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    I had the simulation done today and I have an...

    I had the simulation done today and I have an official start date of Oct. 2nd. This is for the radiation. I am getting concurrent chemo, but don’t have the schedule for this yet. Hopefully Friday...
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    About belief and faith. I think it has been...

    About belief and faith. I think it has been pretty much proven that one’s attitude doesn’t make chemo or radiation more or less effective. See:...
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    The question of faith and personal beliefs is a...

    The question of faith and personal beliefs is a complicated one which will be for a future post.

    IndyLou,

    Actually, there are choices about the kinds of treatment and variations in treatment....
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    It is clear that bring optimistic makes it easier...

    It is clear that bring optimistic makes it easier on others in one’s social circle and that in and of itself is important, because who wants to be alone?

    Also, bring really stressed out to the...
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    Hi jorola, Thanks for reading the whole...

    Hi jorola,

    Thanks for reading the whole thread. I really appreciated it! I re-read it myself once or twice found it slow going at times!

    Yes, I’ve already noticed your husband’s excellent...
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    I just got a call from Moffitt. The head and neck...

    I just got a call from Moffitt. The head and neck surgeon I saw (when I declined the exploratory surgery/panendoscopy) was on the phone (herself) telling me that the urology oncologists thought the...
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    I can’t take Cisplatin because I have serious...

    I can’t take Cisplatin because I have serious hearing issues. Well, I could take it, but the results probably wouldn’t be pretty.
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    The head and neck medical oncologist I spoke with...

    The head and neck medical oncologist I spoke with said that he would give me Carbotaxol — Carboplatin & Taxol (Paclitaxel). He said it is what they use for NSCLC. (Do they use this combo for head &...
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    Thanks IndyLou, I do have some good news. They...

    Thanks IndyLou,

    I do have some good news. They are going to proceed with the simulation (for the radiation therapy) even before I have my appointment with the thoracic oncologist. So it looks like...
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    I saw my head and neck medical oncologist at...

    I saw my head and neck medical oncologist at Moffitt yesterday. He reiterated that I have an unusual case and that there were no protocols or standard of care in place. Also, no research on best...
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    Hi Lisa, Sure you can move the thread. ...

    Hi Lisa,

    Sure you can move the thread.

    Actually one of the remaining questions I have to resolve is getting the right chemo. I also have questions about immunotherapy (Imflinzi).

    The main...
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    Hi again IndyLou, I think we are just going to...

    Hi again IndyLou,

    I think we are just going to choose between our local place and Moffitt at this point. It’s already been 2 1/2 months since I first felt the lump and it is going to take them at...
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    Today I had a consultation with a medical...

    Today I had a consultation with a medical oncologist at a local hospital. He participated in the tumor board at which my local ENT presented my case. He was incredibly gung-ho about my case and he...
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    Yes, there were FNAing one of my two paratracheal...

    Yes, there were FNAing one of my two paratracheal lymph nodes. So, yes, one of the ones in my thorax.

    Good news: I met with the surgeon today and she agreed that the exploratory surgery would be...
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    Thanks for the info. I had the bronchoscopy...

    Thanks for the info.

    I had the bronchoscopy with FNA biopsy today. I found it more difficult than the endoscopy. I am pretty sure I had a little intraoperative awareness. I remember something...
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    I like that: “Where’s the manager?!?” That’s...

    I like that: “Where’s the manager?!?” That’s pretty much what we were thinking. LOL

    At this point I am thinking of seeking a second opinion from another major cancer center if only to give me some...
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    I think sometimes seeking a second opinion is a...

    I think sometimes seeking a second opinion is a way of being in denial about the reality of one’s cancer. I only say this because when I first got the pathology report back and read “squamous cell...
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    Yes, my H&N radiation on oncologist called after...

    Yes, my H&N radiation on oncologist called after the tumor board meeting. I think it was at the meeting they decided I was not a case for the pulmonologist and who ever else takes care of lung cancer...
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    I did finally hear back from the Moffitt...

    I did finally hear back from the Moffitt oncologist.

    Apparently the pulmonologist oncologists took a look at my CT scan of the chest and where my local radiologist found “three irregular nodules”...
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    Well, they did the upper GI endoscopy and found...

    Well, they did the upper GI endoscopy and found nothing. 100% normal. So it’s not esophageal cancer. Maybe this means it’s lung cancer? Hard to know.

    I was suppose to hear back from the Moffitt...
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    About the primary — from what I have learned thus...

    About the primary — from what I have learned thus far, it does not really seem to matter if you have an unknown primary as long as you know if you are dealing with some kind of head and neck cancer....
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    Hi IndyLou, Nothing has been scheduled yet. I...

    Hi IndyLou,

    Nothing has been scheduled yet. I think they are waiting till the Wednesday tumor board to proceed.

    I spoke to my new local oncologist today and she seemed totally perplexed by the...
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    1. Biopsy the hard to reach but highly active...

    1. Biopsy the hard to reach but highly active lymph node, by getting at it internally (through my bronchi, I think). Then they will compare the genetics of the tissue samples taken from the two...
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    IndyLou, The meeting went much better than I...

    IndyLou,

    The meeting went much better than I expected, at least when it came to the relationship between myself and the head and neck medical and radiation oncologists. They gave me a thorough...
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    I got the CT scan report back. Long story short...

    I got the CT scan report back. Long story short it seems highly likely that I have 3 metastases to the lung. Either that or, in spite of never having smoked or had a serious chest infection, I just...
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