My dad – CC survivor of 5+ years and counting
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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
Hello Danny, I wish your Father days of better health so that he may continue his golf outings! I was diagnosed May, 2013 with Stage IV inoperable cholangiocarcinoma with metastasis to nearby lymph nodes. I have refused chemo because I am very afraid of the possible side effects. I am scheduled next week for the Gem/Cisp treatment. I wish I had your Father’s courage to fight. He has been through so much, what a great warrior! Your Dad is fortunate to have a son like you.
Danny, just a thought, in earlier posts you mentioned that Martin juices his fruit and such, that can give a healthy digestive tract a real challenge, the outcome is predictable. Maybe try more solid food and bananas, works for me, Pat
Dan
keep pushing them…
if you don’t push the NHS everything is just happening very slowly. And yes, it does seem that one has to make sure that there is communication happening between the consultants!
Just fighting a similar battle to get a referral to a specialist down in England (we live in Scotland where the NHS does not give you a “right” for a scond opinion but decide individually).
Just for comparism: my BF diagnosed with CC October 2012, resection December 2012, first follow-up scan end of June 2013 (should have been earlier I think). Complaints about pain and swelling on a rib ignored by consultants, was told it might be a trapped nerve, prescription of painkillers en masse, three months later (finally) a bone scan and an x-ray confirmed bone met, still no suggestions about treatment but more painkillers prescribed, now PET scan, consultant on holiday for another 2 weeks…
we want the referral NOW and don’t want to wait until the consultant comes back… in my opinion far more sensible to get the results looked up by the specialist and the consultant at the same time to come up with treatment suggestions at the same time… don’t want any more delays.
Officially the NHS has a database where patients results (scans etc.) are held and most GPs can just log into the system. So can there be any justification of one involved medical professional not wanting another having access to the same data in order to speed up the process?
Stay strong and keep pushing them!Dan, I hate to talk potty talk but ask Dad if he has any blood or mucus in the stools. That is almost a sure sign. I thought of it after I posted, sorry. Also see to it that until he is seen again that he goes off fried foods, greasy, spicy and caffeine. I also can’t tolerate fresh vegetables and beef. I know it limits what you eat but there are still lots of things. Oh, dairy is not good either but sometimes I cheat a little with a few spoonfuls of ice cream or a piece of cheese.. Soups, chicken, fish, turkey, potatoes, Jello, peel fruit all good. You know ruffage things are not good. I will be waiting to hear about the stools. Yippee! In a way I hope we are on to something.
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
Welcome back Dan although to be honest I decided to not say anything about the treatment your Dad has been given so will just say we are all here for you! And such pompous attitudes!
I do have an odd suggestion. I have been fighting Ulcerative Colitis for over 2 years now, really having a hard time getting it under control. I had the diarrhea all day some nights, was not hungry, couldn’t sleep, fatigued. When you next meet with someone please talk about the diarrhea. Why have they not given him anything for the D? You might ask someone if perhaps a colonoscopy could show UC also with the CC. Just a stab in the dark but you never know. They may not see the forest for the trees. I am not a Medical pro but you really hit it with me about the big D. Take care and hope you get some real answers soon!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
Hi Dan,
Just to add to what Percy said to you re RFA, as I understand it NICE has been consulting on this and have not yet made a decision either way but one is due very very soon.
http://www.nice.org.uk/guidance/index.jsp?action=article&o=63960
I understand from Helen at AMMF that SIRT has been approved and will soon be available at 10 centres throughout England. Funding has been approved but they have not yet designated where the centres will be. When I hear more I will post more on SIRT. Also will post more on RFA when I hear about that too.
http://www.nice.org.uk/nicemedia/live/13966/64616/64616.pdf
My best wishes to you and your dad,
Gavin
Hi,
Has RFA or microwave ablation been in discussion for treating the tumors in the liver.( These are procedures that may burn off the tumor if the sizes is around or<30mm.unless the locations of the tumor do not allow such .)
I do not know the health and medical system in UK? may be Gavin or others can give some pointers of this.
God bless.I love the NHS – it does great things but, I agree there are times when it is not so slick and as a carer or patient you have to keep your foot down and drive forward (I say that as a nurse that worked in the NHS). I don’t like the unpredictability of this disease and have first hand experience of the turn it can take. My sisters rapid decline shocked her surgeon and GP and caught them off guard. Go with your gut Dan – I wouldn’t be happy being no further forward after 2 months.
Danny….Although, your dear Dad has survived this cancer in excess of 5 years, I don’t understand the approach taken. Is it possible to consult with Dr. Kahn directly?
Please keep us posted.
Hugs,
MarionHi Dan, good to see you bad to read your update. It does sound like they have not done anything! I am not a Doctor at all but surely they cannot turn a blind eye to the fact that he might need a stent. Jaundice is a 1st sign of bile not flowing which in turn can cause higher Billie counts. I am not sure that CC is always slow growing as we have seen otherwise at times. Why would anyone want to wait months to see what any kind of Cancer is going to do. Perhaps they wanted to see how deep the water would get in the house from the rain?
Bless your Dad for being able to push through and go about his daily life! He has a wonderful attitude and a wonderful son. Be strong and please do keep us posted.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
Hi Martin!
Glad to hear that there was little growth between scans for you and that you are able to enjoy life (golf every weekend!) and enjoy time with family and friends. That is what life is made of after all right? Sounds like you really enjoy life.
Here’s to many more good scans and living life!
-Randi-
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