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Tom Galli

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Status Replies posted by Tom Galli

  1. Hello Tom.  Yes, my friend's situation is very sad. I purchased your book, Scanziety recently because I want to learn as much as I can to help my friend. Even though your experience is different,  it still was of great value because of all the great insight you share that is beneficial to someone in his situation from a psychological, emotional, and spiritual level. You give people hope and support a fighting spirit, and that is what my friend needs right now. It's giving him a sense of peace within his turmoil.  It's one day at a time, and he is staying the course!  Blessings to you and keep up the good work! 

    1. Tom Galli

      Tom Galli

      Thank you Jay.

  2. Ciao Tom, sono Ale dall'Italia e ti scrivo perché mia mamma ha fatto la Pet con questo risultato: nodulo polmonare lievemente in aumento ma con captazione ridotta mentre a livello pleurico l'accumulo è in parte sparito e sul resto captazione ridotta, nulla altro in nessuna altra parte del corpo. Perciò risposta metabolica parziale al trattamento...cosa ne pensi? Possiamo sperare di debellare la malattia? Prende Tarceva da dicembre... Grazie mille!! Ciao

    1. Tom Galli

      Tom Galli

      Ale,

      OK, capisci che il nodulo è leggermente aumentato di dimensioni ma l'assorbimento è ridotto. Questo mi direbbe che Tarceva sta funzionando.

      Misurare le dimensioni del tumore mediante scansione è un'arte. Il radiologo non può davvero essere preciso con la misurazione, quindi le dimensioni variano leggermente da una scansione all'altra. Ma il valore di assorbimento può essere misurato in modo molto più accurato e hai riportato un valore di assorbimento ridotto. Ciò significa che il tasso metastatico del tumore è diminuito, molto probabilmente a causa del successo del trattamento con Tarceva.

      Sì, credo che tu possa sperare in nessuna prova di malattia in tua madre.

      Mantenere la rotta.

      Tom

    2. (See 1 other reply to this status update)

  3. Ciao Tom, scrivo dall'Italia per mia mamma (73 anni adenocarcinoma Egfr con interessamento pleurico) in cura con Tarceva 100mg... lunedì avrà una Tc di controllo...avrei qualche domanda da farti:

    _ hai saputo mai che la pleura possa guarire o cicatrizzare? Cioè portare a Ned mia mamma? Ha solo un nodulo che ha risposto parzialmente e la pleura (niente altro)....

    _ sai se è ereditario un adenocarcinoma Egfr (6 anni fa ebbe anche un seno con operazione è radioterapia...)

    _ essendo da sempre un leggero fumatore che esami o test mi consigli? Ho 45 anni e due figli...

    Grazie grazie grazie!!! Ciao

    1. Tom Galli

      Tom Galli

      Ale, Ho conosciuto il carcinoma polmonare da adenocarcinoma trattato con Tarceva per raggiungere il NED? Sì. Ricordate, credo di averti detto di un amico che ha vissuto 10 anni dopo il trattamento con Tarceva per l'adenocarcinoma. Sfortunatamente, è passata con un attacco cardiaco non correlato. Non saprei se l'adenocrcinoma di qualsiasi forma è ereditario. Quando dovresti essere testato Se fumassi, sistemerei una tomografia a bassa dose per scovarti per i tumori. Mantenere la rotta. Tom

    2. (See 1 other reply to this status update)

  4. Hi Tom and thanks, I'll write a message in italian, please use traduction... thanks

    1. Tom Galli

      Tom Galli

      Se tua madre fosse stata curata negli Stati Uniti, avrebbe fatto una scansione ogni 3 mesi. Quindi, il suo prossimo esame TC o PET dovrebbe aiutare a rispondere alla tua domanda sul potenziale chirurgico o Tarceva che controlla i suoi tumori. Non ne so abbastanza del sistema medico italiano per commentare la chirurgia. Normalmente, se la chirurgia è un'opzione, è comune averla prima della chemioterapia o della terapia mirata (Tarceva). Quindi alle domande di chirurgia viene data una risposta migliore dai suoi medici, amici e familiari in Italia. Altrimenti, penso che tu sia sulla strada giusta. Quando Tarceva funziona, normalmente funziona molto bene nel produrre nessuna evidenza di malattia (NED). Mantenere la rotta. Tom

