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(5 replies, posted in General Discussion)

Hi,
I was not thinking of "another" forum... perhaps an area within this forum? Even to use this thread to communicate about our specific needs might be helpful.

What do you think?

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(5 replies, posted in General Discussion)

would any of the UK patients (and caregivers) be interested to form a sub-group or any other way of regular communication?
We will probably all have the same problems such as limited access to treatments which are standard in US and Europe, NICE guidelines which question treatments which have been approved in other countries, lack of experience in medical staff with this kind of cancer, NHS funding problems (for interventional radiology, especially in Scotland), limited access to trials...

Talking from own experience: could you believe that it was me who had to investigate suitable treatment options to get our oncologist to look into them? Some treatments the oncologist had never even heard of...  (not funny ones, just standard procedures in other countries)
Could you believe that it had to be me (and I am not a doctor!) who had to look into side effects and risks caused by medication which my husband was on for a long time and make suggestions to the doctors to change to medications with less severe side effects. Some stuff he's been given over a period of many months (some even years, although should not be used over a period of 10 days) are metabolised via the liver and caused problems which now can be controlled with a much less harmful drug...

I think it could all help us if we compare our situations (what stage, how treated, which complications, how were they treated, alternative treatments to control side effects of for example pain relief drugs etc.).
One major problem is (especially in rural Scotland) that you might have an oncologist "in charge" who is supposed to oversee all treatments you get but he might be far away and you cannot consult him when you experience any problems. So if you have major side effects to a treatment it's the GP you see who is hopelessly overchallenged by making the right decisions due to a lack of oncology background... a vicious and sometimes life-threatening situation

just completed for my husband and I hope many others will also do so!

What I did miss were questions about local recurrence, lymph node involvement (which isn't always present when diagnosed but sometimes appears later) and recurrence in form of distant metastases (also could be present at time of diagnosis or appear later).
Because for all of us (and especially medical personnel and scientists) it might be very interesting to see whether or how recurrence happened after different treatments which the patients might have had.
So if for example adjuvant chemotherapy after surgery shows to decrease the risk of the  development of distant metastases that would certainly give room for careful conclusions... so many questions each of us will have because of own very own personal experience... like I always wonder whether a different approach before surgery (or adjuvant therapy) might have prevented the cancer cell spreading to the rib along the drain etc.
If details like this would be included in the registry we'd even get more useful information out of it. Think it would help the scientists as well as us...

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(5 replies, posted in General Discussion)

Hi Val,
sorry to hear your dad also has to fight bone mets. They seem to cause more impact on the life than the primary cancer (the cholangiocarcinoma) ever did.
So far I had not heard about tomotherapy (and I thought I had found out about all options) but am trying to get more information about it. Our problem might be the size of the rib met. It is rather large, too large for cyberknife. Do you have any idea about what sizes of bone mets can be treated with the helical tomography?

We are also looking into the ablation techniques such as RFA etc. and other options such as cementoplasty. It might just be that a filling with bone cement is not feasible because it's got to be contained inside the remaining bone. But two ribs have been partially been destroyed, eaten away by the cancer.

He's had the maximum dose of conventional radiotherapy to the bone met. The initial response was very good, it shrunk and the pain went. But then it started to grow again and the pain came back stronger than before. He's been on Oxicodone before but had too many side effects. So that's why he is on Morphine at the moment, which seems to have less side effects in his case but makes him extremely tired. There are so many things he would like to do but often he's even too tired for a 500m walk.

It is so frustrating to see him in a state like this and then in UK with the NHS things move very slowly (the cancer is growing faster than they make any decisions). The oncologist is a nice person but very young and has imo not a lot of experience. Some treatments on my list (gave her a list with different options last time which she should look into and advise accordingly) she admitted that she'd never even heard about it, like stereotactical radiotherapy or HiFU... so we had to organise getting the medical files and CT scan images to consult with the cyberknife team in a private hospital ourselves. Standard treatments like Bisphosphonates weren't considered...
She'd happily just increase the Morphine and painkillers regularly which I think is a disgrace. I don't think we are yet at the point where this is the only solution. It's like sedating the patient instead of trying to treat. There won't be curative treatments but only palliative ones but at least more options should be explored.

