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Tom Galli

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Posts posted by Tom Galli

  1. GBJ,

    In the US, medical oncologists are getting aggressive using precision radiation (SBRT, IMRT, IGRT, SABR) to treat with curative intent multifocal disease. I'd consult with a radiation oncologist to see if "spot welding" your mets is possible.

    Stay the course.

    Tom

  2. @Lmodge --  When I read your post, I considered whether to take it down. Our Forum is a safe space for lung cancer survivors and those who care for them. Obviously, we disallow all commercial enterprises advertising this and that. We also frown on people using our survivors and caregivers as survey fodder. Your post sneaked into the allowed category because you didn't link to a particular study or cite an email or contact method.

    But Karen and RJN's critiques highlight my concern. Journalism today unfortunately arrives with a pre-established bias. Yours is a time certain for treating with immunotherapy. Our collective response is there is no time certain for starting or completing any specific therapy. There are guidelines and therapy decisions are best left to patients and their doctors period, full stop. We have too many on the sidelines trying to dictate what treatments we should have and for how long. We certainly don't want to give ammunition to insurance or government bureaucrats that affect OUR lives!

    My disease has largely been ignored by society for almost 20 years of survivorship tenure. Now lung cancer has become a "thing" because most immunotherapy research started on lung cancer. It is the only form of therapy that is effective against all types of lung cancer (small cell, large cell, non small cell). We'd like to keep it that way.

    Stay the course.

    Tom

  3. I am very saddened by the difficulty we have these days in discerning science from politics. In science, there are no absolutes. Nothing is settled. Ever! Period! We learn from postulating hypotheses and subjecting hypotheses to tests and investigations (called experiments) to prove or disprove the hypothesis. Proving does not establish an absolute truth and does not stop the scientific process. Proving yields a theory, but a theory is not an absolute fact. All theories are subject to further scientific exploration. 

    Anyone who tries to convince you that science is settled is a politician. And political science is an oxymoron! Even worse than oxymoronic politicians are broadcast journalists who are just plain dumb!

    Stay the course.

    Tom

  4. This is interesting that this topic was recently refreshed.

    We are entering a new COVID season, complicated by the emergence of RSV (Respiratory Syncytial Virus) and of course the flu. I will get all the shots and boosters. I'm also seeing masking and social distancing as topics of discussion on social media. Yes, I lost about 2 years of social engagement by isolating myself during the pandemic but I am alive. I am planning to isolate again as my strategy for avoiding infection because of my very marginal pulmonary capacity.

    I can only control what I do and self-isolation is inconvenient and boring but I am alive to be inconvenienced!

    Stay the course.

    Tom

  5. Mary Ann,

    Welcome here!

    We completely understand how you feel about recurrence uncertainty. I had 5 recurrences in my treatment days, each an assault on body and spirit. Yes, ground glass opacities can change but they can also stay the same. In nearly 20 years of survival, my yearly scan reports small nodules with ground glass opacities!

    How did I cope with recurrence uncertainty? I learned how to live in the day without dwelling on the past or anticipating the future. When I wake I have my day to plan, organize, and live. I can cope with a day. My future will bring what it brings and worrying about it won't improve circumstances or outcomes.

    Stay the course.

    Tom

  6. Lisa,

    Sorry, I missed your post. We share a diagnosis and treatment plan. My first line (first treatment) was chemoradiation with Taxol and Carboplatin infused every week and daily radiation. This treatment lasted 6 weeks (Monday-Friday) and it worked. That was nearly 20 years ago!

    There are newer conventional drugs these days, but the old reliable Taxol and Carboplatin are best at dealing with solid tumors and that is why they are used. They do come with side effects, however. Mine are a neuropathy that causes a painful burning sensation in the toes (called Taxol toes) and a loss of feeling in my fingertips and ringing in my ears. But my first treatment plan was used to allow surgical resection of my tumor and it worked! I've been hanging around here for a long time and these are some of my lessons learned on infused chemotherapy: "I've Got Veins, Maybe"; "Insomnia and Lung Cancer"; and "Reflections on Infusion". Your most important takeaway is chemoradiation with these drugs can work. Most importantly, following up with Immunotherapy often is very, very effective. I know many on this Forum who've had first line chemoradiation followed up with Immunotherapy and after 2 years on Immunotherapy, they have no evidence of disease (NED) and no longer require any treatment!

    So there is a vast amount of hope today for lung cancer treatment. 

    Stay the course.

    Tom

  7. Johnny,

    Rikkie's suggestions are good, especially about what caused your lung cancer and survival statistics. All that matters now is how to treat it.

    Your genetic testing will reveal if your cancer can be treated with Targeted Therapy or Immunotherapy. The former only works with a small percentage of those with adenocarcinoma. Immunotherapy can work with all forms of lung cancer and I know folks who take it with MS. So let us know what the biomarker testing reveals.

    I have too much experience with pain and I try and avoid opioids also. My avoidance challenge is sleeping. My doc prescribed Xanax to be taken about 30 minutes before bedtime. It relaxes me enough to allow sleep, sometimes. When my post-treatment symptoms combine to elevate my pain level to intolerable, I use Tramadol. It is easier for me than other pain meds, and I concurrently use laxatives to avoid constipation.

    Stay the course.

    Tom

  8. Mscott,

    Welcome!

    We share two experiences: Vietnam and lung cancer. Fighting small cell lung cancer is like finding Charlie in a Vietnam village. He's hard to find and harder to fight. But immunotherapy is a new godsend and so many have benefited from this new therapy. I hope you are included in that population.

    Stay the course.

