April 27, 2013 at 3:10 pm #70789
The main concern for my answer below is if the patient is satisfing with his current health condition and treatment plans and the future of his disease is not of his immediate priority at this moment , then what I say below may not apply.
As a fellow patient myself, experts opinion do carry a lot of weight in making my decisions . But I do understand that sometimes like our Lainy said I have to listen to my guts too.
I do believe in God giving me the wisdom to know the truth and the best ability to discern the ambiguity if I continue to research and study this disease.
As you know, experts opinions could be different too, but the body is mine,my disease, my health and my life. I do believe if the expert themselves have the same disease, they will look far more and deeper into situations to help them or their love ones. It is simply just a common human behavior .
In short, to wait for the tumor to grow slowly and see whether where it leads is not sit well with me. But than again , some times situations will be determined by this if you will accept this quotation.
” To change the things you can ,and accept the things you cannot change”
God bless.April 27, 2013 at 12:35 am #70788pattimeltParticipant
It was so good to have your personal thoughts! I must have the very same thought patterns as you do! I also have good days & bad days. On the good days I do everything I can do & even on the bad days try as much as I can. My husband & family & dear friends are all so supportive & optimistic! I am thankful for them & as one of my dear friends keeps saying, “just Keep Swimmin”!! Also I know God is the Great Physician & He knows the # of my days better than any of the doctors!April 26, 2013 at 11:34 pm #70787
Wonderful to finally have everyone together; the lurker and the enticers.
Both, Dr. Khan and Dr. Cunningham, are experts in the field of Cholangiocarcinoma. I would consider an additional consult.
MarionApril 26, 2013 at 10:42 pm #70786dannyk86Participant
Welcome to the fold “Lurker”
Perhaps that title should have made it into your screen name
Lainy, to answer your question re: Dr Khan and Prof Cunningham.
Presently (to my knowledge) they have not been informed about the decision to delay the Chemotherapy. I’m not sure how this sort of procedure works in the US, or how familiar you are with the process in the UK (for the record i’m not that familiar either, I just write from my limited experience). Both consultants were initially written to for second/third opinions following the outcome from Sheffield Hospital. Having seen the most recent scans and review my dad’s case they put forward their recommendations to Mr Prasad at Leeds.
Taking on board their suggestions (i.e. proceeding with chemotherapy, which Mr Prasad agreed also) he took his case forward to the Multidisciplinary Team (MDT) meeting at Leeds. The outcome was to proceed with chemo.
As mentioned by my dad, the recommendation from the Leeds Oncologist (Dr. A. Anthoney) following the pre-chemo scan results was to delay the chemo and continue to monitor quarterly, given that in his mind the tumours were slow growing and not presenty causing any problems (In other words, living a (relatively) normal life).
At this point the Dr. Anthony said that he would report his recommendations back to Mr. Prasad at the next MDT meeting. With regards to Dr. Khan and Prof. Cunningham I think that it down to us to contact them again.
Of course I am more than willing to contact both again, however, I feel it may also be prudent to hear Mr Prasad’s perspective first?…:SApril 26, 2013 at 8:06 pm #70785lainyParticipant
Dear Martin (alias Lurker) so good to meet you, almost in person. Now I know where Dan gets his wonderful gift of writing. But I am almost happier to hear about your ‘slow growth’. Did Dr. Khan and Prof. Cunningham say why they are putting off Chemo? I like to say we try to remain realistically optimistic. It does sound like you are doing pretty good. We all just have to take one day at a time in life, that is the best we can do. You never know how strong you are until “strong” is the only choice you have! Now that you jumped in to our water don’t be a stranger!April 26, 2013 at 6:31 pm #70784martink58Participant
I thought that it was time for me to make an appearance, as I have, in fact been a “lurker” for a week or so now.
I am Dan’s father, Martin, a sufferer of CC for 5 years and still counting (as you’ve already heard).
At this point, I’d like to thank Dan for posting my story (it must have taken an age to compile) and everyone for their kind words of encouragement.
I have been referred to as a “Super Hero”. I am no more a Super Hero than any of you out there that are suffering or caring for someone with this dreadful disease.
Had it not been for my surgeon Mr K.R Prasad and without my wife & sons (who have suffered just as much, if not more than me) I would not be here today.
During the first year of diagnosis and after my liver surgery, my weight dropped from 15 stone to 9 stone and I needed constant encouragement to eat and drink in order to keep up my strength to fight the illness. My family were always there by my side.
I always remember Mr Prasad saying that FOOD IS GOD’S MEDICINE and that is so true; you need nourishment in order to keep your strength up.
I have good days and bad and there’s not a week goes by when I don’t shed a tear or two.
What I would give to be able to see my two sons marry and raise a family, become a granddad and enjoy retirement with my wife Gail.
