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Forrest J

Tagrisso EGFR

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Hi Everyone! Who's on Tagrisso? I was diagnosed in 11/18 with Stage IV NSCLC with the EGFR mutation and my oncologist put me on Tagrisso in mid-Dec 2018. (I'm in mid-60s--old or young??). In about a week I could tell that tumors were shrinking a lot. I had lymph nodes under arms and in neck that seem to have "disappeared" (to my observation and checking by feeling where they are/were). Next CAT-scan next week. Also mets in bones, tumors next to spine, and some elsewhere. Not really much of anything in the lungs--weird for Adenocarcinoma? But. I've had lots of side effects: the odd blistery, pimply rash head, neck, upper back, chest, moves around a bit. Had a big problem with foot/leg edema for a couple of weeks, but also could have been Decadron, which we greatly reduced, and improved. Fingertips keep getting skin splitting almost like little cuts, thumbs and index mostly. Some fatigue, but exercising daily anyway!

What about any of you who are also taking Tagrisso? Side effects? Tricks or treatments for them? Good signs of stability or improvement of your tumors or other cancer spots?

Any information would be appreciated, and I will keep you posted of my progress or lack thereof as I can. I'd like to be "in this together" with those in my boat :) Thanks!!!

P.S. I don't "Facebook," so I can't use any links to groups or people there. (Sorry for me, I guess!)

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Hi Forest, 

I'm an ALKie mutant taking a targeted therapy in the same drug class as Tagrisso.  I don't do Facebook either.  There are other EGFR mutants on this forum so no problem getting your questions answered.  

Tagrisso is known as a TKI- an inhibitor to stop the gene mutation. The therapy works FAST- I had horrible coughing spasms and they stopped after one dose of medication.  I also had spinal mets and the last MRI I had a few days ago indicates the mets are GONE.  

Fatigue and edema are very common TKI side effects.  We've become fans of organic beet juice (yuck).  I take 4 oz twice a day and mix it with San Pellegrino sparkling water.  This seems to help with the edema.   Epson salt baths help too.    As for the fatigue, I have it too, however acupuncture and Gi Gong/Tai Chi once a week had been a huge boost.   I thought the Gi Gong was a little out there but was willing to give it a shot.  Didn't realize the impact it was having until snowstorms canceled me two weeks in a row. 

Doesn't matter if you're a mutant or not- the forum peeps are a GIANT source of support.  You might also want to read Diana Lindsay's "Something More Than Hope". She is a long term EGFR survivor,  a pioneer if you will.  I found her journey to be very inspiring.  

I have a CT scan next week too- let us know how it turns out!  

Michelle 

 

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Hi, Forrest,

I'll reach out to some of our community members who are EGFR+ and encourage them to respond in this thread!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hi everyone, I' m italian and sorry for my english...my questione is if Egfr is ereditary...my mother have Lc Egfr+exone21 age 73 after breast six years ago...thanks

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Ciao Ale.  Sto usando Google translate per tradurre questo in Italiano.  Mi dispiace per la diagnosi di tua madre. Avevo l'adenocarcinoma del NSCLC con una delezione dell'esone 19 di EGFR.  Sembra che tu stia chiedendo se le mutazioni del cancro dell'EGFR sono ereditarie.  Le mutazioni di EGFR sono una mutazione somatica delle cellule tumorali stesse. Ci sono anche mutazioni genetiche germinali del DNA delle persone che possono essere testate.  Le uniche mutazioni germinali di cui sono a conoscenza che si pensa siano ereditarie e siano un indicatore di una predisposizione per il tumore mutato con EGFR è la mutazione germinale T790M. Puoi trovare maggiori informazioni al link sottostante.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6131180/

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Thanks, I'm afraid because I'm a little smoker from when I 20 years (now 45 years old) and my mother never smoker... sorry for my english...someone knows if is it possible complete remission about pleural mets with Tarceva 100mg? My mother have only this.... thanks kiss every One

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I understand being scared.  I am a 43 year old never smoker.  I have a pretty significant history of cancer , mostly lung cancer.  The best advice I can give is to be diligent and talk to your physician about whether or not you should be screened.  

