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Kamoto

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Posts posted by Kamoto

    New Member

    in INTRODUCE YOURSELF!

    Posted

    Dublin CA?  Hah, I spent the past 20 years living in East Dublin near Dougherty Elementary.  I moved to Bozeman MT to escape the crazy lockdowns of the pandemic.  My chemo/radiation trips to Bozeman Health were only 15 mins and six miles away.  I can't imagine driving over the bridge every day to get to Stanford from Dublin. 

    I have to add, your a trooper to go through chemo at 75.  The ONLY reason I did chemo/radiation was I would eventually choke to death with no warning that it was about to happen (Stage II Esophagus and Stage IV Lung).  Stupid chemo nearly killed me at 58.  If I didn't have a forty pound stomach I likely would have been a goner.  If the stupid lung cancer requires chemo/radiation the answer from me would be no.  I'm one and done with that toxicity.  So good on you for going through it at 75.  I'm impressed. 

    spiculated lung nodule found

    in INTRODUCE YOURSELF!

    Posted

    Karen speaks the truth.  My oncologist was on the team who trialed Tagrisso while he was w Denver's Jewish Hospital.  His initial speculation was EGRF mutation and it most certainly was.  But when I informed him that I was getting a 2nd opinion from Mayo Clinic in Rochest MN, he welcomed it, as he was having to deal with every cancer as the single oncologist here in Bozeman MT.  He told me he couldn't keep up with advances in Lung, but that Mayo has probably fifteen specialist who only deal with lung.  Mayo Clinic agreed to his entire treatment plan, and offered nothing else they would recommend.  Why won't they do a biopsy?  My lung tumor on CT scan was 3.5 MM and they ordered a biopsy.  Once they determined EGFR mutation and malignant, they ordered the PET scan, which I lit up and they staged me at Stage IV with mets on the rib, brain, and back, as well as a seperate Stage II esophagus cancer.  People say US Medicine is terrible, but when you have corporate insurance, US Medicine is best in class.  Get the 2nd opinion in Germany or if you can afford it, fly into Mayo Clinic in Rochester MN who is setup for international patients. 

    Diagnosed March 27th

    in INTRODUCE YOURSELF!

    Posted

    HI BBTN.  Have you ever read or watched "The Secret".  Universe's law of attraction.  I've practiced this my whole life, and when cancer struck, I couldn't have cared less.  It was just something life throws at you.  Stay positive, keep a clear mind when dealing with doctors, and spend energy on productive things.  By doing this, every single nurse and doctor I've come across wants to fight cancer for me.  At week five of chemo, I was ready to give up, but the Oncologist who I trusted told me he is curing me, not treating me.  I brought gifts during Christmas for the chemo staff, as well as the Oncology staff.  I was never toxic to anyone, and by being a nice person, I was rewarded with their energies to fight for me.  I may be an outlier, and human tendency is to lash out when severely sick, but keep a positive attitude and it will serve you well.  I beat esophagus cancer, and currently beating Stage IV lung (last tumor is in the lung but reduced by 70%).  Screw cancer.  LOL

    Introduction

    in INTRODUCE YOURSELF!

    Posted

    Hello Herb.  Have a look through some of my posts, as you and I and many others are in the same boat.  You didn't say if you started on Tagrisso, but I've been on it since July of 2022.  As long as I take my immodium daily, Tagrisso has zero side effects for me.  And that stuff worked within two weeks, as my rib tumor pain was quickly erased by Tagrisso.  I was hoping for more time so I could renew my Morphine prescription, but I couldn't lie to the oncologist.  LOL.  All of my horrible periods were because of my stupid Esophagus cancer which needed Chemo/Radiation.  Good luck and Team Tagrisso is here if you need us

    TSA Screening with a surgically placed port

    in GENERAL

    Posted

    I got a beautiful AirBNB in Destin Florida with a friend for a nice two week vacation.  Was good to get out of Bozeman and this never ending 2023 Winter.  Going through the TSA screening at the airport, I got flagged for an unknown object embedded in my skin.  Told them I have Stage IV Lung Cancer and showed them the port which pushes the skin up.  I had to have my fingers wiped, and rub it on the port to determine there were no explosives in my port.  I have to say, TSA was very respectful, wished me well in my cancer fight, and only delayed me by a minute or two.  They didn't even ask to see my Tagrisso medicine which was packed in my carryon.  If they did, I was prepared to tell them they can open that up if they so desire, but if they had plans on having children, they might want to stay away from my Tagrisso.  I left the Accredo pharmacy literature on the pill bottle just in case they wanted to know what is was. 

    Kind of a gross question so pass if your squeamish

    in MEMBER UPDATES

    Posted

    Thanks to both of you.  Zero other symptoms.  And a PET scan covers the bladder and urethra I'm guessing, but will not cover the testicles.  Seems like a Ultrasound is used to scan the testicles for cancer.  Seems that Lung Cancer can metastasize to the testicles, but that would seem out of place given that Tagrisso has wiped out the brain, rib and back tumors.  As I've posted, I seem to have multiple cancers (Stage IV Lung as well as Stage II Esophagus), of completely separate origin.  I can't imagine having a third cancer as that would be my signal that I'm doomed.  Other than this new weird phenomenon, I vacationed for two weeks in Florida and I've generally felt great over the last few months.  My weight has gone up, about ten pounds, but I was still looking very good on the beach for a 58 year old guy.    