    2. (See 1 other reply to this status update)

  5. Hi Tom,  I'm italian and sorry for my english...my mother have Lc Egfr exone 21 with only pleural mets, she have a talc in october and have Tarceva 100mg from dicember. In march have a tc that says a parzial remission...I have a question for you: for you is it possible a complete remission on pleural mets?? Because she have only this.... thanks thanks!!

    1. Tom Galli

      Tom Galli

       Ciao Ale,

      Non preoccuparti per il tuo inglese. Scrivi in italiano Userò la traduzione di Google per leggere il tuo post.

      Comprendi che tua madre ha un NSCLC con una mutazione di EGFR Exon 21. Sta ricevendo il trattamento mirato alla terapia Tarceva. Ho ragione?

      La tua domanda è che ci può essere una remissione completa per la sua metastasi plurale con questo trattamento. Sì, questo è un possibile risultato. Ma spesso il cancro del polmone si ripete, quindi non usiamo termini come la remissione completa o la cura. Usiamo il termine senza evidenza di malattia (NED).

      Il NED è possibile, infatti, il NED è possibile. Conoscevo una donna che viveva da 10 anni prendendo Tarceva e sarebbe vissuta più a lungo, ma ha subito un ictus che ha interrotto la sua vita. Spero che il trattamento di tua madre abbia successo.

      Mantenere la rotta.

      Tom

  6. Could you tell me about your lung cancer experience? Like how you found out you had it and what stage and how you were treated and with or without a spouse etc.....

    1. Tom Galli

      Tom Galli

      Brenda,

      On a Monday evening in February 2004 I was suffering symptoms of a nasty chest cold and I started coughing and it produced blood.  Several days later, in a hospital emergency room I was x-rayed and the emergency room doctor told me I had a very large mass in my right lung.  The mass was causing the blood.

      I was admitted to the hospital for further tests.  I had a CT scan, brain scan and bone scan.  Additionally, a biopsy was attempted with a flexible bronchoscope but the mass that was contained in my main stem bronchus of my right lung was so large, it could not be biopsied with a flexible scope. On discharge from the hospital, my oncologist told me I likely had lung cancer. He didn't know the type but suggested the stage could be 3A or 3B. This stage was suggested because the CT and other scans showed no evidence of any other nodules or tumors in my body.  Stage 3B was suggested because of the size of the mass.  It was 7cm long and about 2.5cm in width and completely blocked the main stem bronchus of my right lung. 

      I was referred to a thoracic surgeon for biopsy.  The surgeon used a rigid bronchoscope to obtain a sample from the mass and additionally performed a tracheotomy (incision at the base of my throat) to access and sample many lymph nodes around my lungs.  A pathologist was in the operating room and examined all biopsy samples in real time.  The biopsy revealed Squamous cell non small cell lung cancer but none of the lymph nodes contained the disease.  My surgeon staged my disease at 3A but suggested the mass was too large to resect without damaging my trachea whose tissues were too fragile to stitch.

      On a post surgical consult, my surgeon reported that surgery was not possible. We'd (my wife who was my fiancée at the time) researched survival statistics for lung cancer without surgery and in those days, the prognosis was dismal. My surgeon referred me to a medical oncologist who was conducting a study of treating lung cancer with conventional chemotherapy with infusions performed in a hypobaric chamber with enriched oxygen. The theory of the study was that the increase in oxygen would make the chemotherapy more effective.  I had a weekend to make a treatment decision.

