Discussion Board Forums Introductions! Introduction My brother’s fight with Cholangiocarcinoma

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  • #86809

    Hi,
    We emailed Professor Wigmore this afternoon telling him of Glasgow’s decision. Donnie told Glasgow what Professor Wigmore had said and they dismissed it saying he did not have all the facts. We do not know anything about the tumour progression as Donnie has not had a scan in 6 months despite asking for one on several occasions. This alone has caused Donnie a lot of anxiety as he is left in the dark not knowing what is happening inside him. He would prefer to know be it good or bad news. We have tried to argue that not knowing is bad for his mental health but they pay no heed. Regarding the drain they tell us it is too risky to replace. Again Donnie is left with questions bouncing about in his head. Is it not working because the tumour has grown or is it that the drain needs replaced? 9 months ago we were told his stents were not working and it was not possible to put any more in. At that point we asked if the external drain was possible. We were told by Glasgow and our GP that it was not a possibility. We asked for a second opinion and that is when Professor Wigmore and said that it was possible. Eventually, after a change in consultant it went ahead in Glasgow and this has kept Donnie alive. This is another reason why we question Glasgow’s decisions. Up until a month ago the drain seemed to be keeping Donnie’s bilirubin levels manageable but this is no longer the case. Very little liquid is coming out. Donnie no longer gets appointments with a consultant. He has contact with the Marie Curie doctor but his input is limited. We are keeping our fingers crossed that Professor Wigmore can help.

    Thanks for your support.

    Lorraine xx

    #86808
    gavin
    Moderator

    Hi Lorraine,

    Real sorry to hear of this latest news from you and the shocking attitude from Glasgow. Did you tell them what Prof Wigmore said? I would get in touch with Prof Wigmore again immediately and let him know what Glasgow said about this latest news. I know that Prof Wigmore was at a conference last weekend outside of Scotland but hopefully he will be back at Edinburgh by now.

    Tell Donnie that I was asking for him and tell him as well that loads of positive thoughts are coming his way from the east cost.

    Hugs,

    Gavin

    #86807
    marions
    Moderator

    Lorraine……has anyone given you an explanation re: tumor progression and why MRI and drain change will not change the situation? What exactly have you been told regarding dear Donnie’s clinical state?
    Hugs and love,
    Marion

    #86806

    Hi,

    Glasgow Royal Infirmary finally got back to my brother today. They said they would not consider doing a MRI or replacing the drain. They seem to think it will not make a difference. So my brother is left not knowing if the tumour is growing or if the drain is blocked and needs replaced. They have given up on my Donnie. I have emailed the Professor in Edinburgh again and we are waiting to hear what our next step should be to get a second opinion.

    Lorraine

    #86805
    iowagirl
    Member

    Lorraine,

    This may not be the case, but the reason for them not mentioning MRI scans may be that the MRI is very much more costly and time consuming to perform than a CT. That was a big concern for my doctors on my regular scans, but since my health insurance pays out on just about everything, so in the end, it wasn’t an issue for me here in the States. We have a high out of pocket/deductible policy, but after we’ve met that, there are few exclusions. I haven’t run into any yet. I was just thinking though, that the CT cost (a couple thousand dollars) compared to an MRI being maybe 3 times that may be the reason the MRI hasn’t previously been mentioned for Donnie. However, I can’t believe that a good doctor would withhold the information. It sounds like either your doctor either doesn’t have a good grasp about CC patients or he is pressured not to use the MRI for the cost. Just my guess….but something doesn’t sound right. So glad to hear that Prof Wigmore has given you some positive feedback. Maybe you can use that for some leverage. ????? Best wishes.
    Julie T.

    #86804
    lainy
    Participant

    Oh, Lorraine, I feel so much better about this as it all says pretty much what I thought above on Feb. 4th. What a great Prof. Wigmore is! I had def. thought the drain needed changing and that is what is casing the decline in Donnie’s health! I can’t wait to read the outcome!!! I hate to sound pessimistic but the place that treated/not treated Donnie the way they should, should not be taking in CC patients! Sorry about that and so happy about what the Prof. wrote. Good luck to Donnie. You bet you have hope now on the horizon!!!!

