Tom Galli

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Everything posted by Tom Galli

  1. Nicole, Has your dad ever been tested for sleep apnea? This disorder is normally diagnosed by a sleep study. This could explain his breathing while sleeping difficulty. Ensure someone alerts the pulmonologist to this possibly. Stay the course. Tom
  2. Nicole, OK! Scan and some scaring left from radiation. Did the scan show no evidence of disease -- NED? Stay the course. Tom
  3. Mally, Right! Anxious time to next scan. Remember, lung cancer is persistent so keep your game face on. The 6 month scan interval is a good sign but it is just a sign. Most important is to be doing something you enjoy while surfing your NED. You got the promise of treatment -- extra life. Now have fun! Stay the course. Tom
  4. Kaly, Your brother's report is not a good one. But, Squamous cell does respond to chemo. If it didn't, I wouldn't be here. With the extent of metastatic disease, it is hard to see how radiation could be used except to moderate pain as palliative care. And, Squamous cell does not respond to targeted therapy. This treatment is only available for a percentage of those with adenocarcinoma NSC lung cancer. But, there have been recent advances in immunotherapy for Squamous cell folks. Ensure your brother asks about immunotherapy at his next doctor consult. Stay the course. Tom
  5. Vicky, How about that! Great report. I'm using a phone to respond. Helping my daughter with her brain radiation so I'm struggling with this small keyboard. But the forum format on my phone starts with one's first post. I therefore took time to read yours. Interesting, indeed. So you are on the NED road and what does one do with the gift of NED? Stay the course. Tom
  6. I'm writing this from a Florida Hospital radiation clinic waiting room. My daughter is having intensity modulated radiation therapy (IMRT) to treat her meningioma residual left over from surgery 3 months ago. This was her second brain surgery and in between was the birth of my granddaughter. Ironically, our greatest joy was sandwiched between our greatest fear. She'll have at least 30 fractional sessions. I'm here doing grandfather and father stuff, the former fun, the latter hard as nails. There are substantial risks. The tumor residual is lodged around her eye socket and the impact to her vision is of vast concern. We've talked about it. Mostly we try and forget. Daughter feeds back my mantra of only worrying about things that can be controlled but it doesn't ease my concern. Too much experience in this radiation domain to not worry. I find myself undone by uncertainty, again! Yesterday's clinical visit experience was my first in a long time. Things haven't changed. Quiet people waiting for their time with "the beast", families talking in hushed tones, most have lost hair indicating combination therapy. One change: the radio oncologist came out to greet my daughter. He supervised the fitting of the facial fixture and stayed through the entire dose application. That was unique in my experience and immensely comforting. Maybe the cancer community is learning to treat people not patients. Passing on parental knowledge and experience is expected but not on this subject matter. We need to fry this tumor, but the potential vision side-effects are disconcerting. We've got one chance, twenty-nine radiation bullets left, and then scanziety and hope. Tumor is a word I need to discard from my vocabulary. We will stay the course.
  7. Hello Raymond. Welcome here. We share a diagnosis and I had pre chemo and radiation to shrink my tumor and allow a pneumonectomy of my right lung. Sounds like you are aware of the need to be your own advocate when dealing with complex medicine and lung cancer is very complex. Your PCP's involvement is a plus. Mine was invaluable in setting up my treatment team and "nudging" them into action. Make sure your doctors know you are coughing up blood. Stay the course. Tom
  8. Andrew, I don't have any first hand knowledge about German cancer treatment centers. I googled the subject but wouldn't know how to select from the many hospitals displayed. Anyone have first hand knowledge about cancer treatment in Germany? Stay the course. Tom
  9. Hey! Mally's got a NED scan! Celebration time, do the dance. So your are on the 6 month scan program. Good for you. I can recall every other month scan frequencies. Still, that is future stuff. Celebrate now. Stay the course. Tom
  10. Steff, I am a fourth time cancer survivor. I had 4 recurrences after reaching a state of no evidence of disease (NED). So here is the hope I offer, if I can live so can your mother. Lung cancer is persistent. At some level, recurrences should be expected. Take some time to get acquainted with this site. Most of us were not "one and done" survivors. But we are here. Let us know the type of lung cancer your mom has (for example non small cell Squamous cell lung cancer). Those with a similar type can chime in and tell you of their experience. Stay the course. Tom
  11. Julie, You said it best! Stay the course. Tom
