dannyk86

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

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

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

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! . 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

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