The more I think of it, the more it upsets me... sorry for venting here... but like today: he insisted on cutting the grass (he won't let me do it) which is not really a demanding task, the grass being only 3cm long and the petrol lawnmower not being heavy but afterwards that was him knackered and in agony again having to top up with additional liquid Morpine...

5

(5 replies, posted in General Discussion)

anyone having same problem? My husband has this along where the drain was (after surgery) and it has now grown to a size of 10 by approximately 4 cm. Was diagnosed late (if we had not insisted on further investigations it might even have been later still), no treatment offered. Finally we could arrange conventional radiotherapy which brought pain relief, but only for a couple of months.
We contacted two cyberknife centres. One has just told me today they can't do it due to the size. Need to tell my husband the bad news now which makes me feel very sad.

We were offered chemotherapy but were also told that the effects of chemo on a bone met would be weak if at all. They are looking into options of cementoplasty now, but we have not yet a response.

Did anybody have the same problem? What treatment was offered? Was any of it successful in treating the pain? My husband is now on 60mg Morphine twice a day plus the normal painkillers (paracetamol and ibuprofen) which makes him extremely tired. But at the moment he's only got the choice between being either in agony or sleeping all day.

thank you all for your congratulations!
Feels like a new start to life... and we won't let the cc win!

but after all the bad effects which this horrible disease had on our relationship (including a break-up) it also made us strong.
We got married on April 12th!
Still fighting the battle against two nasty lymphnodes and a rib met (for which radiotherapy gave us a few months pain relief) but our spirits are up!

Finally we got the NHS going and there are now scans every 3 months so we'll make sure if there are any changes there will be treatment right away.

Dear members, thank you to everyone who has help me in the past to find out about this horrible disease whether it was sharing your own experiences or giving practical advice as well as the help I got from Gavin and Helen in getting us in touch with a brilliant consultant.
Sadly my "advocacy" is over now. My boyfriend has ended our relationship after we came back from his radiotherapy (for which we have been fighting so hard).
I am still in the aftermath of this, don't know any reasons why. After all we've been through recently... I thought we were close.
Since he still doesn't know what options one has in the fight against this cancer (because he left all the medical decisions more or less to me) I am rather worried that in future he won't get the care he might be needing. But there is nothing I can do now, feels like grieving although he's doing allright at the moment.
Anyway, I wanted to thank you all for your support and there is one good thing to all this misery: Via this forum I met another patient who is now a dear friend. She'll be undergoing chemo tomorrow and my thoughts are with her.

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(3 replies, posted in General Discussion)

he had a R0 resection (T2,N1 if I remember correctly) a year ago.
He was not offered chemo (not done routinely in UK after a resection).

The therapy he's getting now is radiotherapy for a bone met on the ribs which was caused by "cell seeding" along the drainage. The doctors in Aberdeen were not able to diagnose this bone met in time and when it was finally confirmed they recommended pain killers instead of treatment.
We then seeked advice from a specialist centre down in England where he is being treated now.

The NHS in Scotland refused to pay for his radiotherapy in England but thanks to his brilliant and excellent consultant the costs will be covered otherwise which is just overwhelming and takes a big worry off us.

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(3 replies, posted in General Discussion)

Hello,
I know what you are going through at the moment... we are in a similar situation. I don't know the situation in Holland. We live in Scotland and my boyfriend is having his treatment in England in a specialist centre. Today we received the news that the NHS in Scotland will not fund the treatment in England. Luckily we will get the funding from somewhere else.

Perhaps in your case it would be possible to get in touch with a cancer charity in Holland to get Tom's chemo funded (or partially funded)?
What I cannot understand: if the doctor's advice is that adjuvant chemotherapy is desirable then it should be paid for by the insurance?