  12. Kaly, A swollen supraclavicular lymph node would indeed cause difficulty swallowing. Hopefully the chemo will address this. Stay the course. Tom
  13. Jeffrey, I found swelling a normal part of surgical recovery but have the nurse check for fluid build up in the suture area. If fluid under skin, the nurse should consult with the surgeon. Good news on benefits. Stay the course. Tom
  14. Kaly, The symptoms you report are side effect-like (fatigue, and heartburn) and not (pain and swallowing). With this potentential mixed bag, I'd report the symptoms to the doc and wait for the scan. Of course, during my chemo, I had a handful of phantom pains. Is he having radiation with the chemo? This could explain the swallowing difficulty. Stay the course. Tom
  15. Jeffrey, I wouldn't know about withdraw of benefits but I wouldn't worry about it yet. You are some distance from a NED scan and I can research your situation when I get back to my computer. Just stay focused on recovery for now. Stay the course. Tom
  16. Dave, Glad you are able to handle the treatments. Expect your throat discomfort to increase somewhat. Do you have coughing symptoms? Stay the course. Tom
  17. St. Michael, Experience with tiny non metastatic nodules? Well yes, I do. So do many others. I also completely agree on your statement about surgery and concern over possible mets in both lungs. It would not have happened. I hope her scans continue to show NED. Stay the course. Tom
  18. Mich, If "successful treatment of oncological diseases is impossible without the psychotherapeutic elimination of the oncodominant", and I didn't have psychotherapeutic elimination, how do you explain my successful treatment. Impossible has a specific and clear meaning. No scientist or physician, Russian or otherwise, would use the word impossible in that context. Therefore, I conclude Vladislav Matrenitsky M.D., Ph.D is not credible. Stay the course. Tom
  19. Jeffrey, Ok, noted. Keep up the reports, especially if home health care does not perform. How are you feeling today, by the way. Stay the course. Tom
  20. Dawn, How long can your dad live with advanced stage lung cancer? I've lived 13 and a half years. If I can live, so can your father. Susan's advice about statistics is good. If you must read something about survival statistics, then read this. And listen to the Stephen J. Gould essay cited in the document. I, like Susan, spent at least 2 years fretting about how long I'd live. When I look back on that time, I realize how wasteful an endeavor fretting about life span is. Years later, I've come to the realization that my attitude about life and treatments directly affects the quality of both. Here is an essay I posted that expands on that point of view. Your dad will likely undergo treatment that will extend his life. How long is the wrong question, my view. How well is the relevant question. Welcome here. You'll have many questions and this is a good place to ask. Stay the course. Tom
  21. Completed.
  22. Julie, I had a lot of surgeries in 2004 and a lot of pain in strange places after. I drove my wife and surgeon nuts but my surgeon wanted me to report all pain events and their early "practice portal" on line system proved invaluable. My wife would sign on to the portal and jot down a couple of sentences reporting my new symptom and that evening or the next, we'd have an answer. On one occasion, it was report to the immediately to the emergency room so these communications were vital. Does your surgeon have this type of communication portal? Stay the course. Tom
  23. Brenda, Good to hear about your surgery. Sorry for the complications but it sounds like you are on the road to recovery. Let us know how you are getting on. Some of us worry! Stay the course. Tom
  24. Jeffrey, Ask as soon as possible for the VA Hospital Patient Advocate to consult with you in your room. Your ward nurse has the contact points. Tell the ward nurse you'd like to consult with the advocate before preparing for discharge. Tell the advocate about the lack of someone to care for you at home and ask the advocate arrange no cost home health care or a longer recovery stay in the hospital. Do this quickly before the system processes you for discharge. Stay the course. Tom
  25. Jeffrey, Recovery from thoracic surgery is a process. In a non-medical characterization, it starts with chest tube or tubes removal. So, you are on the way. Expect coughing and expect pain but it should improve every day. Breathing treatments help because they ease the congestion. The doc needs to ensure your lungs don't get clogged, thus the breathing treatments. Today, you'll likely meet the spirometer - a device that you'll blow into to to keep a ball elevated as long as possible. Likely, you'll be coached to performing this exercise many times per day. It will be uncomfortable but is necessary to hasten your recovery. Glad the VA system is taking care of you. It validates most of what I know about VA medicine. That is, the problem is getting into the system. Once in the system, the VA operates like every other hospital. Stay the course. Tom