    #86803

    Hi,
    I emailed Professor Wigmore from Edinburgh who was helpful in the past. He kindly emailed back even though he was not in the country. He said Donnie could have a MRI scan as this would not damage his kidneys. This would show whether the drain is blocked which is highly likely given the amount of time it has been in. A decision could then be taken about whether it could be replaced. He said that it could be relatively straight forward to do this. An MRI has not ever been mentioned by the consultants at the Royal Infirmary in Glasgow just that a scan was not possible. In addition, they said that replacing the drain would not be an option. So tomorrow we are going to phone the clinical nurse at the Royal in Glasgow to ask for a MRI urgently. Donnie is no longer seen by any consultant there as they have said there is nothing else they can do.
    Fingers crossed. At least now we have a glimmer of hope that something else can be done. Donnie has been OK over the weekend just very tired. It has cheered him up realising that there are people out there who care. Thanks very much.
    Lorraine xx

    #86802
    gavin
    Moderator

    Hi Lorraine,

    How is Donnie doing this weekend? Please tell him that we are all here rooting for him big time. Are you going to contact the GP tom? It was Dr MacLeod was it not? Please let us know how that goes and know as well that we are all here for you and Donnie always. Thinking of you both right now.

    Hugs,

    Gavin

    #86801
    marions
    Moderator

    Lorraine…..Helen suggests to get in touch with the GP immediately. How are things today?
    Hugs
    Marion

    #86800

    Hi,
    Lorraine here. Thanks very much for all your kind replies. Your advice is very much appreciated. We are desperate with worry. Marion I would really appreciate if you could speak to Helen. I think you are all right that we have to contact our GP to access a second opinion. Thanks so much.
    Lorraine xx

    #86799
    marions
    Moderator

    Lorraine……I too don’t have much knowledge to share with you regarding the external drain, but agree with Gavin and would contact the GP. Something just doesn’t feel right here.
    Helen, AMMF, is attending our conference in Salt Lake City, but I will make sure to speak to her as soon as possible and will get back to you.
    Hugs,
    Marion

    #86798
    iowagirl
    Member

    Oh…BTW…..I had previously done Gem/Cis chemo which damaged my kidneys. My creatinine ranges between 1.1 and 1.4 on a scale where 1.0 is at the top end of normal. My GFR dropped down as low as 45 (with 60 being the bottom end of normal). It is 50 right now, but the doctors refer to it as kidney damage and probably permanent. They do not seemed to be concerned about the MRI contrast on my kidneys.

    Julie T.

    #86797
    iowagirl
    Member

    I can not do a CT scan with contrast because of a potential allergic reaction, so instead, my Mayo doctors came up with me having a CT WITHOUT contrast of my lungs and and MRI WITH contrast of my abdomen and pelvic area. I don’t know if that would work for Donnie or not, but the contrast medium used are different for the two types of scans. When I did the CT with contrast in the past, they really pushed a lot of water before and after the scan. Now that I only get the MRI contrast, they no longer push water (though it wouldn’t hurt of course).

    Julie T.

    #86796
    gavin
    Moderator

    Hi Lorraine,

    Great to hear from you and I am real sorry to hear the latest news about Donnie, not what anyone wants to hear. I’m not too sure about the drains etc so will leave comments about them to others. My thoughts right now would be to go see the gp and see if they can get Donnie referred back to Edinburgh and see if they can take a look at what is going on with everything. Especially so as you say that Donnie feels that they have rubbed their hands of him.

    What does the Marie Curie nurse say about everything, the drains etc? As to the scan being too risky to do due to renal failure etc, again I can’t answer that question for you as I do not know the answer to it either. Apologies for that. My thoughts would be as I said to get to the GP and see what they say about things, what to try and do next etc.

    Please tell Donnie that we are all rooting for him and I am sending him my best wishes.

    My best to you both,

    Gavin

    #86795
    lainy
    Participant

    Dearest Lorraine, I would run, not walk to another Doctor! Yes, the drains have to be replaced about every 6 weeks to 3 months. Sounds to me like the simplest treatment to change to a new drain would solve a lot of problems. Also it is the norm to have scans every 3 months! I am very sorry to say this, but I am raging upset for you all! It sounds to me like whomever is treating Donnie gave up some time ago. I hope you can get him to another Hospital as it appears a change of drain would give Donnie some improvement. To me their treatment, or no treatment, is barbaric! A clogged drain can cause the Jaundice which will cause the Billie to rise and a change of drain will improve things quickly. I would also keep a log of what they have NOT done as you may want to use that down the road! I can only wish you the best and someone needs to grab hold here to right the wrongs!

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