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Well Mayo knows how to deflate my progress - 2 Distinct Cancers present.


Kamoto

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I finally had my 2nd opinion consult with Mayo Clinic today.  The agree, Stage IV lung cancer, and agree with the Tagrisso drug plan of action. 

But they wanted to know why I had no plan in place for the Esophogeal Cancer which they with almost certainty is NOT an EGFR mutation with lungs being the source.

Unfortunately there are ZERO drugs which I can take for both Lung and Esophagus Cancer.  So Esophagus treatment will not be surgical, as the tumor is at the junction of the stomach.

And since I have a stage IV lung cancer, no surgeon will agree to remove the Esophagus tumor.  So Chemo is most likely to be recommended for the Esophagus tumor. 

I don't think I want that.  I'm doing so well on Tagrisso, with zero side effects.  Two weeks in now, and my rib pain is gone where before Tagrisso the pain was so bad it sent me to the ER.  I'm not getting rid of stage 4 cancer with Tagrisso.  So why bother to also try and attack the 2nd cancer I have.  I'm inclined to live well, on Tagrisso, and when the Esophageal cancer goes stage 4, let it take me.  Mayo is formulating their plan, up to me if I want to sign on to it.  I don't think I have the will to experience Chemo.  My mother did, and it just ruined her last six months of life. 

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Kamoto, 

Oh damn and double damn. You’ve hit some weird cancer lottery, haven’t you? So sorry to hear this. 

You’ve been clear-eyed and action-oriented since you began recounting your cancer experiences here. Your response to the most recent events is no different. You seem to have established the most important parameter for you: avoiding treatment, i.e., chemo, that would affect your life in the way it did your mother’s. I think it’s just as important to know what we don’t want in our treatment experiences as it is to know what we do, so I commend you. 

Give Mayo a chance. They may come up with something that surprises you. 

Meanwhile, thank goodness for Tagrisso. I am so glad you are not in pain.

Karen
 

 

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Thanks Karen.  The Mayo oncologist is a rock star.  She has 200+ medical journal citations.  Her specialty is lung, so she is gathering some more data to present me to their weekly meetings, and get Esophagus expert opinions.  Mayo doesn't do anything half *ss.  I like that in them. 

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Chemo today is not like it was in the past. I had chemo and radiation before starting Tag. For me, radiation was hardest because it treated lymph nodes near my esophagus and caused esophagitis. If you do elect for chemo, get a palliative care specialist on your team beforehand. I'm sure Mayo has that resource. 

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Kamoto,

You're getting some good coaching from Judy and Karen.  For my part I just want to wish you the best outcomes for all the treatments you get and to reinforce that adding "palliative care" to your treatment team is a wise move in order to help maintain and good quality of life as you go through what could be otherwise more difficult treatment.  I look forward to your next update.

Lou

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I go to Mayo on Sat.  I’ll have an endoscopic ultrasound.  Anyone at Mayo on Monday want to be my pickup?  The ultrasound will let the esophagus cancer doc know how to deal with it. I meet him on wed and fly back to MT on Thursday.  Not looking forward to entering an airport.  Total chaos these days.  

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Hey Kamoto, I am not on this site very often but do occasionally surf it and saw your post.  I am a stage IV lung cancer since April 2019 with brain, adrenal, abdominal LN mets and do my doctoring at Mayo and also live fairly close by.  You mentioned you want a pickup on Monday the 25th.  Maybe I can be of some help??  Let me know.  Would be glad to do what I can!!  Take care now. 

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I really like Judy's suggestion of a palliative care specialist. Not only can they help with side effects of treatment but they can help coordinate treatment in complex cases (like yours!). And their focus is on quality of life, which sound like its a big thing for you. (as it is to a greater or lesser extent to most of us. )

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Thanks Susanrae.  Mayo makes this easy.  Each building has a valet.  No need to check in with the valet when you arrive.  Tell your nurse that the valet is your pickup.  They will note it.  You can take a wheelchair down to the valet, or walk down on your own.  Valet will call the hotel if they have a shuttle, in my case the doubletree.  But thanks for offering, I was stressing about this. 

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Doubletree was a great hotel.  Good Italian restaurant on the 1st floor.  Lobster Bique and Soy Glazed blackened cod for dinner.  Their bread is amazing.

 

Was about a five minute walk over to Gorda building.  Checkin, pre-op were all the same as any hospital.  But when they wheel you into the room, holy heck batman, what are all these machines.  Stryker Corp devices, Seimens devices, monitors everywhere, the operating room was impressive.  Mayo is a bit slow to take you into OR though. 

So the Dr staged my esophagus cancer at stage II.  Met with Esophageal cancer doctor today via video, and he said no surgery.  Not when another Stage IV cancer which I have in the lung is present.  I would likely not survive this demanding surgery.  I also talked to them about a difference between Japan (gastroectomy) and US (esophagectomy) and she told me Japan is unique with esophagus cancer in that it is environmental there.  She mentioned the diet, and also very hot beverages.  Come to think of it, I like my Caffe Mocha at 180 degrees.  Wonder if this is my esophageal cancer trigger.  So they recommend Radiation/Chemo.  Carboplatin and Paclitaxcel.  They are discussing the fact that I'm on Tagrisso.  Dr. said if I stop Tagrisso while doing the chemo, I could get rebound cancer.  So they want to make sure the three drugs in conjunction won't kill me.  I don't think I'm a candidate for Proton Therapy since no surgery will be involved here.  Radiation at Mayo has to answer that though.  All the Mayo Doctors are rock stars.  Many haven't even gone to med school in the US.  Mayo pulls them in, and they redo their med boards here in the US.  So these are some of the brightest the world has to offer.  I feel bad for other countries.  But these Doctors come here and do so much research as well.  My esophageal cancer doctor has over 200 medical oncology citations in professional journals. 

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Kamoto,

Two concurrent cancers are a tough row to hoe but the Mayo Clinic is, as you mentioned, a world class hospital. Let's hope for the best treatment outcome.

Stay the course.

Tom

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