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  • in reply to: bone met surgery? Experiences welcome! #84328
    patzel
    Member

    … and my husband is back on 40mg MST (slow release morphine) twice a day with a tendency upwards again plus oral (quick release) morphine several times in between… he does not manage to be active with this dose and gets sleepy. I have read Jeff’s posts before and always wondered how he could manage to still be active, obviously the morphine does work very differently in people.

    in reply to: bone met surgery? Experiences welcome! #84327
    patzel
    Member

    @ Marion
    the thing is: all these treatment have been suggested by me to our oncologist… the only procedure she tried to “find out about(!)” was the cementoplasty (similar to vertebroplasty and kyphoplasty) but was told then this could not be done because the remainder of bone is so damaged that it could not contain the bone cement.
    The other options were ignored and for some we were told that there was “not sufficient evidence for them being beneficial”.

    This is the wording of my letter to the oncologist dating some months back:

    Depending on the result of the CT Scan (stable, growth…) we would like to be able to make an informed decision about the further treatment. As discussed chemotherapy “might” be an option but it might not necessarily be the only one or the best one.
    The best option in the patient’s interest should be the one which gives a maximum of pain relief (and therefore leads to a considerable improvement in quality of life) with the least impact or side effects.
    So non-invasive treatment options should be a preference.

    It might well be that the lymph nodes require a different treatment approach or at a later stage but so far they don’t yet cause any noticeable problems.

    For pain relief of the bone metastases we would like you to look into the following options and advise accordingly whether they could benefit my husband. Some of these options are generally used for metastases on other sites and/or different types of cancer but they have been used in other countries (US and Europe as well as in Asia) in similar cases (cholangiocarcinoma). I am confident that access to medical publications should not be a problem for you.

    Cyberknife (stereotactic radiotherapy)
    today’s CT scan images will be needed immediately for the experts to decide whether this treatment would be appropriate

    Magnetic Resonance-guided Focused Ultrasound
    (also known as High Intensity Focused Ultrasound)

    Cryoablation

    Image guided Radiofrequency ablation (RFA)

    Cementoplasty (injection of bone cement)

    Image-guided transcatheter arterial embolisation TAE

    Transarterial Chemoembolisation (TACE)

    Selective Internal Radiotherapy (SIRT)
    Internal Radiotherapy (isotopes)

    Proton Therapy

    Bisphosphonates

    Nerve block (as one of the last resorts)

    Chemotherapy (which would probably be Gem/Cisplatin)

    I may point out that the delay in diagnosing the metastatic disease falls under the full responsibility of the team in Aberdeen who did have the chance to investigate the issue properly when the rib met was still small (and therefore there were chances for a curative treatment). Requests from our GP were ignored and months after the CT scan of June 2013 it was finally noticed that a “thickening” on the rib had obviously been overlooked and/or misinterpretated and with a considerable delay further scans and X-rays were performed.

    So we will not accept to be presented with just one option (the chemotherapy) without having had the chance to be advised in detail (expected outcome, risks and side effects) of all the possibilities.

    Well, and the result was: the nerve block was offered… and now the surgery which makes me worry…
    Parallel we are seeking privately a second opinion (at our own expenses) about the possibilities of tomotherapy… hope we get more information about this withing this week… surgery is scheduled for the 26th/27th so time is not really much.

    What more can one do than present a choice of options on a silver tablet to the “specialist” (the oncologist)? Can they not read? Less invasive methods are certainly not nerve blocks and definitely not the kind of surgery they are planning now.

    Venting…

    in reply to: UK patients? #83421
    patzel
    Member

    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?

    in reply to: International Cholangiocarcinoma Patient Registry #83350
    patzel
    Member

    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…

    in reply to: rib metastases #83211
    patzel
    Member

    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…

    in reply to: our good news are not exactly medical… #81799
    patzel
    Member

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

    in reply to: update on tom #77559
    patzel
    Member

    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.

    in reply to: update on tom #77557
    patzel
    Member

    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?

    in reply to: Question about taking pain medications (oxycodone) #77462
    patzel
    Member

    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.

    in reply to: infection… hallucinations #76761
    patzel
    Member

    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.

    in reply to: infection… hallucinations #76754
    patzel
    Member

    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…

    in reply to: infection… hallucinations #76752
    patzel
    Member

    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…

    in reply to: infection… hallucinations #76748
    patzel
    Member

    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.

    in reply to: infection… hallucinations #76745
    patzel
    Member

    @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.

    in reply to: infection… hallucinations #76743
    patzel
    Member
    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.

Viewing 15 posts - 1 through 15 (of 33 total)