dannyk86

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  • in reply to: Biliary Catheter works!! Bilirubin count down from 600+ to 55 #79639
    dannyk86
    Spectator

    Hi Guys,

    Good to hear from you all.

    Still no clearer on the catheter mystery, but so far it doesn’t seem to have affected him adversely.
    Perhaps Pat, it is as you said and there is some scar tissue at the point of resection which has now magically cleared itself? we were never told definitely what was causing the blockage of the ducts as they couldn’t tell for sure if it was a tumor or just some scar tissue.

    Marion – The 55 relates to the Bilirubin count in his blood following the liver function/blood tests they took last week. Bilirubin is what gives bile its yellow colour, hence jaundice when the count is high. On the day of the operation (PTC scan and catheter insertion) his Bilirubin was over 600, now it is back down to 55. We are told that the norm is somewhere between 20-30?

    We had some initial feedback from the oncologist following the scans, from he could see there hadn’t been any dramatic change the previous scans 6 months ago, but was waiting on a full report from the radiologists.

    Pat – You mention beer or greasy food didn’t go down too well. Have you found that any particular food groups to work well or against you?

    Dad doesn’t drink alcohol anymore, and food wise he’s always been a meat and two veg kind of guy…tending to go more meat than veg to be honest. While he doesn’t necessarily eat unhealthily he has never really embraced a whole new anti-cancer diet/lifestyle like many people I read about. I always read about certain foods with are pro-live and anti cancer and try to promote these to him. But he can be a stubborn old Yorkshire man who “doesn’t believe that rubbish!”

    Still, the fact he’s here and going strong (sort of) is testimony to something! :)

    in reply to: Is increased appetite a good sign during chemo? #77535
    dannyk86
    Spectator

    Hey,

    No worries, I am equally bad at things like that. It’s great to hear your mum is stable, let’s hope it continues and she can have the resection. How is she doing in general?

    What about the satellites you spoke about before, has the chemo worked on them at all?

    Dad has been going through a particularly rough time. Symptoms have improved since he had a biliary drain put in. He is starting to eat more this week but we’re told his liver function tests haven’t improved much since the operation.

    In fact, Sheffield rung him up on Friday and told him over the phone that his liver function wasn’t improving and that there was nothing more they could do. When he asked if he should have more tests, they told him ‘nah, no point!’…when he told them that he was feeling better and starting to look better they replied “Well Mr Majeed (surgeon) says you will start to feel better for a while then you will just get worse again”

    Suffice to say we are not the least bit happy with Sheffield’s handling of the situation and have reverted back to Leeds for their opinion.

    in reply to: Is increased appetite a good sign during chemo? #77533
    dannyk86
    Spectator

    Hey Jules,

    hope you receive good news with regards to the Chemo scan results.

    Just to throw a spanner in the works, my dad is not currently on chemo but is on steroids to try help build up his strength, unfortunately this doesn’t seem to be increasing his apetite… :s perhaps this is an isolated case with dad lol.

    Best wishes to you :)

    Dan

    in reply to: My dad – CC survivor of 5+ years and counting #70804
    dannyk86
    Spectator

    Morning all,

    Apologies for the delayed response! again!

    Lainy – no blood/mucus in the stools, just pale and smelly!…nice eh.

    Patzel – Totally feel your frustration, it’s like the right arm doesn’t communicate with the left, everything is a snails pace, they put 2 and 2 together and some how come up with 5. I’ve had it with them, I think you’re better doing your own thing sometimes, rather than listen to these so called ‘experts in their field’. All they do is push you from pillar to post for months on end, fill you with doom and gloom, it’s like they read from a damn script. The is no out-of-box type thinking its all process, process, process.

    So after almost four months of going round and round in circles Sheffield Northern General Hostpital decided to undertake a PTC scan as they beleived that on the contrary to Leeds St James it was the cancer causing the problem.

