Tom Galli

My pain stems from intense muscle cramps: hands, feet, legs, and abdomen. The cramping is very painful and I lose the ability to move the affected area. I take 1000mg of Magnesium daily as a supplement (500mg AM & 500mg PM) prescribed by my medical oncologist. This results from a side effect of my chemotherapy (Taxol and Carboplatin).

This is a long shot but ask her physicians to check her blood salt (magnesium, sodium etc) levels. I had (have) much the same symptoms and my cause is very low magnesium. Stay the course. Tom

KenHorse, Good to know things went well. Glad you are home all patched up. Stay the course. Tom

Wendybird, Welcome here. To your questions, do EGFR mutations have a higher risk of recurrence? I wouldn't know for certain, but I've not read anything on adenocarcinoma mutations and risk of recurrence. All types of lung cancer have a high risk of recurrence compared to other forms of cancer. That is one reason our disease is so deadly. A 4-month scan interval is common for early-stage disease treated with surgery. The objective of frequent scans is to catch a recurrence early. I've not read anything about genetic types and post-treatment scanning frequency. Do all recurrences automatically classify as Stage IV? Staging is an abbreviated way of explaining the extent of the disease at diagnosis. After diagnosis, we worry about recurrence, not one's stage after recurrence. Lung cancer staging is an important consideration at initial diagnosis. It points to the possibility of surgery as a treatment method. Multifocal disease (multiple tumors throughout the body) is generally not treated with surgery. The reason is the disease is already metastasizing and surgery won't stop metastatic activity. This requires systemic treatment: chemotherapy, and or chemotherapy and radiation (chemoradiation). Generally, lung cancer staging at I, II, or IIIA is evaluated for surgical treatment. There are exceptions. Moreover, precision radiation (3D-CRT, IMRT and SBRT) is used, now more commonly, to treat multifocal (many tumors or nodules) disease alone or more typically as a combination therapy (chemoradiation) for late-stage (IIIB or IV) lung cancer. It is also used to treat single nodule or tumor recurrences and sometimes multifocal recurrent nodules or tumors. Recurrence is a nightmare but we have effective ways of dealing with them now. The key is to catch recurrence early, hence frequent scans. Your mom will likely have 4-month scans for say 2 years, then the interval might be moved to twice a year. As a nearly 20-year survivor, I still get an annual scan. My doctor told me I'd have them for the rest of my life. Your much more difficult questions are about hope and fear. I have opinions on these topics, and you can read my views here, here, here, and here. There is a long version on Amazon if you have the inclination. Stay the course. Tom

How about that! Karen got a clean scan. La Dolce Vida! Stay the course. Tom

Lonnie, Welcome here. We understand how your feel. We are all afraid. But my bottom line up front message is if I can live, so can you. Here and here are sumations of my diagnosed Stage IIIB treatment journey. The former is brief while the latter has all the details. I'm nearing 20 years of life after diagnosis and after treatments that nearly did me in. So keep you can live idea cemented forefront in your mind. One of the most important diagnostic tests is a laboratory analysis of your tissue biopsy to determine suitability for Targeted Therapy and or Immunotherapy. These systemic treatment methods are game changers in lung cancer survival. I mention this testing because sometimes it is not performed. You should insist that it is. You may be a surgical candidate and surgery is our most effective curative method, but lung cancer is so very dangerous because it frequently recurs after curative treatment. One way to get ahead of recurrence is post-surgical chemotherapy. It is commonly performed after Stage II and III diagnosis but some I know did not have the post-surgical chemo and suffered a recurrence. You don't want to go down that path. If you have surgery, then avail yourself of the post-surgical chemo. It is inconvenient but recurrence is a nightmare! Many effective treatments are now available to counter our beast. Multifocal precision radiation (treating 2 or more tumors in distant parts of the body) is now commonplace. I mention precision radiation becuase that is the treatment that led me to NED -- no evidence of disease. Once our world used cure to describe a good outcome but recurrence is so common that we've reset our language to accommodate reality. You might check out blogs on our Forum for information and inspiration. I started writing about lung cancer on the suggestion of a therapist who treated me for depression associated with my treatment mayhem. He said it is useful to read what your thought or felt months ago to help understand what is happening now. I agree. Writing what you feel about uncertainty and fear gives you power over those feelings. Put the words down on paper. Here is an assemblage of my blogs over the years. You've found your support group. There are many online resources for lung cancer these days including social media sites. But this is a safe space. It is now your safe space. We know how you feel. You fit right in. Stay the course. Tom

KenHorse, I do hope you are moving toward a resolution. This symptom and draining is a nightmare. I've got all my digits crossed. Stay the course. Tom