      I told my general practitioner about the surgeon's conclusion and study recommendation.  He left the examining room and called my oncologist (who knew nothing about the surgeon's recommendation yet) and told him to find a way to shrink the mass to allow surgery.  The oncologist prescribed 30 doses of conventional radiation with weekly infusions of taxol and carboplatin. He spoke with the surgeon who agreed to rethink the surgery decision if treatment dramatically reduced the size of the mass.  It did and in May 2004 my right lung was removed.  I was scheduled for post surgical chemotherapy but this never happened because of surgical complications that required two more surgeries to correct.

      There is a book called Scanziety available on Amazon that tells the entire story if you are interested.  Click on the word Scanziety and it will take you to the book.  You can read a good deal of it by clicking "Look inside".

      That is how I was diagnosed and my initial treatments.  I would have many more to achieve NED.

      You asked how I was treated and I assume you mean by my medical team.  I was very fortunate to have a stable of caring, competent and capable doctors.  I believe this was so because my general practitioner personally recommended them.  He'd referred other patients to these doctors, he knew the doctors, and his opinion carried weight with the oncologist and surgeon.  Likely, my general practitioner's refusal to accept no surgery saved my life.

      At the time I was diagnosed I was unmarried but engaged to be married with Martha.  After my hospital stay, Martha moved from Lexington, KY to Rockwall TX to help me with treatment. She'd just graduated from a masters degree program in Nutrition and her next step was an internship that would have led to a career as a registered dietitian.  But, she gave up her internship to care for me.  I was fortunate to work for a company that had rich long and short term disability coverages that saw me through my medical treatment.  I also have a feature rich medical insurance policy that covered almost all treatment cost with a very small deductible.  I paid for disability and medical coverages but so did my company.  I had retired military medical coverage (Tricare) but did not use it for any of my cancer treatment.

      I would not have been able to go through my treatment alone.  I hope this long answer addresses your request.

      Stay the course.

      Tom

  7. Tom did you have pressure in your throat at any time before your surgery I feel as I  have difficulty swallowing and worry that this can stop surgery I know you have fought so many hurdles and have experienced more than anyone should thanks.

    1. Tom Galli

      Tom Galli

      Sharon,

      No I did not feel pressure in my throat before my surgery. 

      Where is/are your tumor(s)?

      Tom

    2. (See 1 other reply to this status update)

  8. Hey, Tom,

    Just tried to send you a private message, and got a notification you "cannot receive messages"--do you know what's up with that?

    Teri

    1. Tom Galli

      Tom Galli

      The site was down a while ago and I couldn’t send or receive anything. 

      Tom

    2. (See 1 other reply to this status update)

  9. Tom what do u do for pain if u have any I got St 4 lung bone cancer and my rib n lung kill me

    1. Tom Galli

      Tom Galli

      Lorrie,

      I do indeed have chronic pain. I had three thoracic surgeries in less than a year and the surgeon used the same incision site for all three. Plus, the last one involved removal of two ribs and my right pectoral muscle.  So I have some rib pain in the front chest.  I deal with these conditions everyday and coughing, sneezing or a muscle cramp in my chest, back or abdomen can make my pain unbearable.  I have two strategies for coping.  

      First, I try and get through every day without taking pain meds.  During the summer, I stand in our community pool and the buoyancy effect provides some relief. I only deal with the pain at night, when I need to sleep.  

      I have all kinds of narcotic medication available to use but I don't use it often.  I don't like the narcotic haze and hangover the next day so they are my last resort.  I take two 0.5 mg of Xanax about 1/2 hour before I want to fall asleep.  This normally makes me drowsy enough to relax and sleep.  If needed, I take a third Xanax pill and some nights it is needed.  This methods works most of the time for me.

      Second, I also use lidocaine patches that my wife applies to my incision scars and front ribs.  These work, especially when my pain is elevated by a bout of coughing or sneezing.  We use surgical tape to fix the patches so they stay firm against my incision scars and front chest.  Lidocaine for spikes and Xanax to relax for sleep and temporary relief in the pool during the day is my strategy.

      Sometimes things get so bad that I take prescribed narcotic medication.  But, I've learned to tolerate the pain and as long as I can get some sleep, I can tolerate it during the day.  But, I really try and avoid sleepless nights.