    So last tuesday dad went in to hospital and had the PTC scan, which is essentially an X-ray of the bile ducts carried out by inserting a transhepatic needle into the bile ducts and injecting with x-ray dye. During the procedure they discovered that the bile ducts were swollen, this was causing them to be constricted and thus obstructing the flow of bile. They decided to insert two tubes to help the flow of bile from the liver to the bowel, one internal the other external draining in to a bag. These drains are now permanent.

    The surgeon told us that upon inserting the needle it became very apparent as to what was causing the problem. Low and behold, they found another Met. The cause all along, was a tumour that had grown across his main bile ducts right on the joint to the bowel. Not shown on the scans, no idea how long its been there but presumably it occured in the last 6 months. Now his liver, having being poisened with toxins that could not be disposed off due to the blockage, has sustained considerable damage and is functioning very poorly. So much so that chemo is no longer an option, certainly not at this point anyway. The main focus now is trying to repair the damage that occurred over the last four months. They have prescribed him with some steroids to help build back his strength and have encouraged him to eat ‘sweet’ stuff as the liver processes that more easily and to eat no meat.

    We have been told that the next three weeks will be key to repairing the damage of his liver. Once the liver is in a healthier state, then we can revaluate the cancer.

    Cant help but think…If only we went ahead with Chemo in April this whole situation could have been avoided, the new met may never have occured and even if the chemo didn’t work, atleast we would know that now and could be working on the next step. In stead we’ve taken two maybe three steps back.

    To say i’m pissed off is a fucking understatement. excuse my French.

    To finish on a positive, the drains seem to be doing the trick, his jaundice is subsiding and the diarhea has stopped. Just have to hope and pray that his liver will recover from the trauma.

    all the best to you all.

    Dan

    in reply to: My dad – CC survivor of 5+ years and counting #70799
    dannyk86
    Spectator

    Hey Lainy,

    Treatment…or lack thereof! I just find it so frustrating all this waiting around, everything seems to happen at a snails pace with the NHS. It’s partly why I don’t want to go around getting second opinions again because it just takes too long. Even to send scans through from one hospital to another takes a week at the very least. Something I would have thought should be relatively simple?? Maybe I expect too much :S

    I’ll pass on your suggestion about the UC…we have tested for many things but I haven’t heard that mentioned so its worth a shot. It is the D that seems to be giving the most grief, he has come to me in tears in the middle of the night before because of the pain from having to go so much :(

    in reply to: My dad – CC survivor of 5+ years and counting #70797
    dannyk86
    Spectator

    Hey guys,

    Thanks for the responses.

    Been a little busy here the last few weeks and not had a chance to get on the site. Also, broke my Mac charger to so was without a laptop. £45 for a power lead – daylight robbery! anyway…

    A month on since my last post and we’re still nowhere nearer to determining the cause of my dads symptoms. Dad has been signed off work by the Doctor as he is fatigued both mentally and physically. I think three months of going to the toilet 7-10 times a day is taking is wearing him down. He was prescribed Creon to help with the Diarrhea, I’m told it hasn’t made much difference… Still, he manages to squeeze in the weekly round of golf and now hires a golf buggy (which by the way sounds way more fun!). No point wasting energy on walking the course when it could be better spent on perfecting that golf swing ey!

    So, two/three weeks ago dad was referred to a liver specialist in Sheffield (Prof Gleeson) to carry out a number of tests to rule out infection (hepatitis etc). He wasn’t willing to perform a liver biopsy because they were worried it could could do more harm than good. All tests came back negative and we have been referred back to Leeds Oncology with another appointment booked for two weeks time.

    We wrote to Dr Anthony with our frustrations about being pushed from pillar to post, not getting anywhere and again having to wait a further two weeks. This was his response:

    I fully understand how frustrating this is and you are correct that we have been going round in circles for the past 3 months – as a result of an unusual clinical picture that doesn’t fit in with what the scans appear to show us. In some ways it doesn’t surprise me that Prof Gleeson hasn’t found anything ( although I still think it was the correct plan just to make sure we weren’t missing something other than the cancer causing the problem ). I will get Martin onto clinic as soon as possible and it might be that we have to empirically give chemotherapy a go ( even if we cannot actually prove beyond doubt that it is the cancer causing the problems). I will try to see you next week if possible.