I am not a friend of medication at all but there are times when it's needed. My boyfriend has to take the Oxycodone too to control the pain a bone met causes. For a start he only took the 5mg Oxynorm (which are the quick release ones) every 4 - 6 hours and we did in fact have some problems about him being "very keen" on them at the beginning and I had to control the dose he was taking and could not allow him any self service on them. If I had not controlled it he would have taken them after 2 hours... telling me he was in agony whilst dancing and singing in the kitchen.
We even had to admit him to hospital to get a proper pain management without him acting strange sorted out (additionally he developed an infection which complicated things).
But this seems to happen only in very rare cases and the doctor was telling us that in his case it might have been due to the combination of Oxycodone, anti-depressants and sleeping tablets. He felt really funny and also had problems with shallow breathing and wheezing. This combination seemed to be a dangerous one.
Since he is off the anti-depressants and sleeping tablets there are no problems associated with the Oxycodone anymore.
At the moment he is on the Oxycontin (slow release ones) 10mg twice a day and only has to "top-up" some days in between with one of the quick release Oxycodone 5mg. He is coping well and the only side effect is constipation. He is taking linseed in his cereal in the morning and most days this seems to do the job so only sometimes Senokot are needed.

So as long as your mum does not take anti-depressants or sleeping tablets she should be fine with the Oxycodone 5mg.
To cope with constant pain can be very exhausting and one does need pain relief. If she doesn't have a history of drug or alcohol abuse it is extremely unlikely that the will become addicted to it in any way.

I would not cut them in half! The slow release ones (Oxycontin) must not be cut at all (because they would release the ingredients dangerously quick) and the quick release ones are (at least here in the UK) filled capsules which you couldn't really half properly.

If she's allright with the 5mg Oxycodone and wants to lower the dose (if the pain is not too bad) she could perhaps try and increase the time gap to 8 hours. But doctors tend to work out the right dose by titration (hope this is the correct English word for it) which means they start with a certain dose (usually the 4 - 6 hour intervall) which can then be adjusted (higher or lower) depending on the pain relief effect.

thanks to everybody the weather was (sort of) cooperating.
We were on the morning ferry (the afternoon one was cancelled due to adverse weather conditions) and had some rollercoaster flights but managed to get to Manchester without major delays.

The good news: there is a very good chance to kill the beast (the bone met on the rib) with the radiotherapy which is due to start next Monday!
Apart from this there is just one suspicious node which will be monitored in future with quarterly CT scans. It showed up on the PET scan (not very bright though) but might have been due to an infection, so according to the Professor   this is not too much of a worry just now.

The bad news: all that travelling has taken it's toll... so the pain which was under good control flared up after coming home so we had to increase the medication for the moment. Especially the journey home was a long one... got up at 4 a.m. and arrived home at 6 p.m. so even for a healthy person that's some journey.

It is as if this "thing" knew that we are going to fight it next week and it's showing it's teeth for the last time.

Good news today: the Prof is his consultant now!! So we are off to see him this week and radiotherapy will start a week after.
So perhaps the only wish I have for christmas (him to be painfree or at least the closest we can get to this) might come true...

Now we only hope that our ferries will run (last week on 3 occasions there was no ferry due to adverse weather) so that we can catch the plane down south. Will leave a day earlier just to make sure...

but no day without problems...

this might be a very Scottish question: can it be that one has to fight for radiotherapy because doctors seem to think that as long as the painkillers are able to give pain relief radiotherapy is not necessary?
Does anybody consider the side effects and toxicity of long term use of painkillers? It will have a reason that usually one is NOT supposed to take them for longer periods, not even paracetamol or non-steroids. Does all that not count in cancer patients? I know that Scotland has a higher demand for radiotherapy than can at the moment be met due to the lack of linacs.
But this is a problem the NHS has to solve without the patients being the sufferers.
Even palliative radiotherapy (which will not "cure" the cancer) will have an effect on the tumor itself to stop or slow down growth. I don't see it "only" as a method for pain relief.