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Che tipo di storia familiare hai? Io solo mamma e sei anni dopo un seno operato e radiato, riguardo allo screening ho parlato con diversi dottori i quali dicono cose discordanti...ho fatto una lastra ad ottobre giusto per far qualcosa...sto cercando di fumare il meno possibile intanto e sto seguendo ogni notizia al riguardo. Ti abbraccio e grazie

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Io uso Google Traduttore. La mia bisnonna paterna è passata dal cancro al seno o ai polmoni. I record non sono chiari. La mia nonna paterna aveva un cancro ai polmoni ed era stata trattata con radiazioni negli anni '80. Passò di cause non correlate nei suoi anni '90. Mio padre e quattro delle sue sei sorelle avevano un lungo cancro. Tutte tranne una di quelle sorelle sono passate. Anche mio padre, suo fratello e una delle sorelle avevano i sarcomi dei tessuti molli. Recentemente sono stato disgnosed con NSCLC Adenocarcimona. Ho avuto una lobectomia in alto a destra per rimuoverlo. Non ho bisogno di alcun trattamento di follow-up, solo scansioni periodiche. Sto facendo testare il mio intero genoma per eventuali mutazioni genetiche della linea germinale. Spero di avere presto questi risultati.

Ti incoraggerei a smettere di fumare. È una buona scelta di vita indipendentemente dal cancro. Da quello che so mutazioni genetiche ereditarie della linea germinale per il cancro sono molto rare. C'è più ricerca in corso su di esso, ma c'è ancora molto da imparare.

Translation...

I use Google Translate.  My paternal great grandmother passed from breast or lung cancer. The records are not clear. My paternal grandmother had lung cancer and was treated with radiation in her 80's. She passed of unrelated causes in her 90’s. My father and four of his six sisters had long cancer. All but one of those sisters have passed. My father, his brother and one of the sisters also had soft tissie sarcomas. I was recently disgnosed with NSCLC Adenocarcimona. I had an upper right lobectomy to remove it. I do not require any follow up treatment, just periodic scans. I am having my entire genome tested for any germline genetic mutations. I hope to have those results back soon.

I would encourage you to stop smoking.  It is a good life choice regardless of cancer.  From what I know hereditary genetic germline mutations for cancer are very rare.  There is more research being done on it, but there is lots still to be learned.  

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Ciao, grazie per il tuo racconto familiare...io ho solo mia mamma con questo problema ma siamo preoccupati perché non ha mai fumato in vita sua e io ho due bambini piccoli; sto cercando di smettere di fumare e sto cercando una linea di monitoraggio per questo. Ti abbraccio ancora, rimaniamo in contatto! Ciao dall'Italia

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Le persone che non hanno mai fumato possono contrarre il cancro ai polmoni senza avere mutazioni ereditarie. Il numero di persone che hanno un cancro ai polmoni che non hanno mai fumato e non hanno mutazioni è sorprendente per molte persone. Ci sono altre sospette cause ambientali. Radon, inquinamento atmosferico, fumo passivo. L'elenco delle possibili cause è piuttosto lungo.

Translation...

People who have never smoked can get lung cancer without having any hereditary mutations.  The number of people who have lung cancer who have never smoked and dont have mutations is suprising to a lot of people.  There are other suspected environmental causes.  Radon, air pollution, second hand smoke.   The list of possible causes is pretty long.  

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Hi, All,

I don't know if the EGFR mutation is genetic, but I believe it is. As it stands today, In the US Tagrisso is now (since 4/2018) considered the best first line of defense/attack against metastasized NSCLC. Terceva was the therapy of 1st choice prior to this. However, I do not  think Tagrisso has been found effective against breast cancer yet. I am still doing OK, many tumors have shrunk. I feel good many/most days and exercise daily. All the best everyone! By the way, off of Decadron--it brought many unwelcome side effects.

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