Unfortunately I don’t look that far ahead, I take each day as it comes and try to get on with life I have a tendency to push my illness to the back of my mind.
I play a round of golf most weekends, I go out with my family and friends (whom have also been very supportive) and I also work full time, what else can I do. I don’t know how much longer I have left?
So you see, really I’m no different to anyone else out there that has CC.
Last Thursday I went to se my Oncologist, to get the results from my CT scan, this week I should have been commencing chemotherapy treatment.
For the first time in ages, I was given some good news!!…..the tumour had only grown 1mm in the last 3 months which is slower than the norm for CC, I understand!!
A decision was made to delay the chemotherapy and see how the tumours perform over the next 4 months.
I must say, I was somewhat relieved at the thought of not having to start chemotherapy. Let’s hope it continues to slow down and maybe stop growing altogether or would that be too much to expect?
So there you have it, things can turn around when it seems like there’s no hope.
Funnily enough I’ve never been that positive and I’ve always expected the worst, so it means the good news always comes as a bonus!!
Once again thanks for your support
Martin (the Lurker… or is it Super Hero?)April 24, 2013 at 12:45 pm #70783gavinModerator
With regards to Cyberknife in the UK, yes it is only available at a few select facilities in London as I understand it. And yes you are right in that trying to get access to that treatment under the NHS would involve getting your PCT to fund it and in reality, that would be extremely tough to do. Not trying to put a dampner on that if you are planning on investigating it further, but from what I have heard getting funding for Cyberknife on the NHS will very tough to say the least. I know it is available privately but the cost would be very expensive.
GavinApril 23, 2013 at 10:34 pm #70782
I can only speak on behalf of my case and please remember I am only a patient and by no means have any medical knowledge like a doctor.
My last CT scan shown I am still clean.(ie: nothing can be seen in the scan to suggest me I have CCA); but I will be on Xyloda for 2 more years.
On the other hand, as Dan said “It now seems that nothing has changed, i.e. we’re back to square one just ‘monitoring growth’ again. Maybe I am being impatient/naive but the cancer is still there and it is still growing, so why wait for it to grow some more?”
God bless.April 23, 2013 at 9:48 pm #70761dannyk86Participant
Thanks to everyone for their responses.
Lainy, I have come across the Cyber Knife in my research, a relatively new treatment from what I remember and I believe there are only a small number of hospitals in the UK with the equipment. The information I have found online from the NHS states “CyberKnife® treatment is available to both NHS and private patients. Currently treatment on the NHS is provided on a case-by-case basis only, with an application having to be made to each patient’s local primary care trust (PCT) for what’s called individual funding”. So I am not sure getting this treatment in the UK is a straight forward procedure, still it is certainly worth pursuing and I will investigate further.
The thing I find a little frustrating (and maybe it just me) is that the thought process behind seeking out second and third opinions from Dr. Khan and Prof. Cunningham was so that we could push for chemotherapy following the rejection from Sheffield Oncology. It now seems that nothing has changed, i.e. we’re back to square one just ‘monitoring growth’ again. Maybe I am being impatient/naive but the cancer is still there and it is still growing, so why wait for it to grow some more?
At what point does chemotherapy become necessary? the idea put forward by Dr Prasad and Dr Khan was to try and ‘nip it in the bud’ and attack the cells in circulation around the body before it gets worse, not wait until things worsen. Do we wait for this ‘slow growing’ tumour to slowly get big?
Like I said, there are positives to be taken, but by no means out of the woods!
All the best
DanApril 23, 2013 at 7:26 pm #70781gavinModerator
Thanks for the update on your dad Danny.April 23, 2013 at 6:50 pm #70780
Percy…would you mind explaining this to us.
MarionApril 23, 2013 at 6:46 pm #70779
All I can say is : there are absolute differences in the treatment plans as well as the approach of advising CCA patients between UK and the States.
God bless.April 23, 2013 at 6:03 pm #70778lainyParticipant
Hello Dan, and thanks for the update. Not bad, not bad at all but a 2nd opinion would give you verification which would give you validation that everything is headed in the right direction. Just wondering if the ONC had mentioned Cyber Knife for the tumors closest to the lungs? It is non evasive and the tumor must be below 7CM. My husband had CK when a tumor had grown after his Whipple. Love the words not changed much!April 23, 2013 at 4:48 pm #70777
Danny….As Jeeyoung has mentioned, your Dad is a superhero. The absolute good news is the definition of “slow growth” tumor however; I would consider obtaining a second opinion on the current, clinical approach taken.
MarionApril 23, 2013 at 4:38 pm #70776
Michael…can’t imagine for Martin (the lurker) not wanting to add his comments to your posting on this site. We welcome you, Martin, and we are known to keep secrets…ha, ha… tucked in underwear included.
Thanks, Michael, for joining in and showing your support for a man elusive to us, but eagerly awaited to appear.
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