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Tom Galli

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Posts posted by Tom Galli


  1. JayGee,

    Can you avoid more chemo? I restate your question to should you avoid more chemo? If it were me, I would not.  I note your statement "the tumor was more than 10% alive upon resection." This to me indicates your pre-surgical chemoradiation reduced the tumor size but did not kill the beast. I had pre-surgical chemoradiation also (30 rounds of conventional fractional radiation and 18 weeks of once weekly Taxol and Carboplatin). When my right lung was removed, pathology indicated the very large tumor in my right main stem bronchus was completely scarred down. I was to receive post surgical chemotherapy (Taxol and Carboplatin) but surgical complications made that impossible. After the complications were resolved, new metastasis were discovered in my remaining lung.

    Lung cancer is so dangerous because it is persistent and frequently recurs.  I've experienced four in my treatment history. Here is the summary of an interesting report on lung cancer recurrence by stage. Your dose of adjuvant chemotherapy will likely be lower than that used to attack tumors. The adjuvant purpose is to attack cancer cells in the blood and lymphatic system and lower doses are effective in that application. I've experienced the misery of recurrence and therefore recommend you do everything you can to ensure one is not in your future. The taxol in reduced dose rate may not cause your hair loss.

    I'd take the chemo.

    Stay the course.

    Tom


  2. JC,

    Everyone's pulmonary function to lung removal varies so there is no way to predict reaction. My normal (resting) heart rate went up dramatically to about 90 to 99 bpm after a right pneumonectomy about 16 years ago. Tumors blooming in my remaining lung were successfully treated but the scarring further affected my pulmonary capacity. With a reduced O2 inflow, the body needs to circulate oxygen faster to satisfy a normal demand thus the heart rate increases. 

    If I have to exert myself, I suffer shortness of breath and dizziness. I also have trouble on long airline flights because the planes are pressurized at oxygen concentrations found between 6,000 and 8,000 feet (O2 concentration lower than sea level). But, I've lived a near normal activity level life with my reduced pulmonary capacity and increased heart rate without the need for supplemental oxygen.  Further, I was told that aerobic exercise would not improve my pulmonary capacity or circulation efficiency.  I hope this information helps.

    Stay the course.

    Tom


  3. Patty Mac,

    In February I’ll celebrate my 16th year of survival. Five years ago, I moved from 2 scans a year to one. My doc tells me I’ll have at least one scan a year for the rest of my life. It is a minor inconvenience compared to the alternative. 

    Stay the course. 

    Tom


  4. Darla,

    Lin’s mention of a trial is the first I’ve heard about validating the theory. My knowledge started with a lengthy discussion with a radiation oncologist at a Lunch and Learn. In my case, this doctor believed the stereotactic radiation alone extinguished recurrences but his rational was theoretical. Now a trial has a chance of moving from theory to practice. 

    On stereotactic radiation, some have it in place of surgery alone or in combination with chemo as first line treatment. Mine was a fourth line treatment without chemo. Radiation oncologists are getting aggressive with the method. Some treat Stage IV disease “spot welding” or “scarring down” tumors as a curative approach. Why not fry tumors? There is no surgical risk. I bet health insurance doesn’t cover stage IV because it is not a standard of care. 

    Stay the course. 

    Tom


  5. Melisandre,

    Wow—an unusual presentation and interesting dilemma. For information, I had Sjogten’s markers show up in blood work incident to my diagnosis but symptoms didn’t start till about a year ago. That’s 16 years from diagnosis to symptom onset. 

    First, you can post anywhere you wish. The “durva” group is an interesting resource and you are most welcome anywhere on this forum.

    So about your limbo, my view is hoping you are NED already and discussion of immunotherapy for recurrence is an academic exercise. But if it were me, I’d try the immunotherapy. In fact after my third recurrence I had Tarceva in combination chemo. This targeted therapy drug is now only used for a very small population of adenocarcinoma NSCLC folks who display requisite markers. But in the Jurassic era of lung cancer treatment, oncologists threw everything at a recurrence. All I got were side effects. But, lung cancer survivors grasp at possibilities even with low probability of success. 

    Consistent with your doctors advice, I’d try the immunotherapy. I’ve read too much good news about the therapy. 

    Stay the course. 

    Tom
     

     


  6. Lin,

    This is the first I've heard of a trial of stereotactic radiation coupled with immunotherapy. My lung cancer was very persistent with 4 recurrences after what were supposed to be NED producing treatments. My last treatment was stereotactic radiation and in my research at the time, literature discussed an unproven secondary effect called the Abscopal Effect. Essentially, the high power focused radiation disrupted the cancer cells in such a way that alerted the bodies immune system to recognize and destroy other or future metastasis. I believe my stereotactic radiation alone stopped future recurrences. My last treatment was in March 2007 and I've been NED since.

    I do very much hope your PET scan shows NED and I really, really hope it stays NED.

    Stay the course.

    Tom


  7. Blossomsmon,

    Of course your life extension vice side effects concern is an appropriate question. Moreover, since extended life is the objective of treatment, the cost (money and hardship) and quality of the extension is the most important and essential question. I'd ask both the NP and medical oncologist. That said, there is no universal answer. Certainly age is an important factor but in-treatment side effects are very variable. 

    Stay the course.