      I hope this explanation helps you.

      Stay the course.

      Tom

  10. Tom-How did your body respond to complete removal of the lung? How have you adapted?

     

    1. Tom Galli

      Tom Galli

      Roz,

      How did my body respond to my lung removal? I was well on the way to surgical recovery until about 5 days after hospital discharge.  Then I started running a high fever and was back in the ICU and that started a year's worth of surgical complication.  Once this resolved, tumors were found in my left lung so I went from surgical mayhem to chemotherapy mayhem that lasted 2 years.  I have chronic pain because the surgeon had to re-enter my chest in incision area for 3 operations and I've suffered substantial nerve damage.  That is unusual.  Most I know only have one procedure and recover quite quickly.

      How have I adapted with one lung?  Well -- I can walk enough to enjoy touring though cities while on vacation.  I can't run very far.  I get winded climbing moderate hills but managed all the steps to get to the Edinburgh Castle from street level.  I hope this helps.

      Stay the course.

      Tom 

  11. Tom, not sure where you are in Texas but I am sure there are no ok areas right now. I hope I am wrong about that. Wishing you and yours safety. And the same for all those affected by this monster storm, Harvey.

    1. Tom Galli

      Tom Galli

      Thanks Karen.  We actually live in Rockwall, about 700 miles distant from the Gulf Coast.  All we've experienced is cloudy skies and showers.  Appreciate your concern.

      Regards,

      Tom

    2. (See 1 other reply to this status update)

  12. You have inspired me, Tom. We  live in philly, but own a 41' sailboat on the Chesapeake, and my prayer is to be able to sail every weekend on non-chemo weeks when I feel well until the seasons change. Thank you for the hope. I'm a newbie, and don't know where to find your story but will search. You brought tears of hope to my eyes and heart. Emily

    1. Tom Galli

      Tom Galli

      Thank you Emily. I grew up in the Philly suburbs and know the back bays of the Chesapeake well. The long version of my story is the book "Scanziety" in the Kindle Store, an ebook on Amazon. The short version is on my profile. 

      Stay the course. 

      Tom

  13. Tom, 

    If I recall, you had a CT last week and will be going in for the results tomorrow? 

    Just wanted to say I'm thinking of you and your wife, and waiting for the best of news. <3

    Meloni

    1. Tom Galli

      Tom Galli

      Thank you Meloni!

       

  14. Hello!  My father went to see the medical oncologist Wednesday (1/3) and starts chemo 1/16 with carboplatin and Docetaxel.  His radiation will start around the same time.  There has been problems with the site chosen because although it is near their home...it was just opening the first week of January...so probably back to the Kirklin Clinic which is further away but the established site.  

     

    Question/Comment:  Yesterday my mother told me my father felt this was all for nothing and the outcome was going to be the same no matter what.  It really took me by surprise...I am devastated by this attitude.  I understand (and feel the same) the ups and downs of emotions but I want him to feel hopeful.  His regular MD prescribed klonopin for his nerves and sleep problems.  All of the information about survival is depressing but things are changing so rapidly, with so many stories of survival on here (including yours)...am I wrong to feel that he can live and manage this??  And in the end isn't the outcome the same for everyone anyway, cancer or not?  I just don't want to have my rose-colored glasses on and be steering towards something that isn't...Thanks!

    1. Tom Galli

      Tom Galli

      When it comes to life, there are only two certainties: birth and death.  Neither event is predictable with certainty.  A lung cancer diagnosis doesn't change the two certainties.  So, are you wrong to feel he can live and manage?  No, but it doesn't matter how you feel; it matters how your father feels.

      I have no scientific or medical foundation for my view on a patient's attitude toward lung cancer treatment and outcomes.  I have a belief and while not medically grounded, it parallels successful person-to-person interactions in everyday life.  If I present myself as a patient who cares about my treatment, who is engaged and inquisitive, who cares about outcomes, and has a desire to live; the people who treat me might just take an extra step, run another test, search another journal because I have a sanguine attitude. That something extra is what saved my life.

