Jump to content

Tom Galli

  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by Tom Galli

  1. Brand New

    Jeffrey, That's not good! So they are hospitalizing you because of the current atelectasis and potential irritation of radiation and chemo, is that correct? Do let me know what the PET reveals. I hope it is just an aberration.... Stay the course. Tom
  2. numb and painful chestwall

    Karin, I'm not sure I have a good answer about numbness. I had an extensive incision when my right lung was removed and because of surgical complications and the need to address a fistula, I had two follow-up procedures that used the same incision point. So I have chronic pain but not numbness. Was your lung removed? When my incision pain soars, my wife applies lidocaine patches. These are available by prescription and they are a medical miracle for me. Using them some times allows me to avoid taking pain meds. I also soak in the pool and the buoyant effect reduces the tug of gravity on my chest and thus helps relieve pain. But, not numbness, in fact, I've never felt numbness in my incision area. Are you consulting with a medical oncologist and are you having regular scans to check for recurrence. A scan would address the scare of recurrence. So, I advise following up with your doctor and getting a script for lidocaine patches if it is pain you are feeling. If numbness, I don't have a clue. Stay the course. Tom
  3. Father, 59, going through NSCLC diagnosis.

    Marcia, Was the infusion for his bones called Zometa? It is typically used when mets are discovered in bone. Bone pain with cancer is a pretty common complaint and palliative radiation is most often used to relieve pain. You might inquire why not radiation. And, as you suspect, the pain could be the immunotherapy reaction, we hope. Stay the course. Tom
  4. 75 year old mom with Stage IV nsclc

    MalTay, My bottom line answer -- second opinion. I'd get a second medical oncologist involved. Now I'm not a doctor and Keytruda is showing impressive results but immunotherapy is a relatively new treatment modality for cancer in general and lung cancer in particular. There could indeed be some reasons why her current doctor is reluctant to start a Keytruda routine, but my doctor would have to explain the reasons, in detail. I'd expect a complete explanation of what potential side-effects were of concern and why. A tumor board should not need to be consulted to explain side-effects. So I'd be shopping for a different medical oncologist. I'm also wondering why Neulasta and Procrit were not administered to address low red and white counts. This is a very typical side-effect for most conventional chemotherapy and the administration of these two drugs is nearly universal about 3 days after infusion. I had in total 18 infusions of Taxol and Carboplatin and for about half, I received injections of Neulasta and Procrit to kick start red and white cell production. Chemo does beat one up but it also beats up tumors. Something is not adding up with her blood count problem. The only good thing about chemo side effects, my experience, is then tend to repeat in the same order and intensity after each infusion. Yet, your mother did not experience low counts till after her fourth. I had low counts after each infusion and sometimes, they were low enough to warrant injection of the aforementioned drugs. So, something else may be going on with her marrow. If it were me, I'd be consulting with another medical oncologist. Stay the course. Tom
  5. Brand New

    Jeffrey, Stage 3A NSCLC? I recall there was a question about the type. Is it NSCLC and if so Adenocarcinoma or Squamous cell? I am confused about your post surgical treatment description. Will you be hospitalized? Are you to receive 6 weeks of radiation and 4 weeks of chemo, once per week? The radiation sounds odd post surgery. Did he give a reason? Stay the course. Tom
  6. I join Bridget with a welcome. Your description of your mother's problems is the most complex immunotherapy side-effect I've ever read. I hope doctors are able to stop further deterioration and restore her organ function. That said, I wouldn't know where to begin to suggest a remedy. I am messaging LUNGevity staff to make them aware of your post and see if we can connect you with Opdivo expertise. Stay the course. Tom
  7. So much so fast...

    YES - YES - YES - YES and once more with gusto! YES! Stay the course Susan! Tom
  8. Pet scan shows it's back

    Daughter, I would say the objective of second-line treatment is to achieve a reduction or elimination of tumor or tumors. You are correct, there will likely be an in-process scan about midway through and then decisions on continuing or changing therapy. Your dad will need his family to close ranks around him. Lung cancer treatment is not easy, especially the daily treatment like your dad will endure. My view, past relationships are immaterial. I would not have made it through my treatment without my wife and daughter. Their contribution was immeasurable. I am quite sure your dad will appreciate your engagement. By all means, pick our brains. Stay the course. Tom
  9. Pet scan shows it's back