I just have to vent here and now today... I am so fed up with the NHS at the moment, things have been misdiagnosed, there have been delays, informations have been withheld and it seems in case of a recurrence or metastatic disease one is alone and the efforts of treating the disease are less.
Sorry to say but would the efforts be more if one was still in working age? British surgeons have been complaining about age discrimination in treatment for older cancer patients... I am beginning to believe they have a point there...

an update:
He was released from hospital last Wednesday and is doing fine at home. MacMillan had got a pain management sorted out which worked fine. Two days ago he decided to stop taking the opiods and is just on non-steroids and paracetamol at the moment and still doing fine. I was a bit sceptical about this at the beginning but it turned out to be ok.
So it might have been that the cellulitis contributed so much to the pain. Now since that infection is gone he is a lot better.

Now we are waiting for news about when radiotherapy is going to happen.

@Gavin: Yes, the professor is ionvolved in the case and it seems the hospital consultants lost a little bit of their self-confidence since that happened so they haven't come up with suggestions so far and are obviously waiting for the prof's advice first.
Our problem here in Scotland seems to be that there are guidelines about first cancer treatment waiting times (where the targets set by government still are not reached) but there are none regarding second treatment or recurrence etc., so nothing happens as quick as you would expect it to.

@Kris
I think the two of us are in a very similar position...

He's in the MacMillan ward at the moment (which is the cancer ward) and the nurses are doing a brilliant job. They seem to have worked out a good pain management (still with some opiods but in a dose where he's not dopy and confused anymore and no more hallucinations). It was so good to see him yesterday, painfree and cheerful and looking far more positive in the future than in the last horrible week where he was in a haze and trapped in a vicious circle of either being in agony or doped and confused.
Infection is responding to antibiotics and he is getting the best attention I can ask for being the only patient at the moment in this ward and the 2 nurses caring exclusively for him (and spoiling him with homebaked sweeties).
Due to the winter timetable of our ferries I can't go in today (just the one ferry tonight which takes the kids back to school) but will be on the morning ferry tomorrow.
There would be possibilities to stay in a B & B or with a cancer charity nearby like I have done the first night but I also have 8 horses and a cow  to look after, some small animals and his cat... to hire someone to look after them all is too expensive and therefore reserved for the times when he will be in the bigger hospital on the mainland for the radiotherapy where I can't travel daily.

I managed to get myself "recharged" with a good night's sleep (got up after 10 this morning) and setting the clocks back an hour to winter time has also given me an "extra" hour so I've done some more trivial things today like washing and cleaning which had not been done for a while.

kvolland wrote:

P
Also have they checked his liver function tests or an ammonia level both of which could lead to hallucination and behavior changes.

I have asked them to do that and according to them the results were normal so it must have been the opiods which caused the hallucinations.

@lainy
I would have preferred them to investigate more detailed. But - as I said - this is the NHS and sometimes it seems there are "budget guidelines" which is still difficult for me to cope with since in Germany they investigate health issues not only by "look and feel" but also using lab facilities even in minor situations.

Another problem I have is that he's not telling the medical staff exactly how he feels. When they ask he says he's fine (he'd love to go home) and after they are gone he tells me that he still feels bad. Also he's still confused and dopy although the dose of opiods has been lowered. So the speech is still sometimes slurred. Doctors and nurses might get the impression of a confused elderly gentlemen so it is a hard job to convince them that he's usually absolutely clear and this is not his normal self at the moment.

But now I need to get a few hours sleep, will have to be on the early morning ferry to go over to the hospital again which is a 2.5 hours boat trip one way (same back again in the evening) so I think I should better have a rest.

he's been airlifted with the helicopter to the local hospital on the main island yesterday. Luckily I could come with him so he didn't have to travel alone. GP was still not sure whether it was necessary but agreed when we insisted that he should be admitted.
Hospital said it was the right thing to do and put him on the drip immediately.

@clare
it is around the area where the drain was, but it could not have been a "fresh" infection because that was more than 10 months ago.