    So it looks as though dad may end up finally having a few rounds of chemo to see if it alleviates his current symptoms. A tricky one because on one hand the jaundice, itchiness, loss of appetite all seem to point towards the Cancer, yet the scans don’t show any blockages in the bile ducts. Surely 3 ultrasounds, a CT and an MRI can’t all be wrong? can they?

    Feeling a little lost and in search of answers I went back to Dr Khan to see if he could offer any guidance. Without seeing the most recent scans he could not offer an awful lot of insight regarding specific symptoms or treatment, however, he did think that the presence of Diarrhea was unusual and not really associated with CC…can anyone vouch for this? had experience of this?

    Gavin – Funny you should mention SIRT, I have been reading about
    it just this morning. It sounds quite promising and will certainly raise with Dr Anthony at the next appointment. Unless I’m terribly mistaken It sounds quite similar to chemo-embolisation?

    Percy/Gavin – Regarding RFA – This was suggested by both Prof. Cunningham and Dr. Khan, however, Mr Prasad (the original resection surgeon) was reluctant to proceed down that route before trying chemotherapy as he believe RFA could harm/undo some of the work that was undertaken during his liver resection. He did say, that if we were to go down that route then he would prefer it to be done under his care at Leeds as he knows the case best (which we agree with).

    All the best everyone. Will keep you informed with our progression…as slow as it may be..

    Dan

    in reply to: My dad – CC survivor of 5+ years and counting #70791
    dannyk86
    Spectator

    Hey all,

    Thought I’d revive this thread after a little time off!

    Just to update you on the situation with my dad (Martin).

    So, at our previous consultation in April with the Leeds Oncologist, they decided NOT to proceed with Chemo and wait a little longer to see how the cancer fared over the next 3 months.

    Upon questioning why they would want to wait rather than just go ahead the response was the following.

    “There is currently only one type of chemotherapy treatment that is known to be effective for CC patients, that is the Gemcitabine and Cisplatin regimen. The chemotherapy was shown to be effective in shrinking the tumours around 60% of the time but it would never completely cure the cancer. Therefore each subsequent round of chemo was found to be less effective than the last as when the cancer regrows it does so with an added tolerance, until eventually it is no longer affective. This varies from patient to patient, in some cases they could go through 4 or 5 round over a number of years, but in some cases it wasn’t effective at all.”

    Therefore, given that my dad’s Cancer is “slow growing” and he was in good health, the decision was to hold off on treatment until there was evidence of more significant growth in the hope that the chemo would have more to target and thus be more effective.

    I have to say, I didn’t really agree with this at all, it seemed very ‘reactive’ rather than ‘proactive’. I mean if you have a leaking roof, you don’t wait until the house is flooded before cleaning it up, you fix it immediately to minimize the damage… but hey what do I know I’m just a Construction Manager.

    Anyway, around the end of July/beginning of August dad’s bowel movements started to become irregular (i.e very often), he was showing signs of Jaundice and weight loss. He went to our local GP who took some blood samples and stool samples to test for infection and his Bilirubin levels. In the meantime he was prescribed some antibiotics. Blood tests results showed no signs of infection but Bilirubin Levels were up from ‘normal’ 20-30 to 95.

    As he was scheduled for his quarterly scan at St James anyway this information was passed over to them. A week or so later Dad had his CT scan and more blood tests. All the time dad’s starting to feel worse, getting very emotional, unable to sleep at night due to constant Diarrhea, generally quite emotional and drained of energy. Another week passes before the consultation with firstly the Leeds Surgeons and Oncologists to discuss his scans and blood tests. However it is decided that a ultrasound scan would be done before the meetings.

    Monday 19th August, we go to Leeds for the Ultrasound Scan and to see the Surgeons. On this occasion we didn’t see the general surgeon Mr Prasad, but one of his new understudy’s, who was not at all familiar with his case, In fact she asked us to talk her through the case!! Perhaps it’s just me but I was actually quite shocked by this.

