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Type: Posts; User: olwen

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    I though he would have longer and I think the...

    I though he would have longer and I think the oncologist did too. It was 4 months exactly from the time we were told he was incurable.
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    Freddy slipped away this evening. He had little...

    Freddy slipped away this evening. He had little pain. The thing that caused most distress was his COPD presumably being aggravated by his lung mets.
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    My prediction of Fred getting no treatment for...

    My prediction of Fred getting no treatment for his cancer has proved accurate. He is in hospital with a suspected chest infection, and probable liver metastasis. His electrolytes are out of...
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    Fred saw a GP today, I'd not realised his...

    Fred saw a GP today, I'd not realised his scripts were running out, so saw one who is not our usual one. He says Fred has the optimal inhalers but gave him liquid morphine which can help with...
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    No treatment for now. Nodes in his neck smaller...

    No treatment for now. Nodes in his neck smaller apparently (so why is the lump larger). Nodes in his chest a bit bigger, largest now 22mm. We can't afford cetuximab, the oncologist prefers...
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    The chemo recommended was cisplatin and...

    The chemo recommended was cisplatin and cetuximab. Cetuximab isn't funded grrr.... It was recommended for funding with high priority in Feb 2014. There are patient specific routes. But we'll see...
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    I had a call the other day saying Fred's scans...

    I had a call the other day saying Fred's scans had been reviewed and that I should expect some sort of communication, yesterday we saw the ENT surgeon for a followup.. He had had a call from the...
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    They have to request scans. I'm picking a couple...

    They have to request scans. I'm picking a couple of weeks.
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    I had sent an email to an Auckland clinic and...

    I had sent an email to an Auckland clinic and thought it was being ignored, but had a phone call yesterday. Mr Patel will review Fred's case. http://www.ahns.co.nz/surgeons/rajan-patel/ He is...
  10. Metastatic SCC no conventional treatment offered

    My partner had a small lesion successfully removed from his tongue in December. In June/July he's had metastatic nodes confirmed in his neck and lungs. These are all small and have no symptoms. At...
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    There's an ENT appointment for September 1, and...

    There's an ENT appointment for September 1, and an oncology one for October 18. Probably a scan before the oncology one. I can contact the oncology nurse if there are changes in the interim for an...
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    The decision at the moment is to do nothing and...

    The decision at the moment is to do nothing and check after a few months. It WILL progress, we just have no idea how fast.
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    Actually I figured the HPV thing yesterday. It's...

    Actually I figured the HPV thing yesterday. It's been there all the time, and unfortunately is negative.
    What I have is:

    1. Complete excision 20x20 ulcerated left posterior tongue base lesion...
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    Well we are finally to see an oncologist on...

    Well we are finally to see an oncologist on Monday. I asked about the length of it and it's 45 minutes, so long enough to get some answers I hope.
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    Keytruda is funded from the start of September...

    Keytruda is funded from the start of September for melanoma. I can't find the full criteria at the moment, but this is the press release.
    ...
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    Going alongside all this is life planning. Fred...

    Going alongside all this is life planning. Fred needs a will (as do I), an EPA (at least for care and protection), and some thought on how he wants things treated at various stages. The house is in...
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    We had an appointment with Mike Roberts, the ENT...

    We had an appointment with Mike Roberts, the ENT surgeon today and found out very little. He is doing a referral to oncology (finally). Fred will start to have problems at some stage, could be as...
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    Okay it's 1pm on Monday in New Zealand. Phoned...

    Okay it's 1pm on Monday in New Zealand.

    Phoned Nelson oncology this morning to find out about the appointment. They knew nothing, but there was a meeting this morning, and I figured Fred might be...
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    3d Printing to reconstruct jaw

    I'm sure this is happening elsewhere, but this is interesting reading.

    http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11688611
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    Not my video I'm afraid. Just thought it showed...

    Not my video I'm afraid. Just thought it showed what our roads are like not all coastal like that, but not very different in other places. PS sometimes when the weather is rough there are seals...
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    These oncologists have not yet seen Fred at all,...

    These oncologists have not yet seen Fred at all, and as far as I know have not previously had the chance to review his case. The ENT surgeon was liaising with Christchurch rather than local...
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    Still waiting for call re urgent oncology...

    Still waiting for call re urgent oncology appointment. Did get another call from someone filling in fot the ChCh co-ordinator to see if I knew we had an ENT appointment.:roll:
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    Oncology appointment should be within a week. ...

    Oncology appointment should be within a week. Chemo is local.

    We also have an ENT appointment for next Wednesday. locally.

    Scans are local and the FNA was local with a doctor from...
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    We saw the GP today, and she called the local...

    We saw the GP today, and she called the local Oncology department. The nurse called me this afternoon and is sorting out the earliest possible appointment. We will probably have to visit Nelson,...
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    I think it is still probably nearly curable. All...

    I think it is still probably nearly curable. All this is so recent I still don't know what is happening; I have a GPs appointment for tomorrow. She (the GP) may need a support person at that...
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