    Tom

     


  8. Liveurlife,

    A long while ago, my medical oncologist told me their practice would no longer use the word "cure" for any stage or type of lung cancer. Part of what makes our disease so dangerous is its propensity to recur.  I had four and each was a kick in the teeth. Therefore, I get your anger and powerlessness but ask you to think a while about weakness.  Your husband is going to look to you for strength. He'll need to lean on you and gain courage to sustain the treatment battle. While you may not have power or control over his cancer, treatments or outcome, you absolutely are in charge of your attitude.  I say: stand up, put your battle rattle on, lock and load, and proceed to decisively engage his lung cancer! You must have faith his treatment will work and once you have faith, you'll find hope.

    Stay the course.

    Tom


  9. Lisa,

    I had two bronchia fistulas: the first after a pneumonectomy of my right lung, the second after a fistula repair attempt with omentum. Unfortunately, after the repair attempt, the sutures gave way and I found myself in the ICU for 6 weeks in an induced coma like your dad. As they eased off the sedation and removed the endotracheal intubation tube, I developed pneumonia and then aspirational pneumonia because my epiglottis stopped functioning. I had to recover to face another gruesome surgery to once again repair the fistula. So, here is my hope. Come February, I will have survived 16 years after diagnosis of my lung cancer and four thoracic surgeries in a year, three tracheal stent insertions and removals, sixteen infusions of chemotherapy, thirty fractional radiation sessions and one stereotactic body radiation therapy treatment. If I can live, so can your dad.

    So, where to begin. First, take care of yourself. Your mother and you are noble and demonstrating love and care by being bedside. But, given my recollection of ICU sedation, I didn't recall anyone being bedside (despite visits from everyone in my family). In fact, I have no memories of that time in the ICU. My surgeon told me the anesthesia has an effect of tamping down short term memory. So take some time off and rest. You'll need your strength and stamina for his future treatment.

    When you do visit, try and arrange a meeting with your dad's thoracic surgeon. Managing a bronchia fistula is a challenging medical procedure and is best explained in a quiet room away from the ICU. Focus on understanding the methods the surgeon will use to repair the fistula. Understand the unique challenges of recovery, including possible discharge with a chest tube and drain. Ask about the utility of an elevated bed to ease surgical recovery pain at home and if recommended, line up sources for rental or purchase. Will supplemental oxygen be necessary? Try also to have a hospital conference with your dad's medical oncologist. Normally, post surgical chemotherapy is given and assuming the fistula is resolved, you'll need to understand and plan for this therapy if necessary.

    My wife and family understand the torment I went through during my lengthy ICU stay. Fortunately, I don't and I'm hoping your dad's recollection parallels mine. If you feel the need to go to hospital everyday, then alternate your visits. Rest now to prepare for the future battle.

    Stay the course.

    Tom


  10. Bagley,

    Welcome here. I completely understand how unsettling a lung cancer recurrence can be.  I've had four! You didn't mention where in your body the recurrence is located.

    I think you'll find chemo/radiation to be an effective treatment. Here are some infusion tips and tricks that helped me.

    Stay the course.

    Tom


  11. Fishon,

    My SBRT was a 15-minute treatment given in 3 successive days. There were no side effects, unlike my experience with the 30 days of conventional radiation. 

    SBRT is often an alternative for surgery. you may find a combination of conventional chemo with immunotherapy is the next line of treatment. If it were me, I’d have that along with SBRT. 

    Stay the course. 

    Tom


  12. Fishon,

    Welcome here. Very sorry to learn of your wife’s recurrence. Frequent recurrence is what makes lung cancer so difficult to arrest. I’ve had 4 recurrences after no evidence of disease (NED) yielding treatments. 

    I encourage you to consult with a radiation oncologist to learn if precision radiation (stereotactic body radiation therapy or SBRT) can fry that adrenal tumor. Note SBRT can be given in combination treatment with chemo and at this juncture, I’d advise the more treatment methods, the better outcome. 

    Stay the course. 

    Tom


  13. Brian,

    I’m not sure if one can predict a metastatic site for any flavor of lung cancer. There are general patterns, for example, small cell often moves to the brain but nothing I’ve encountered that cites a specific pattern of movement. I do believe lymph nodes in proximity to the lung are often first effected, but I’ve known many who had organ and bone mets without lymph node involvement. 

    I don’t know what the underlined and bold text in the pathology report means. 

    Stay the course. 

    Tom


  14. Jdf,

    Welcome here. Having said that, I'm sure you would rather be enjoying your life and children than worrying about lung cancer. So, let's start with some questions. You said stage IV adenocarcinoma but report only one location of a tumor--the left lung. Are there tumors in the lung and in the pleural space between the lung and interior chest wall? Because you are diagnosed so young, there is a chance your adenocarcinoma might display biomarkers that point to a targeted therapy as a potential treatment. To confirm, a special laboratory performed tissue biopsy (not blood test) analysis is required. Your diagnosis resulted from a fluid biopsy. Has your doctor suggested a tissue biopsy to screen for targeted therapy as a possible treatment?

    Stage IV adenocarcinoma outcomes have really improved in the last 10 years. To explain the inaccuracy of "Dr. Google" survival statistics and reinforce Michelle's suggestion of Gould's essay, read here.  And here are some tips and tricks that might help as you go forward into treatment.

    In February, good Lord willing, I will have survived sixteen years after diagnosis with lung cancer. I had many surgeries, lots of infusion, and glow in the dark from radiation, but I'm here. That suggests that if I can live, so can you.

    Stay the course.

    Tom

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