    Both CT Scan and Ultrasound scan show once again showed ‘no significant growth’ (they love that term) in the existing tumours, and no new mets. So from a surgical point of view they didn’t believe there was any work to be done (i.e no need for a stent or any other surgical treatment). So his case was passed on to the Oncologist to discuss further. More blood samples were taken.

    We returned on Tuesday morning to see the Oncologist. This time, we saw Dr Anthony, he was far more up to speed with the case and actually talked us through the scans which we were loaded up on his computer.
    The scans showed that that over the course of 11 months since the recurrent tumours were first spotted, the 2 lesions in the liver had each grown approximately 10mm in 11 months and were approximately 31mm and 38mm in size. However, these lesions were situated in areas of the liver far from any bile ducts and were unlikely to cause any blockages or be responsible for his recent symptoms. He expected that for these tumours to cause any significant problems they would need to be 5 times the size. The mets in the lung were negligible and not of much concern.

    The decision was made that now would probably be the right time to start chemo, but also an MRI scan would be done beforehand to see that would give a clearer picture of what’s going on in his bile ducts as all symptoms point towards a blockage. To quote him “We don’t want to be lured in to a false sense of security based on the Ultrasound and CT”.Blood tests showed a steady rise in bilirubin which was now at 112 up from 95. We were told that we would hear back regarding a scan in the next couple of days before the August bank holiday.

    The Week Passes and no word, Dr Anthony is on holiday for the whole week commencing 26th August but on the 29th a letter is received via our local GP. My dad’s Bilirubin Levels are now at 195 (up from 112). A meeting is arranged for Tuesday 3rd September with Dr Anthony.

    Meeting on 3rd is held, Dr Anthony is surprised that my dad has not had his scan yet (he thought it would take place while he was on leave) and so arranges an MRI for next Thursday 12th September, with results to be discussed on Tuesday 24th September (two months since symptoms first started). Not much further to discuss, other than my dads lower left abdominal region which was in pain/aching. Dr Anthony suggested that this could be due to his bowel being in a strange place so waste gets trapped causing discomfort. When queried about the rise in Bilirubin levels Dr Anthony seemed unconcerned and said that Bilirubin levels need to reach 600+ before they become dangerous.

    Anyway, since April my dad stopped taking the hemp oil (it made him very drowsy and tired), given that the hospital had no prescribed any medicine he started taking again. For the first time in 5-6 weeks he was able to sleep through the night without having to get up repeatedly for the toilet. We have also bought some supplements to aid liver functions as I read milk thistle and NAC can help?

    Being able to sleep has obviously raised his energy levels. He is still working full time and playing golf at weekends, although he admits he was flagging on the back nine and gets tired in the afternoons.

    I find it incredibly frustrating how long things seem to take with the NHS and can’t help but feel that all this waiting around not knowing is doing my dad no help at all both mentally and physically. I’m certain that if we had the money we would go private. I appreciate that they have other patients to see and they’re under resourced but 2 months is just a complete farce in my mind.

    Dan

    in reply to: My dad – CC survivor of 5+ years and counting #70786
    dannyk86
    Spectator

    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?…:S

    in reply to: My dad – CC survivor of 5+ years and counting #70761
    dannyk86
    Spectator

    Hi all,

    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

    Dan

    in reply to: My dad – CC survivor of 5+ years and counting #70774
    dannyk86
    Spectator

    Mick,

    This has come as quite a shock…I didn’t know people ‘up north’ could use the internet? ;) I can definitely imagine the shirt/underpants combo, dad’s dress sense has always been…experimental.

    Anyway, Thanks for the kind write up, I don’t think my writing style has ever been described as eloquent! :D . Given the amount of negativity surrounding CC and cancer in general, it’s great to hear my dad’s story offers hope and inspiration to others. Long may it continue!

    SCAN UPDATE:

    Just thought I’d provide a quick update following the scan results last Thursday.

    Although I was unable to attend the meeting with the Leeds oncologist, I am told the outcome was more positive than previous appointments. The oncologist was helpful and explained the scans in greater detail than anyone had done in the past. Much to our relief my dad was told that between January 31st (the date of his previous scan) and 9th April there had been no significant growth to any of the tumours in the liver or lungs.

