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Hi Julie,
Yes, I am in a fortunate position in that my son in law is a surgeon and is currently doing a Phd in bio electronics or something, very bright lad and is in a major centre here in the UK, he has offered for me to get hold of copies of all my labs and scans and him and a mate of his, a professor in the hepato biliary field, will have a look at them and then advise me accordingly.
I do like and trust my oncologist at St Lukes but I get the distinct impression that it’s run a bit like an abattoir (maybe the wrong analogy) in a high production mode, I am sure behind the scenes a lot of mistakes are buried.
There are quite a few trials going on here and in western europe I must start looking around quite soon as I am already aware of changes that are very concerning.
My GP this morning told me that she would get hold of the orthopaedic guy personally and have it expedited soon.
Trying to stay positive and will post developments as they happen.Cheers,
John
Hi Gavin,
Yesterday was an exceptionally bad day for me , I went to my meeting and eventually my oncologist came in and it dawned on him that something had gone amiss. My CT scan was done in Aldershot it was diagnosed and then sent to Frimley Park Hospital and not St Lukes in Guildford, anyway my labs and scans were not included in the MDT that went down Monday evening. My onco then asked us to wait while he arranged to download my scans from FPH and in the interim processed another 4 patients and then called us back in and delivered his Dx or interpretation of what he had just digested. He is going to send me a letter tomorrow basically stating bluntly what he has just told us that I will use to get a favourable release from my employer and to sort my mortgage out.
My CA19-9 has gone up to 11700 and I have a tumour in my pancreas. He says my prognosis is 3 months to a year. I have indicated to him that I am not going to do the chemo he is offering but will explore other options.
I feel I have a bargaining chip now to try and get my epidural moved up the queue on compassion, I do need it urgently and if successful will truly enhance my quality of life.
He said to digest what we have just learned and I will have a follow up next week with him and he has asked my wife and daughter to try to convince me to do the chemo.
I have a lot to mull over and do and will communicate with you again shortly.Cheers,
John
Hi Iowagirl,
Thanks for the very nice reply but disregard the earlier post, the pain is back on top form and tomorrow I am going to have another go at having my appointment brought forward.
The level of pain that I am experiencing is far in excess to anything I suffered from the whipple or a shoulder rebuild and as I said to the surgeon on a 1 to 10 scale mine is about 13.
Yesterday was not a good day for me, the 23rd September 2015. I awoke to the return of the sciatica pain. I had an appointment to attend so went out to my car and it would not unlock, found out it has not got a door or boot keyhole, the battery has gone flat from little use recently and it is securely locked. How do I open it up to be able to change the battery ?
Got to my appointment and after long delays was told that I have a met to my pancreas and that it’s not resectionable and that my prognosis is 3 months to a year. I have a further meeting with him next week. My CA19-9 from the blood taken a week back was 11700 up from the 6000 previously.
Feeling pretty numb but planning on being around for a few more years to come hopefully.Cheers,
JohnThanks Gavin,
I have a date for a foramil epidural that hopefully will sort out the pain problem November 3 so only a month to wait.
In preparation for the scan that was scheduled for the 28th I had blood taken on the 4th of Sept and the labs contacted the GP about alarming CA19-9 levels. Found at 6000 , I saw the oncologist on the 14th and he had me scanned on the 18th with contrast and also blood drawn again to see what the 19-9 is doing. He and the MDT have had a meeting Monday and I have a follow up with him planned for Wednesday this week.
Strange thing happened after the scan, getting there was torture for me the same as leaving really painful as I had not had any pain meds since the night before, resumed medication and on Saturday morning got up and hardly any in your face pain at all, Sunday stopped tramadol and now on just gabapentin and naproxen for control. I think that somehow the iodine contrast seems to have freed up the trapped nerve.
Trying to be positive till Wednesday and I will let you know what it means.Cheers,
John
Thanks Lainy,
My first scan is due next month but I had the lumber region scanned recently and that was MRI and showed no signs of metastasis. I am going to see an orthopedic surgeon next week on the 20th and hopefully he will be able to do something to rid me of this pain.
After my surgery the surgeon saw me daily for 8 days and discharged me, I had a follow up meeting 2 weeks later and then had a meeting with oncologists, I had a window period of 3 weeks in witch I could change my mind, but after my experience with my Mom’s, Dad’s and Brother’s chemo journeys I decided not to change my mind. I would say that physically and mentally I had fully recovered at 6 months post surgery. A few weeks later I put my back out and have been very uncomfortable since but my gut is still working a treat and for that I am grateful.
