Tom Galli

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

@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

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

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

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

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

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

Jvizgart, Do you have the results of your scan? Stay the course. Tom

Great news Ken! Stay the course. Tom

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

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

Bridget, Happy birthday and stay the course! Tom

Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today. No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying. In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always... Stay the course. Tom

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

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

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

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

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

Welcome aboard Ellebee! I was diagnosed nearly 20 years ago, well before the many advances in lung cancer treatment. Tagrisso is a very effective medication for dealing with adenocarcinoma with an EGFR biomarker. If I can live, so can you! Stay the course. Tom

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

KenHorse, Wonderful! Stay the course. Tom

I understand miserable. Any kind of chemotherapy is challenging and you are having combination chemotherapy (Cisplatin and Etoposide) plus Immunotherapy (Durvalumab). This is an emerging standard of care for Small Cell Lung Cancer (SCLC). Your fractional radiation (30 daily treatments) should not add to your chemo side effect burden, but you will experience fatigue and it could be extreme fatigue starting in week 4. Radiation is very important because it is the tumor-killing component of treatment. My chemotherapy (Taxol and Carboplatin) affected my Calcium and Magnesium blood levels also. My medical oncologist suggested I take oral supplements for both of these minerals. I continue taking Magnesium to this day. I'd ask your medical oncologist about oral supplements for these important minerals. I'm not sure I would ask for lower concentrations of chemo. SCLC is so dangerous because it often recurs and the conventional drugs sweep the blood and lymphatic systems of cancer cells. Immunotherapy trains your immune system to recognize cellular lung cancer and destroy it before it can form a tumor. You want to ensure every single cell is eliminated. Our gold standard for successful treatment is the attainment of no evidence of disease (NED). Here is an explanation of various terms used to describe treatment effects. I hope your chemo-radiation results in a NED scan and I hope you surf the NED zone for a very long time. Combination chemotherapy is dramatically changing outcomes for SCLC. Stay the course. Tom

Matthew, Likely your dad's GP will order a Complete Blood Count (CBC) as an element of blood work. I'd ensure the results are explained to your parents. Here is information from the Cleveland Clinic, a noted medical center in the US on the CBC test. Stay the course. Tom

Matthew, Here are my thoughts on symptoms. The CT showing enlarged lymph nodes is concerning. Many things can cause enlarged lymph nodes including any kind of infection. But enlarged lymph nodes do not match up with shortness of breath. If there were tumors in the lung (easily shown by CT), that could be an explanation for shortness of breath. Many things can cause a change in speech. If vocal cords are swollen then that might explain breathing difficulty. Did the CT scan cover the neck? Ensure the PET scan covers the neck. Night sweats can be symptomatic of respiration inefficiency caused by many things, including lung cancer. But again, I would assume the CT would show substantial tumors in the lung. Your father's symptoms may point to a respiratory infection. Did the blood test show elevated white blood cell counts? Thus, the PET scan is a good choice. I wouldn't worry about the 2-week delay. I would worry about a 2-month delay. Ensure the PET scan covers the throat. Stay the course. Tom

Oh my. When it rains, it pours. Let's hope for a dry spell! Stay the course. Tom