    Daughter, I am so very sorry to hear of your dad's recurrence. That is what it is called when cancer returns -- a recurrence. And unfortunately, recurrence with lung cancer is common. I have non small cell squamous cell lung cancer and experienced four recurrences after treatment that showed me to exhibit no evidence of disease or NED. Because lung cancer and in fact all cancer for that matter recurs so frequently, the treatment community has moved away from the word cure. Remission is still used but the definition has narrowed to cancer that stops growing either as a result of treatment or not. Here is a good summary of lung cancer that will acquaint you with basic terms. What is the recurrence timeframe? Mine were 6 to 8 months after last treatment. It is not unusual that the duration is shorter or longer. Everyone's cancer is somewhat different. How effective will his second line treatment be? The Lord only knows. Cancer is a disease of one's genes. Everyone's genetic structure is different thus on reason for the variability in treatment outcomes. But, chemotherapy kept me alive for 2 years till a new treatment emerged from research to cause me to achieve NED. In fact, I've lived nearly 14 years after diagnosis and many in fact on this site are long term survivors of lung cancer. Those with small cell lung cancer are following emerging research in targeted therapy and immunotherapy. These new methods are promising advances for small cell treatment. Read about these here at the Clinical Research Study down arrow. You may point your dad to this site as a place where he can understand and ask questions about his treatment and interact with survivors. Questions? This would be the place for those. Stay the course. Tom
  10. New to this

    Sandra, WONDERFUL! Stay the course. Tom
  11. Tim, What to expect with a pleural effusion? As you said, drained and the fluid will be examined by a pathologist for signs of cancer. The radiologist reported a mild uptake in the effusion area and has expressed concern about malignancy. Perhaps but I've had many PET scans with reported "mild uptake" that turned out to be something other than cancer. I would think it unusual to have a significant reduction in masses from radiation and adjunct chemo while developing a new metastasis in the pleural area. The radiation had to have been concentrated in the right lung area. So, we wait again for a path report. He'll likely have Second Line treatment consisting of chemotherapy only. The PET showed a significant reduction, not elimination. But overall, the PET is a good report. Stay the course. Tom
  12. No cancer, but I have bronchiectasis..

    Bee, Welcome here. I am one of the several with a military background. Bronchiectasis is nasty. It is normally associated with cystic fibrosis and or an autoimmune disease. I know because I spent about a month in an Army hospital as a young officer with symptoms. In my case, it turned out to be a nasty virus but obviously yours is different. While I understand your situation, I can't understand how the armed service could retain you on active duty. While you report your superb fitness state, loss of portion of a lung normally results in medical retirement because you've become "non-deployable". Are you being processed for military medical retirement? Military medicine is outstanding in battlefield trauma (as one may suspect) but mediocre at almost everything else. And, I understand how your hands are tied. I suspect you'll have a medical retirement board proceeding and will receive both a military retirement and veterans disability retirement along with life-long VA medical care. I live near Dallas and find the VA hospital here provides excellent care. The only problem with VA medicine is the bureaucratic shuffle getting into the system. You'll be in the system from the start. In my active duty time, we did a 5 mile run on MWF and 10 miles on Tuesday and Thursday and that routine may be too much for your condition. I'm not a physician so don't take my suggestion as medical advice. If it were me, knowing the symptoms of bronchiectasis (I do) and the irritation that excessive physical fitness activities can cause the lungs (I do), I'd be very careful with your fitness routine. Keeping fit is fine; training for half marathons is likely not. So I'd focus on fitness activities that do not overly stress lung function like weight lifting and static strength exercise. Stay the course. Tom
  13. Finding hope in my mom's cancer journey

    Steff, Three removals were day surgery: morning procedure, afternoon discharge. There were complications on the last removal that earned me an overnight stay. I think the complication was a reaction to anesthesia. I hope your mom is feeling better. Stay the course. Tom
  14. Finding hope in my mom's cancer journey

    Well Steff, great news and I'm so happy to hear your mother is doing well. Trachea stents and mucus build up is a real problem. I had four placed and removed at various times in my treatment history. I used Mucinex and although it is supposed to be for lung congestion, it worked well to break up the mucus that the stent captured. Of course, I had a Combivent inhaler and that also helped. Have fun at the Buffett concert! Stay the course. Tom
  15. 6 mm growing lung nodule in Right Upper Lung Lobe

    Swapon, Again, I'm not a doctor, so I can't begin to give you advice. The problem is a very small nodule. Six millimeters is a little larger than an eraser on a pencile. A biopsy is the only way I know to confirm the nodule is cancer. At this small size, a doctor will be reluctant to order a biopsy. The most common way to biopsy lung nodules is with a needle and a nodule this small is hard to hit. Even if it is, the sample may not be good enough to examine. And, without a biopsy a medical oncologist will not be able to treat you. A PET scan can, with larger tumors, indicate cancer but is not reliable on small tumors and it cannot identify a type of cancer. Not knowing the type will make treatment difficult. So you may need to wait till the nodule gets bigger. It could disappear. I hope it does. Stay the course. Tom
  16. 6 mm growing lung nodule in Right Upper Lung Lobe