Hospital staff think it is cellulitis, did not rule out other possibilites yet but will only perform a biopsy if they are not happy with the response to the antibiotics. In other coutries they do a routine biopsy to find out which particular bacterium caused the infection just to make sure they got the right antibiotics but under the NHS this is not done as a routine.
So far there seems to be a positive response to it but considered he's been on oral penicillin for 1.5 days and now on iv penicillin for another 1.5 days I would have expected a bit more of a response.

So at the moment they are trying to sort out his pain management and hope with the infection going back that the opioid dose can be lowered (because he seem to get a hang of it).

Finally also Aberdeen must have come up with a treatment plan or at least they are discussing it according to the information of the local hospital staff. They are thinking of either bisphosphonates or radiotherapy.

So I need to find out now what will be the best option and what sort of radiotherapy might be possible. And I hope whatever it will be that it has not too many side effects, I don't think he could cope with too many more problems at the moment.

I agree with you all, also does the nurse who came round today.
Unfortunately GP doesn`t think he should be admitted as long as he`s looked after at home. He is convinced the antibiotics should be sufficient to keep the infection at bay and has lowered the dose of the opiods. Well, the latter I agree with to hopefully minimize the hallucinations. But I am not so sure about the infection...
It`s not easy to just go to the hospital if you live on a remote island. The only way would be to airlift him with a helicopter. And this can only be organised by the GP.
In the meantime (during this night) I can only keep an eye on him and if there is any worsening to call the GP again in order to get the helicopter (gale force winds tonight so this might be some task)...

has anybody experienced a similar situation:
right under the swelling of a painfull rib met an (internal) infection must have occurred, swelling under skin, hot and the area is red. It is treated by antibiotics.
But cause still unknown.
Since it is on the right hand side: how would an infection of the liver show up?
Don`t really know where to start investigating, got us all (including doctor) by surprise.

In the back of my mind is the thought about sepsis risk, is that a real threat?

Hallucinations: can be due to strong opiods but could limited kidney function (dark urine and low frequency) or the build-up of toxins (medication) in the liver contribute to it or worsen it?

I can`t leave him without supervision at the moment because he`s so confused that he might fall or something if left alone. Extremely difficult at night times where periods of agitation and drowsiness come and go.
Doctor was thinking to admit him to hospital this afternoon (due to the risk that I might not be able to cope with a 100kg man acting weird) but not yet made a decision.

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!

it works with me (but I have sent you the pdf as an attachment to an email, perhaps that works better?)

www.shpbn.scot.nhs.uk/images/stories/SH … e_2010.pdf

Hi Percy,
not necessarily a misunderstanding. I know what you mean and I know that the Chinese approach is different to the one herbalists/phytotherapists chose.
It's far more complex.
They do have something in common which is the holistic understanding (hope this is the right word, might sometimes have problems since I am German and English is not my first language).

Anyway because the Chinese herbal medicine is far too complex and one might need some experienced person to guide you I have chosen the other approach many decades ago and decided to study phytotherapy with a focus on traditional herbs (was surprised that many plants considered to be weeds are so useful).

Licence or law is no guarantee that you get the proper stuff but it is somewhat reassuring that there are some regulations and tests (of course there will always be black sheep) what I meant was this http://www.edqm.eu/en/european-pharmaco … nd-50.html

thank you, Percy, interesting links!

Problem is - as you mentioned in one of your postings - very often that one needs to make sure that the quality of the drugs is good and that they are not contaminated.

Many herbs (not only Chinese ones are powerful) can be grown in the garden or the vegetable plot (having my problems to grow them to maintain our supply on an island in the North of Scotland though).
Unfortunately CC is such an aggressive cancer that time dictates to buy the supplies.
I usually try to get the things I can't grow via Germany where the pharmacists are controlled by laws and have to make sure the herbs supplied do meet certain standards. For some a doctor's prescription is needed.
But this way I can avoid the risk of getting herbs of doubtful origin.