    Tom

  9. Sarah,

    Many are in the boat. My first-line therapy was designed to shrink a large tumor to allow resection of my right lung. It did but then surgical problems and post-surgical problems nearly killed me. What finally worked was precision radiation; my treatment was SBRT.

    You may want to arrange a consultation with a radiation oncologist to see if radiation can produce surgical results without surgical risk. Established anesthesia issues are a big hurdle that is best avoided.

    Stay the course.

    Tom

  10. Julie,

    Welcome aboard! I was diagnosed at 53 in 2004 and spent nearly 4 years in near-constant treatment. I also had 5 recurrences after curative treatments (!) and accordingly, completely understand what you are going through. I'm not unique. Most lung cancer survivors experience a recurrence. Our disease is so deadly because it frequently recurrs. Hopefully, Tagrisso takes hold and brings you to no evidence of disease (NED).

    Stay the course.

    Tom

  11. Elki,

    How does one stay positive with Stage IV lung cancer? Almost 20 years ago, I faced your dilemma: few treatment opportunities and vast uncertainty about outcomes. An ironic viewing of the film Shawshank Redemption taught me the meaning of hope. Further musings on hope yielded a spiritual understanding (note I wrote spiritual, not religious). I  believe faith and hope are tandem precepts: one must have faith before hope develops.

    On potential treatments, RJN's idea is a good one. Do ask about radiation, especially precision radiation. The different types of precision radiation are all 4-letter abbreviations like SBRT, SABR, IGRT or IMRT. Here is a link explaining how radiation treats lung cancer. When I was down to my last straw, precision radiation was the treatment that led to my cure. I went from certain death to near normal life after three, painless 15-minute treatments. In the US, radiation oncologists are getting very aggressive in treating multi-focal (multiple tumors) disease with precison radiation. I do hope UK your National Health System has a similar view.

    Stay the course.

    Tom

  12. GBJ,

    I'm not a physician but pseudo-progression and immunotherapy seem to be a common condition. Many who have a PET scan after immunotherapy report slight increases in tumor size and minimal SUVs (SUV=standard uptake value; say <5). 

    Let's hope it is pseudo-progression and it is gone in the next scan.

    Stay the course.

    Tom

  13. KenHorse,

    Thoracic fluid dynamics! I studied engineering fluid dynamics but the medical variety is way beyond my knowledge base. I have no idea if the two effusions are connected!

    I just wish they'd go away!

    Stay the course.

    Tom

  14. TGIF,

    Oh my, I hope others are not having difficulty getting Alimta! Paying for it (and for all new medications) is always another matter. I believe your information about Medicare pricing is correct. Medicare is insurance. It is a very large program and is often a market maker price-wise but you are correct. There is no requirement for private insurance plans to adopt Medicare pricing. 

    I'm glad your clinic found another affordable source.

    Stay the course.

    Tom

  15. Anna,

    Scary indeed! Nodules are more common these days because our scanning technology has vastly improved. CT scans find everything and a speculated nodule is of concern. But, one of the best US hospitals (The Cleveland Clinic) publishes a resource that explains pulmonary nodules including reasons for formation and most thankfully are not the result of lung cancer. You can read it here.

    I'm not acquainted with Australia's national health system so I'm not sure how the system will react to this find. Moreover, I am not a physician so keep that in mind as I suggest a path ahead. You state the largest is 1.6 but don't report if it is 1.6 centimeters or millimeters. In the US, a 1.6 cm nodule would be addressed by a follow-up CT scan in perhaps 3 or 4 months. Why? Your husband is young and the scan didn't find a tumor. (The difference between a nodule and a tumor is size. Here is more information about tumors from the Cleveland Clinic.) 

    The follow-up CT is looking for growth. If one or more of the nodules grow to the size of a tumor, then the next step (again in the US, Australia's protocol might be different) would be to obtain a tissue biopsy. This could be done surgically, or using a bronchoscope, or a guided needle technique. The cells would be examined by a pathologist under a microscope (called a histology examination) and malignancy would be determined.

    Let's hope your husband's nodules are the noncancerous type. 

    Stay the course.

    Tom

  16. Welcome Johnny,

    You've already received cogent advice about treatment and family involvement from some of our very knowledgeable members. At this junction, my only suggestion is if I can live, so can you!

    Stay the course.

    Tom

  17. Mike,

    Welcome. Thankfully, lung cancer treatment has vastly improved since my diagnosis in 2004. I note you had a clinical trial as your first-line therapy. Perhaps a different form of immunotherapy is available. Also, I suggest you broker a consultation with a radiation oncologist about precision radiation to address the metastasis in your adrenals. Radiation oncologists are getting very aggressive treating multifocal tumors.

    Let us know how your consultation goes and...

    Stay the course.

    Tom

  18. RJN,

    Adjuvant radiotherapy works! And, I'm a fan. If it is precision radiation (commonly known by 4-letter abbreviations like SBRT, IGRT, or IMRT), treatment will be a piece of cake, a walk in the park, or perhaps easy-peasy! (Not sure which British phrase means no pain, no strain). I doubt it would be fractional general radiation because it must be administered to 2 separate areas of your body. But, perhaps British medicine has adopted fractional general radiation for that purpose. This form of radiation involves daily treatments for say 6 weeks (M-F). Each day produces a fraction of the total dose. The first 3 weeks are no problem, but fatigue can set in during the last 3 weeks and becomes progressively more pronounced.

    If the object is to kill cancer cells, then radiation is your tool. If it hits the cell, it kills it and I like sure kill therapy when it comes to dispatching cancer cells.

    Stay the course.

    Tom

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