We know what you are going through. I wish I had a magic wand. Stay the course. Tom

Welcome Amy. Stay the course. Tom

BBTN, Continuing shortness of breath now 14 days after surgery but high O2 saturation and improvement with albuterol, I think it is a little early for symptoms to resolve. You might add a pulmonologist to your team for a more detailed appraisal. I'd report this symptom to your doctors and keep using albuterol, the nebulizer, and walking as much as possible. Stay the course. Tom

PK2, Welcome here. Sorry, I missed your first post. I don't have knowledge about cavitary versus noncavitary lesion outcomes. In fact, I had to do a little reading to determine what a cavitary lesion was. Here is what I found. I'm not a physician so I can't offer you a definitive opinion but the cavitary nomenclature describes the shape or appearance of the lesion. I don't believe lesion shape or appearance in a scan affects outcomes. Although you don't mention it, you likely had a biopsy of the lesion because you report adenocarcinoma, and it would be my guess that your disease will be treated like adenocarcinoma regardless of how it looks in a scan. So assuming the PET and MRI scans do not show any involvement, you may be considered an early find (Stage I or II) and a surgical or precision radiation candidate. Here is some information on lung cancer staging. Susan makes a persuasive case. I'll add my evidence to hers. I was diagnosed with late-stage lung cancer nearly 20 years ago and I'm still here. We are all hoping for good news about your PET and MRI. Please let us know about those outcomes. Stay the course. Tom

Sophia, You should contact your surgeon's practice to have biomarker testing performed. Here is information on biomarker testing. The pathologist that performed the diagnosing histology is required to keep your tumor material sample for an extended period of time. Because your stage was IB, you may need to pay out of pocket for this additional testing but the cost is well worth the knowledge gained. I'm not a fan of alternative treatments or therapy. Many claims are advertised, but no valid statistics justify the claims. I've been associated with this Forum since 2015. Before that, I had 6 years of involvement with an online lung cancer support group. In all that time, everyone who "invested" in alternate therapies paid a small fortune to die at an accelerated pace. You mention hyperbaric oxygen. I was offered an "opportunity" to participate in a clinical trial involving chemotherapy in a hyperbaric pressurized oxygen chamber. I didn't choose this trial and found out later the trial was halted early because every participant progressed during treatment. When I was diagnosed in 2005, cancer sure-cure remedies were widely advertised on the Internet. Here , here, and here are examples. The best way to ward off a recurrence of lung cancer is to abide by your screening scan schedule. If you get biomarker testing complete, you'll have another advantage. You'll know ahead of time what targeted therapy or immunotherapy agent will work best against your type of lung cancer. Moreover, radiation oncologists have precision radiation techniques to "sure kill" any type of lung cancer tumor when found early. That is why screening is so important. Finding a recurrence early gives you valid and effective options to deal with it. Stay the course. Tom

BBTN, I'm relieved you got through surgery. I had all the symptoms you reported after my lung was removed. The crepitation or crackling sound made while breathing was unnerving but it resolved before I was discharged. Use the spirometer and it will accelerate its departure. Similarly, the small pneumothorax and emphysema symptoms were those I experience and my surgeon explained these are related to surgical-caused inflammation. Tips and tricks: keep using the spirometer and walk as much as you can, pushing yourself a little farther each day. Now for your oncology visit--lung cancer is so very dangerous because of the frequency of recurrence after curative treatment. You've just had the most effective curative treatment. If you are offered chemotherapy, I advise you to take it. The big danger now is cancer cells might be circulating in your blood and lymphatic systems and post-surgical chemo takes them out. Good to hear from you again. Stay the course. Tom

Kim, MD Anderson is a solid cancer hospital. I'm sure you'll be well taken care of after precision radiation zaps that troubling bone met. Stay the course. Tom

Jenny, Welcome here. Progression after Targeted Therapy is a major pain. Am I correct in assuming your husband has adenocarcinoma with EGFR exon 19 deletions or exon 21 (L858R) substitution mutations? In the US, Osimertinib (Tagrisso) is used for first-line therapy with Stage IV diagnosis. I don't have actual experience with Tagrisso because my diagnosis was squamous cell and Targeted Therapies have not been developed for this form of lung cancer. Let's call for the wisdom of the Forum. Can anyone provide experience with progression after Tagrisso? Hang in there Jenny and stay the course. Tom

KenHorse, When it rains it pours buckets, especially in Oregon! A scheduled chyle drain is a good approach. Stay the course. Tom