      Stephen J. Gould said it best in his wonderful essay "The Median isn't the Message".  Play the linked youtube for your dad.  Stress the importance of acquiring a sanguine approach toward his treatment. 

      Stay the course.

      Tom

  15. Hi!  So, we went to see the radiation oncologist and he wants to 6 weeks of therapy and an MRI of the brain...just to check.  He says we are hoping to cure this.  So far all of the doctors, when asked, say "it looks like NSCLC" and "it looks like squamous"  Why do they not answer in the definitive?  Is this normal?  The next appoints are Jan 3--medianscopy, Jan 4--medical oncologist, Jan 5--simulation, and somewhere in there the MRI--to be scheduled.

    1. Tom Galli

      Tom Galli

      This will be short. Responding with iPhone. Never heard of 3c stage. 3a or 3b is likely stage. No oncologist I know uses the work cure. Lung cancer is persistent. But, they've been controlling my disease for nearly 13 years. 

      Stay the course. 

      Tom

    2. (See 6 other replies to this status update)

  16. Hi!  So, we went to see the radiation oncologist and he wants to 6 weeks of therapy and an MRI of the brain...just to check.  He says we are hoping to cure this.  So far all of the doctors, when asked, say "it looks like NSCLC" and "it looks like squamous"  Why do they not answer in the definitive?  Is this normal?  The next appoints are Jan 3--medianscopy, Jan 4--medical oncologist, Jan 5--simulation, and somewhere in there the MRI--to be scheduled.

    1. Tom Galli

      Tom Galli

      I've had perhaps a dozen bronchoscopies.  I never experIenced shortness of breath after, just a sore throat. But, everyone reacts a little differently so perhaps they didn't cause me shortness of breath  

      If you've had multiple biopsies, it is unusual for uncertainty about cancer, yes or no, and if yes, the type. Normally the pathology exam is proforma. Perhaps the needle biopsy didn't get a good sample but they normally get two or three tumor samples. Something strange is going on. I'd ask for copies of the pathology reports. They are pretty easy to understand. 

      Are you being treated in the US?

      Stay the course.

      Tom

    2. (See 6 other replies to this status update)

  17. Hi!  So, we went to see the radiation oncologist and he wants to 6 weeks of therapy and an MRI of the brain...just to check.  He says we are hoping to cure this.  So far all of the doctors, when asked, say "it looks like NSCLC" and "it looks like squamous"  Why do they not answer in the definitive?  Is this normal?  The next appoints are Jan 3--medianscopy, Jan 4--medical oncologist, Jan 5--simulation, and somewhere in there the MRI--to be scheduled.

    1. Tom Galli

      Tom Galli

      Assuming there is no biopsy, uncertainty is the order of the day.  So yes, this is normal.  Radiation however does not depend on a definitive type diagnosis.  It will disrupt any kind of lung cancer and even tumors that are not cancer, like a meningioma.  So assuming the 6 weeks of therapy is all radiation, knowing the type definitively, is not really important.  However, for chemotherapy, it is essential.  So the medical oncologist will likely weigh in and require a biopsy before a chemotherapy treatment plan is formulated.

      Stay the course.

      Tom

    2. (See 6 other replies to this status update)

  18. Hi Tom.  It was encouraging reading your post this morning.  I just signed up a few minutes ago for information and encouragement and WOW .... there you were.  I have been diagnosed with Squamous Cell and I start treatment next week as the resection wasn't possible once they opened me up.   I do believe I am a very positive person and am very optimistic that I am going to conquer this 'intruder'. 

    1. Tom Galli

      Tom Galli

      Rita,

      I'm glad my words were of value.  I'm also happy about your optimistic attitude.  But, most importantly, realize there are no guarantees in lung cancer treatment.  There is however a common treatment result that people often fail to realize.  Treatment often results in extra life.  "How much?"  Wrong question in my view.  "What to do with it?"  This is a much better question and one I suggest you ponder.

      Now, go beat the beast!

      Stay the course.

      Tom

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