option. Just seems to me the NHS is not doing there best for me, it took 33 days for the result of my last scan, is this the norm. (shouts of Corvid) Been the norm for me why before corvid. Trials, its the old adage if you don't ask you don't get. Mentioned trials to my consultant not very forthcoming did mention she was organizing another CT and BONE scan and changing a prescription. I wonder when, as its coming. Nearly 2 weeks since our phone chat and still haven't got my new prescription I need. My GP has not seen the e-mail as yet Sorry about the negativity just wanted a bit of a rant.

  • Hi Jim, sorry to hear about your situation.

    Unfortunately because of Covid NHS are not functioning at full steam which is probably why u r having to wait longer for procedures.

    As far as clinical trials go u should try looking into it yourself rather than waiting for them to offer. Go to Cancer Research UK and click on trials to see what is available.

    Best wishes

    Steve

  • Absolutely right Steve.  Best place to look is oon the Cancer Research UK website.  I would chase up the new medication although things are not working as normal I think it is worth reminding your consultant that you are still waiting for both the new medication and scans.  Infact it is usually a good idea to phone the radiology department to see if they have your name for an appointment and if they do then tell them that you can go at short notice if they have a cancellation just say you could be there within x amount of time - the time it would take you to travel from your home to the hospital.  I have done this a couple of times and have just had a hearing test today and will be seeing othalmology tomorrow at a couple fo days notice - they phoned yesterday, as a lot of people seem to be deciding that it is not worth taking the risk of mixing too much in the current covid situation and are cancelling their appointments if they are not urgent.

    Hope everything goes well for you.

  • I have been looking and found a possibility just looking for a route as for COVID my experience I live Lincoln made CORVID disappear during first lockdown paid private consultant £200 I get full PIP payment sadly might have to look at going private I wonder if CORVID lingers in the private sector 

    Best wishes,
                        Jim
  • Thanks for replies sometimes I feel wit coming on at times it seems easier to phone the tax man

    Best wishes,
                        Jim
  • Yes.  A good question Jim.  My wife needs to call HMRC but keeps putting it off as it usually takes half a day!

  • Hi

    I had a few scans not long ago as my PSA was rising, I knew I had it in my bones, that was from four years ago, but that was under control, but the scans revealed one in my left pelvis and right ribs. My oncologist brought me in, informed me about the new areas but was happy with my condition.

    He mentioned a trial I could go on which was xtandi and radium 223 for people who had it in their bones, but if the pain level at the moment was to high you could not be in the trial. I declined anyway and just took the xtandi hormone tablets instead of Aberaterone which Because of my heart would Not be advisable.

    What I’am saying is seek other guidance from another hospital, I live in Manchester and the people at Salford Royal are first class. 
    There are trials out there and you shouldn’t be paying for anything, incurable means what it says and they should be giving you first class information, ask the nurses on here, they should provide information of another hospital near you or as close as possible.

    keep safe

    joe

  • Thanks for your reply just been a bit down of late. Rang  my consultant sec and I got an immediate response.(HAPPY DAYS) Down for a bone scan, don't know when. Forms arrived today, my consultant recommended I start on ENZALUTAMIDE also called XTANDI. I see same as you, forms signed and posted. Awaiting phone call to explain whatever. Concerned what CORVID will do, at the moment Lincoln is in a low grade. I do try and find life's trials amusing, particularly when been told by friends I am vulnerable to CORVID. As for trials I'm in a bit of a mess don't know which way to turn. I become incurable with a PSA reading of just 4.5and its just risen to 7,4 found a new appearance of a SCLEROTIC lesion in T5 vertebra just as well I forced a scan by going private, no idea what SCLEROTIC means, have to look it up, 

    Best wishes,
                        Jim
  • Hi Jim, looked this up and,

    sclerotic lesion is an unusual hardening or thickening of your bone. They can affect any bone and be either benign (harmless) or malignant (cancerous). In general, they're slow-growing. Both benign and malignant sclerotic lesions are usually classified by their number and size: solitary: one lesion

    Don't let your good days be spoilt by the worry of a bad day, that may or may not come along.

  • Thanks for the info I have googled it, not sure if google is good or not. Sometimes I feel there's to much information. Then again information is power. I am fortunate and have many friends. Just in the last year cant tolerate alcohol, find it amusing watching my mates get pi--ed .Bad time for me is now, evening time when my wife goes of to bed early to read and I am alone with my thoughts. I have all the tv entertainment/ film depends on my mood, do like listening to  60s/70s music, music of my youth. I do go on anyway thanks for sort of listening.  

    Best wishes,
                        Jim