    The largest of the two tumours in his liver had increased by about 1mm and is now about 30mm in size, a total growth of 4mm since September 2012 (which we are told is slow). The oncologist believes that for these tumours to cause any severe problems it would need to be approximately 5 times its current size, as they are not located in an area likely to cause blockage. Obviously we would hope to treat before growth of that extent.

    Regarding the metastases on the lung, having initially being told one tumour it now appears to be three very small borderline tumours/growths which don’t look to have grown. However, one of the lesions could potentially restrict the airflow in to his airways if growth were to increase, so it was important to keep monitoring them.

    When asked which metastases had the most cause for concern the oncologist explained that while the lesions on his lung could potentially restrict airflow, it is possible that further down the line these would be amenable to ablation, this was also the case with the smaller second tumour on his liver. However, the largest tumour on his liver would be more difficult to get to as it is located behind his diaphragm and may require surgery to remove.

    In the first instance they would treat with chemotherapy, however the oncologists view is that since the tumours have maintained their pattern of slow growth it would be best to hold off on any chemotherapy for the time being and continue to monitor on a quarterly basis. His reasoning was that aside from the fact my dad is able bodied and not suffering any symptoms, It would be difficult to assess how well the chemo was working as cancer cells are generally more responsive when growing (dividing) more rapidly.

    The question remains at the back of my mind ‘how far do we let it grow before dealing with it?’

    When questioned if he thought the hemp oil or diet change could have contributed to the reduced growth over the last few months, the oncologist explained that typically my dad’s cancer has always been slow growing, but didn’t rule out the possibility. He also spoke of similar research involving cannabinoids which is underway in Leeds, so the idea behind the hemp oil was not completely absurd

    So to recap…

    Growth has remained slow/showed signs of slowing, currently the liver tumours are unlikely to cause any obstructions. Tumours/growths on lung could potentially cause problems with airflow but If they stabilise or grow very minimally it is possible that they could be removed using ablation, chemotherapy still remains an option and will be reviewed at the next quarterly scan. The oncologist is pretty confident that given the pattern of the cancer, the growth should remain slow (fingers crossed!)

    So not out of the woods by any means and important to stick with the healthy diet (occasional dose of hemp oil), but at slightly happier/relieved ‘Martin the Lurker’ and a more positive outlook in general for the oncologist.

    All the best

    Dan

    in reply to: My dad – CC survivor of 5+ years and counting #70769
    dannyk86
    Spectator

    Lainy, Marion, Jeeyoung, Clare, Susie and Pat

    just wanted to drop by and thank you all for your kind words, reading your responses has been very touching. Having never been in contact with anyone else who has had the misfortune of being affected by CC, it is comforting to know that we are not alone in the fight.

    I wish you all the very best and will keep you posted on my father’s progress (Hopefully he will sign up soon, as I know he is a ‘lurker’ also!).

    Best Wishes

    Dan

    in reply to: My dad – CC survivor of 5+ years and counting #70763
    dannyk86
    Spectator

    Thanks for the response Lainy, it truly has been a rollercoaster ride these last few years. We had a scare in January when he started to show signs of jaundice and we thought the tumour may have caused a blockage on his bile ducts. Blood tests and scans showed that it was just an infection and was dealt with through antibiotics.

    The good thing is that at the moment my dad is showing no symptoms and as I said is leading an otherwise normal life. It’s very hard hearing the poor life expectency and prognosis from the doctors, especially when you look at him and he seems fine. It hard to believe that things could potentially change so rapidly…?

    Unlike others it seems my dad has been very fortunate to bounce back from this disease the way he has and live with it for more than five years. I just hope the cancer growth continues to be minimal and that the chemo helps also. He does get quite emotional and feel down from time to time, but we try to rally round and change his perspective from ‘dying with cancer’ to ‘living with cancer’ :)

    I will keep you posted on the results – we expect to hear back early next week.

    Thanks again,

    Dan

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