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Thread: Partner with SCC, no treatment

  1. #11
    Moderator Senior User IndyLou's Avatar
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    Olwen, I have to say that I am dismayed to read about the hurdles you've already been through for your partner. What he has was nearly curable, and in an effort to save money, his symptoms seem to have been kicked down the road until the present state.

    Did the doctors indicate what Fred's palliative care will consist of, and when it could begin? That cetuximab trial would've been good, if he met the inclusion criteria.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  2. #12
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    Quote Originally Posted by IndyLou View Post
    Olwen, I have to say that I am dismayed to read about the hurdles you've already been through for your partner. What he has was nearly curable, and in an effort to save money, his symptoms seem to have been kicked down the road until the present state.

    Did the doctors indicate what Fred's palliative care will consist of, and when it could begin? That cetuximab trial would've been good, if he met the inclusion criteria.
    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 meeting.

  3. #13
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    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, but that is possible as a day trio. It's a little over 100km.

  4. #14
    Moderator Senior User IndyLou's Avatar
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    Olwen, do you have any sort of estimate of when you might be able to visit the oncologist? Will you have to travel to Nelson for the treatments as well, or is there some place closer to you? Traveling 100km for a weekly chemotherapy is probably tolerable, but if radiation is given, it may be daily. Where did you travel previously, to have scans and tests?

    I'm glad you're making some progress towards some treatment. How's Fred doing with all of this? Is he feeling OK?

  5. #15
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    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 Chistchurch and an ultrasound tech from Nelson. Fred's tongue surgery was in Nelson.

  6. #16
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    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.

  7. #17
    Moderator Senior User IndyLou's Avatar
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    Hello, olwen...wanted you to know that I'm following your posts, and thinking about Fred. Did they say what they're planning to do at your next oncologist's appointment? I would hope that they'll be discussing a specific treatment plan, and getting Fred ready for that. I still find it maddening that everything has taken so long, and you seem to walk away from each appointment with less than what you had before walking in.

    Treating head & neck cancers require a multi-disciplined approach, depending on how one is treated. If daily radiation will be applied to the neck, dental issues are a concern; inflammation in the mouth and throat can lead to a reduced ability to eat, so nutrition must be addressed; and with any cancer treatment, a pain management plan should be discussed. In the US, a decent cancer center has most of these resources available in one place, so patients can usually get everything they need in a minimum number of time and trips.

    Your partner will greatly appreciate any assistance you can provide during the upcoming weeks. Just being there should be a great relief for him.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  8. #18
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    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 oncology. Radiation is done by a visiting expert, but chemo is local.

    I'm not sure if this continues to be treated as head and neck or as something else. He has small lumps at the base of his neck, and some in his chest. I suggested to the GP that the ENT specialist was no longer the appropriate point of contact and she was inclined to agree, but the ENT department had mailed out an appointment before that. I will be keeping that, even if all that is achieved is a chance to review what he knows, and vent about him not informing us earlier about the extent of this.

    Fred's throat seems clear, and he has no teeth to worry about, although one was dislodged in his first surgery. Pain is not an issue at the moment at all, but oncology will address that for sure.

    Blenheim where Wairau hospital is is a rural service centre with vast sparsely populated areas around. Some high country -- wilderness and/or stock, lower land mostly grapes for wine, and the Sounds with vast distances of drowned river valleys. They grow our native greenlip mussels and farm salmon in the sounds.

    Nelson, is a rather larger centre, but still not what you would call a decent city. The hospital is larger. Specialists are largely based in Nelson, but most visit Blenheim every few weeks for clinics. Both centres are covered by the Nelson Marlborough District Health Board.

    Sometimes treatment that can't be done locally is sent to Wellington, but more often Christchurch. Wellington has several hospitals and 2 DHBs. Christchurch has 1 DHB. Wellington and Christchurch both have teaching areas associated with Otago University which is based in Dunedin, and senior consultants will have DHB appointments, a private practice, and may be teaching as well.

    It's common for people to be sent to different areas depending on their condition. A friend with melanoma was sent to Hutt hospital (one of the Wellington area hospitals). That's where you would want to be if you had bad burns because they are good at that.

    So getting back to the point I will be asking if a Wellington group, or even an Auckland one might provide better options.

    And for some amusement part of the road I was driving on after the awful trip to Christchurch. I was going the other direction https://www.youtube.com/watch?v=wizcghldrgo

  9. #19
    Moderator Senior User IndyLou's Avatar
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    I enjoyed the video, olwen! Did you use a dash-mounted camera to take that footage? It's quite good, and if nothing else, the views of NZ are quite scenic. If only you could travel to and from doctors and treatments that fast!

    My understanding of treatment, even of metastatic cancers, is they treat it as they would the primary cancer. So if the diagnosis of the primary tumor is H&N SCC, any distant metastases would be treated in the same manner. In this case, likely with a systemic treatment such as a chemotherapy or targeted therapy, and possibly with some localized radiation to knock down larger tumors. It's possible that they could also remove tumors with surgery, though that has to likely be the most expensive forms of treatment.
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  10. #20
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    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 on that road.

    I'm hoping to investigate various options for treatment. I feel there must be something. As far as I know Fred does not have any large tumours.

 

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