Bridget, Oh my! I do hope your kitty gets better quickly. Stay the course. Tom

Kim, So very sorry to learn of your diagnosis! Welcome here. As I understand it, you had an MRI in the diagnostic phase. That conforms with diagnostic protocol as I understand it. Fortunately, Tagrisso passes the blood-brain barrier. So If anything settles in your brain during treatment, the medication ought to control it. Tagresso is very effective for adenocarcinoma EGFR Exon 21 disease, and I pray for your good results. I had a brain scan during diagnosis to clear involvement before I started treatment. I had an MRI about 5 years after diagnosis and then another 5 years later. So in my treatment experience, MRIs were not used frequently as a screening method. I think a CT scan is quite capable of detecting new bone mets. But, let's hope nothing new happens and Tagresso does its thing. Here is more information on imaging used in lung cancer detection and screening. Stay the course. Tom

Jacob, I can definitely say your struggle to get physicians to pay attention to your mom's disease is definitely not normal. Please call Kristi Griffith at (214) 726-2112. Kristi is a Registered Nurse who works for the LUNGevity Foundation. Tell her I asked you to call her and see if she can move your mom's medical system. Stay the course. Tom

Jeff, I know how important hair is and therefore note your mom's concern but my hair grew back each time after 3 Taxol and Carboplatin infusion cycles. Good news on the practical idea of removing her IV in between treatments. That would have driven me nuts. Let's hope the mid-treatment scan shows good results. Stay the course. Tom

Bridget, You and your family and friends remain in my prayers. Stay the course. Tom

J What is daily life like for me? To be precise, that answer should address two different periods: life after NED (no evidence of disease) from 2007 to COVID in 2019 and life after COVID because they are vastly different. Now, age is intersecting marginal pulmonary capacity. When treatment ended in 2007, my wife and I embarked on an aggressive vacation experience. We both enjoy cruising and took a total of 7 transatlantic cruises to Europe, a Baltic Sea cruise, and a Mediterranean Sea cruise. Each had a substantial (at least 2 weeks) self-guided tour starting at the European port of arrival. We did Italy twice, Spain and Portugal, Ireland twice, England and Scotland, and the Baltic Sea Nations. My 3 thoracic surgeries caused significant chronic pain. On the first return transatlantic flight, I discovered airline cabin pressure had the effect of expanding my chest and I spent 9 hours in agony. But, we found Iceland and booked return air from European cities to spend a day or so in Iceland exploring before continuing home. This broke "up in the air" time into manageable painful periods. My physician introduced me to Lidocaine transdermal patches that when applied shortly before the flight would tamp down incision pain. Walking around during these trips on level ground was easy. Climbing the "million" stairs to Edinburgh Castle or negotiating the elevation changes along the pathway to the Cliffs of Moher was difficult but I took my time. When COVID hit, I confined myself to quarters. The last thing I wanted was a dangerous pulmonary virus. I walked my neighborhood but avoided neighbors and air travel, even masked and after all the vaccinations and boosters. I turned 70 with COVID's onset, and age now adversely intersects pulmonary capacity. Now, I'd likely not attempt to climb 3 flights of stairs let alone the steps to Edinburgh Castle. My daily life now is restricted to about a mile of walking around on level ground. We tried air travel twice and caught a respiratory bug (not COVID) each time and had a 10-day Caribbean cruise. I enjoyed 5 days before catching a shipboard malady, again not COVID. So COVID isolation has likely weakened my immune system to whatever is circulating throughout the population. When I catch a chest cold now, it puts me down for at least 3 weeks. Long periods of breathing in an N95 mask are extremely difficult. My traveling days are likely over. You can private message me. Use the Forum private message function. But, our purpose is to provide open-source information on treatment and recovery and therefore encourage you to keep our dialogue in the open so others in the future can benefit from the information exchange. I learned in years of online message board discussions that cancer survivors seem to have the same questions. Stay the course. Tom

J I'm a survivor with 1 lung. Actually, less than 1 because of tumors that bloomed in my left lung after surgery do not support respiration. I'm nearing 20 years of life with significantly impaired respiration capacity, perhaps 30% of normal lung capacity. I don't live a 30% life, however! I note your fitness routine. After surgery, there can be fitness in your life. You will need to find your stride but many of us do. One survivor on this forum, @Roz, is a self-described "gym rat". She's had 2 lobes removed and has active disease throughout her remaining lung tissue, yet she shows up and works out. Welcome here. We don't have insight or information on thymoma but life after thoracic surgery is well within our scope. Stay the course. Tom

Smfj, I'd press for a chest CT. It could be nothing but chronic sinusitis but the extent of the symptom is concerning. Stay the course. Tom

Ken, Negative for malignancy is the best of good news! Stay the course. Tom