Tom Galli

Sorry to learn about the delay on switching doctors. Not sure about UK medical system but In US switching doctors for significant disease is encouraged. Remember, medicine is an applied science and it application is the physician deciding what to do and how to do it. 
Have you had SBRT already? I can’t recall. If so, I know a number who’ve had it 3 times with no I’ll effects. But brain mets are tricky. 
My view, there are 2 reasons for stopping treatment: low probability of success or tired of the side effects battering. In my 4th line treatment, both applied to me. Then I saw a radiation oncologist who had a different approach. Might this be your course?

Regards,

Tom

Rory,

The Lungevity Lung Cancer Support Community (LCSC) or our forum is not solely designated for veterans. I am a veteran and we have but one section of our forum devoted to veterans.

Veterans have special challenges when diagnosed with lung cancer. The most difficult and complex is getting access to VA treatment. Although all veterans are authorized care, that authorization is based on a priority of VA determined need. Once veterans gain access to a VA hospital, their care is on par with the nations best hospitals. We started our veterans discussion section to help them navigate the bureaucratic nightmare that is gaining access to the VA health system.

But, I believe our LCSC in total is a unique resource that serves many thousands of patients (including veterans) and their caregivers worldwide. Here is a snapshot of LCSC info and Lungevity patient outreach services. Navigate to my profile to learn more about me. I was diagnosed in 2004, have had every form of treatment except immunotherapy. I've had 5 recurrences and my message to the newly diagnosed (about 6 a day on this forum) is if I can live, so can they.

Regards,

Tom

I did not use VA facilities to treat my lung cancer. When diagnosed, I was working and covered by a company-provided health insurance policy. I've used VA health system after retirement from private sector. To your question about the process for obtaining non-VA specialist health care, does this answer your question.

Depending on the state you live in, you may be able to consult county Veterans Services officers who are very knowledgable about obtaining exemptions and permissions from VA authorities. Also helpful are VFW and American Legion posts who have experienced members to assist veterans in dealing with the VA. This help is often provided even if you do not join the organization.

Let me know if you have these resources or tell me the state you live in so I can research sources of information about how to arrange VA paid care outside the VA medical system.

Thank you Jay.

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

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

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

 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

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

Sharon,

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

Where is/are your tumor(s)?

Tom

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

Tom

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

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 

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

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

Thank you Meloni!

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

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

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

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

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