    Kind of a gross question so pass if your squeamish

    in MEMBER UPDATES

    Posted

    Anyone on Tagrisso or just finished radiation chemo who is male have semen issues?  Mine seemed to have some blood in it a month back but it’s getting worse.  Today was very brown.  Zero symptoms outside of that.  I see oncologist for checkup on Friday so I can report, and I’ll probably call accredo and speak to pharmacist

    Residual effects of chemo/radiation

    in CHEMOTHERAPY

    Posted

    Started to eat a few weeks back.  Stopped throwing up every day.  I’ve even left the house to food shop and the smells didn’t kill me.  So I think 7 weeks after last radiation treatment I felt better.  Wish I could ski or snowmobile but need to regain more strength.  Thanks all.  My daughter works for homeopathic doctor and they wanted to help but I had started to feel better.  

    Hi, my name is James

    in INTRODUCE YOURSELF!

    Posted

    Wait, January 9th to taking Tagrisso right away.  No PET scan?   No biopsy with bio marker testing?   She has EGFR mutation?   I think you left off a good many details which filling in will help.  On Tagrisso since July of 2022.  Take it at night.  Don’t skip the anti diarrheal medicine

    Stage IV lung and Stage II esophagus PET scan tomorrow

    in NSCLC GROUP

    Posted

    Getting ready for my CT scan today.  I’m still miserable, see my update in chemo forum.  But hoping to be cancer free in the esophagus.  I’ve missed about three Tagrisso pills as I was just too sick to swallow them.  
     

    Arizona is home to one of the finest hospitals in the country my Irish friend.  Mayo Clinic has a big operation in Scottsdale on the Fountain Hills border.  They also opened a new hospital in North Phoenix on the Scottsdale border.  They have a proton therapy center there so all state of the art.  Not as good as Mayo in Rochester,  but pretty close.  Feb and march are gorgeous in the desert.  

    Residual effects of chemo/radiation

    in CHEMOTHERAPY

    Posted

    Hi All,  so I’m almost five weeks post my last radiation treatment.  I’m still dealing with daily wretching, vomiting at times.  I started to be able to eat some things, and once I did, I no longer throw up yellow bile.  But if a certain smell hits me, there I go wretching.  
     

    the biggest problem is the smell of my feces.  It is beyond bad.  What could be causing it?   My daughter says bacteria causes this smell.  Is this from the esophagus repairing itself, chemo damage, anyone had this problem.   I’m doing a CT scan today and meet w oncologist tomorrow to see if esophagus tumor is gone.  But I still fell like cramp and see no end to my misery

     

    thanks

    Don’t want to continue

    in CHEMOTHERAPY

    Posted

    Wow Judy and Lily, we had the same reactions.  To avoid Monday,  I did two on Friday.  Slowly recovering now, but the dam dry heaves in the morning are draining.  So glad I have many CDs of 70s shows I watch all day while resting.  I’m 6 Ft and my weight has gone down to 164 from 197.   I look malnourished but the Dr says I came in healthy so the weight loss isn’t an issue.  I take baths now versus showers as I can’t stand for long periods of time.  My Christmas prime rib came out fantastic, but I can’t stomach meat at all right now.  Happy Holidays to all on this forum

    Don’t want to continue

    in CHEMOTHERAPY

    Posted

    Had to get forced into hospital by my daughter for hydration.  I was miserable.  Had two days of hydration which helped immensely.  Last two days of radiation are here.  Radiologist insists I finish.  I loathe him but appreciate his forcefulness.  Food taste is coming back as I’m 1.5 weeks off chemo.  But this better not come back, as I’m one and done for chemo.  

    Don’t want to continue

    in CHEMOTHERAPY

    Posted

    Thanks for the encouragement.  I was in the waiting room the other day and a stem cell replacement patient was there.  Poor guy had seven months of chemo and countless replacement therapy cycles.  I got a sense of my pain isn’t nearly as bad so mind over matter.  Two weeks in now, no hair loss and swallowing is fine.  As you say, five weeks of hell for years of health.  I’m trying, just had a mental meltdown.  Love everyone’s encouragement.  Kindly

    Don’t want to continue

    in CHEMOTHERAPY

    Posted

    To not choke from the esophagus cancer, I started chemo on Monday.  The dry heave, excessive smells, low food taste are wearing on me one week in.  Not sure this is worth it.  Five weeks of this to ruin my Thanksgiving And Christmas.  What if I don’t get another holiday shot.  lung cancer with tagrissso and this one are wearing me down.  Sorry to be so pessimistic but I don’t deal with being I’ll well.  Kindly

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