Intro uk
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Hi John,
Real sorry to hear this latest news from you I so hope that your gp can indeed get you moved up the queue for the epidural and get this done asap. And I so agee with Marion’s suggestion about getting your son to reach out to the professors that she mentions in the above post. Please know that we are all here for you John and will help if we can, and keep us updated on everything if you can.
Thinking of you right now.
Gavin
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
John….wow…things really do turn on a coin sometimes, don’t they? I just logged on and found your post. It sounds to me like you’ve had the ultimate “bad day, ” with the sciatica, car and scan news. I don’t know how medicine works in the UK, but I would push very hard to get that epidural for the back pain, to try to at least eliminate that from your concerns. The decision about the chemo has to be yours ultimately. Do you have options to get another opinion as to what treatments you might be able to receive?
Julie T.
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,
JohnHello John, What a remarkable story you have and a remarkable story of survival. In the grand scheme of things, we look at back pain and think, “Oh gosh, what the big deal when I’ve had this major cancer thing going on, ” but reality is that back pain HURTS….and hurts a lot. Through all of my diagnosis, surgery, chemo and beyond, I have had a problem with my back and one thigh and hip area. I could not lie in bed at night without a lot of pillows and even then I woke up every hour to turn and the pain would hit again. My pain diminished in the hip and thigh area when I too had an MRI…..but, more likely mine got better because I had gotten a steroid before hand at night and morning in case of an allergic reaction to the contrast of a CT they had planned. The CT was cancelled in favor of an MRI, but the leg and hip pain reduced significantly. I had tried a lot of things, including months of physical therapy….but nothing made it better. I can’t imagine how contrast could release a trapped nerve, but there doesn’t seem to be any other explanation….and then there’s the old expression, “Don’t look a gift horse in the mouth.”
))) BTW, I recently started to use a product called Aspercreme (over the counter) which I rub into the areas of my back that have hurt. After everything we’ve tried, this seemed to do the best at alleviating the pain. One side has a muscle band that appears to get irritated and swell (I believe also with a trapped nerve) and when using the cream twice a day, it reduces the swelling. I now only use it once a day and even skip now and then, and the pain level has been pretty stable at about 2 on a scale of 1-10. Aspercream is a product with aspirin in the cream base which you rub into the skin over an affected area. It isn’t making it all go away, but it has made me more functional. I agree with the others….don’t concentrate too much on the C19-9 test as many things can make it go up. And…don’t dwell on what choices you made. You made them and now move on. Don’t look back, questioning your choices. Meanwhile, be happy that the back issue seems to have mostly resolved…..because having two or more major things to worry about at once just really sucks the energy out of you. And, right now, you need all your energy to live the life you’ve been given back…..to enjoy!!! Congratulations on the successful surgery and hopefully, permanent , easy fix for your back. We’ll be watching for your post about the MRI and blood test results. Good luck! Julie T.Hi John,
Good to hear from you again and thanks loads for your update. If the contrast has freed up your trapped nerve then that is good, trapped nerves can be very sore can’t they and lets hope that there is no more pain from that as you have enough on your plate right now to deal with,
Am keeping my fingers crossed for you for some good news from your scans and the MDT meeting on Monday and please let us all know how that goes for you and what they say etc. Please try not to focus on the CA 19-9 levels too much right now.
Loads of positive thoughts are coming your way John and please know that we are all here for you and rooting for you as well.
My best wishes to you,
Gavin
Thanks 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
Hi John,
Welcome to the site. Real glad that you have joined in with us here but sorry that you had to find us. And real glad as well that you were able to have the surgery and that it went well for you. Thanks for sharing everything with us. Hope as well that your back surgery goes just as smoothly and that you are fully back on your feet as it were very very soon. Back pain is no laughing matter!
Please try and not focus too much on the past and the should have done this or thats as I would argue that that will not do you much good right now. You have so much to look forward to I would say!
I too am from the UK, Dundee in Scotland and my dad was diagnosed and treated up here back in 08. I’m guessing that you will have heard of AMMF in the UK, if not here is a link to their site –
Loads of UK specific info can be found there. Hope that you will keep on coming back here and post as much as you want to and I am looking forward to hearing more from you.
My best wishes to you,
Gavin
John, I am a little surprised that they did not mention periodic scans as that is the only way to check. I had another rare cancer and had Scans every 6 months but am in my 6th year FREE and now I go once a year.
Know how I knew Teddy was feeling better? He would go to the golf course and Putt balls!
Say, I also had back surgery 3 times on the same Disc the L4/5. What a difference now.
Good luck on everything and keep us posted.P.S. I am really a healthy person just got rid of lots of things in my body I didn’t need. HA, HA
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.Dear John, welcome from across the water to our remarkable family and the best place to be for CC support. First of all CONGRATULATIONS on your successful Whipple. Surgery is our favorite word. Except for the back problem it sounds like you are doing quite well.
My husband had a Whipple and the ONCS and Surgeons made a team decision of no Chemo. He did start out with Scans every 3 months and after a couple of years went to twice a year. It does no one any good to have regrets or wonder if they did the right thing or did enough. Try not to dwell on it, what ever it turns out to be, enjoy life as life is for the living! I am wondering though if they are following up with Scans. Please keep in touch with us on how you are doing. It is quite a lengthy recovery. Wishing you the very best.Hi all,
Thanks for including me. I am a 61 year old male, married with 3 kids all adult. Last year 2014 in Sept I developed yellow jaundice and was sent to hospital where they identified and rectified this in a day and 2 days later told my wife and I they suspected that I had pancreatic primary on the head of the pancreas. I was referred to the Royal Surrey County Hospital, Saint Lukes Cancer Centre.
I was introduced to the ‘Team’ and my surgeon Mr Tim Worthington who told me that I was eligible for surgery and when he could do it he would.
November 18th 2015 I underwent six hour surgery this was his second of the day and he operated until 7 pm at night .
ICU overnight and in morning was got up and walked about and that afternoon put on HCU Surgical ward for eight days and then discharged home. 4 months later returned to work and now at 8 months post whipple off sick again with backache, lumbago and sciatica.
I thank god and Mr Worthington every day for his superb work he did on me. The dignosis for this is a trapped nerve at L5
The diagnosis for what they cut out in the PPPD was T3 N1 G3 1/17 lymph nodes moderately to poorly differentiated Cholangiocarcinoma.
At the time there was no evidence apparently of benefit from adjevunct chemotherapy so I did not do any. I have since read SWOG papers and think that I would have done it now in hindsight.
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