    Swapon, It is hard for me to answer because I do not know the medical system in India. Pain from small nodules in the lung is an uncommon symptom. Pain even from large nodules in the lung is uncommon. That is why lung cancer is so dangerous. It often presents with no physical symptoms. At age 29 and with no smoking history, it would be improbable to presume lung cancer, but it cannot be ruled out either. True, small nodules are difficult to biopsy and yours are indeed small. There is another scan that is used to assess metastatic disease -- a PET scan. But, it can also have questionable results, particularly with very small tumors. If your medical system requires pulmonology approval before consulting with a medical oncologist, then I suppose you have to wait. I wouldn't wait but I am biased because I've had the disease. I'd press the pulmonologist for an answer to your pain symptom. Sorry I can't be of more help. Stay the course. Tom
  17. 6 mm growing lung nodule in Right Upper Lung Lobe

    Swapon, Welcome here and thank you for the very detailed summary of your medical history. Please keep in mind I am not a doctor so do not consider my opinion as medical advice or guidance. If it were me, the results of the July 24 CT scan would prompt me to consult with a medical oncologist. There are many things that can cause lung nodules that are not cancer but the repeat finding in the upper right lobe and the size increase would be of concern. In any event, have a look around our site and read this material to acquaint yourself with information about lung cancer, should you have it. Stay the course. Tom
  18. Brand New

    Jeffrey, Good to learn you are home and close to family. Could you please help another veteran on this forum with a lung cancer disability issue? Michele is the caregiver of her husband who is being treated by the VA for lung cancer in Florida. Last evening, she posted this question. As I understand it, you when through a disability adjustment when your were diagnosed with lung cancer. Might you engage with Michele and give her the benefit of your experience. You can use the private message function of the site to give her the benefit of your experience if you prefer. Thanks and.... Stay the course. Tom
  19. What's next?? Pls help

    Megha, I'm so very sorry to learn of your mother's affliction. I helplessly watched my mother struggle with life threatening disease as she became elderly. While not cancer, it was disabling and debilitating, and I was heartbroken watching her die. My memory recalled a young vibrant woman but reality was a woman who had life ending cardiopulmonary disease and who was fighting to take a next breath. I have no suggestions for how one stops the death of a loved one. I'm sure you are trying your best to ensure your mother is comfortable. Is she in Hospice care? My mother was enrolled in Hospice and she was vastly more comfortable before she passed. I wish there was something I could do, some help I could offer. Stay the course. Tom
  20. Question? VA

    Michele, No I was not. But, as I understand it, if agent orange caused one medical problem, it likely caused another. I think the State of Florida has county employees at the county courthouse to help one negotiate and file VA disability claims. Make your inquiry through their office. In Texas, we have county employees who even file claims for veteran disability. If Florida does not have assistance at the county level, private message me with your husband's detailed information and I see if I can help point you in the right direction. He is being treated at a VA hospital as I recall, correct? That ought to accelerate the disability claim. One veteran on the side diagnosed with Sage IV lung cancer was automatically granted 100% disability. I'm trying to remember who that is. He is being treated in a Florida VA hospital also. Stay the course. Tom
  21. Finally got pathology report

    Lexie, Good news! No chemo - better news!!! Bridget, Absolutely agree medicine is both an art and science. While First and Second Line treatment may be cookbook (National Standard of Care), Third Line and beyond is dependent on the intuition of the oncologist. So sensing the artistic qualities of an oncologist may be an important thing to do. How it is done is beyond me. I was just lucky to have a medical artist as my oncologist. Ladies - stay the course. Tom
  22. So much so fast...

    Sherry, Welcome here. Breaking down, emotionally numb and lots of information to digest, we understand completely and absolutely. Lung cancer almost always presents as a surprise with nasty looming consequences. It sounds like you have a competent and responsive treatment team from your description and sequence of tests so I'll not dwell on those details. Let's try and refocus. I am indeed fortunate to have survived thirteen and a half years after diagnosis with NSCLC and my treatments (many failures) including: three thoracic surgeries, four tracheal stent procedures, eighteen infusions of taxol and carboplatin and conventional and stereotactic body radiation therapy. I averaged 18 weeks of treatment and 24 weeks of no treatment for almost four years. During the 24 week periods of no evidence of disease (NED) or questionable evidence of disease, I fretted, fussed, and fumed. That was a vast mistake. I should have been living. Your course of treatment will have two objectives: eliminate your cancer and extend your life. At this juncture, both outcomes are possible, no more than possible, probable. Highly probable, given the reading I'm doing on advances in immunotherapy and radiation therapy for small cell lung cancer. So, don't do what I did. Enjoy your life extension. There is so much about lung cancer that you cannot influence or control, but you can decide to not let lung cancer ruin your life. That is well within your power and capability. Here, read this, then re-watch the movie. Then, buy some truck tire inner tubes, inflate, and float the Redstone Creek. I had a blast floating that creek as a college student during a fraternity house swap week in the late 60s. With all the emphasis on cleaning up waterways, it must indeed be a very pleasurable activity these days. I know West Virginia, a couple of driving hours south of you, has wonderful rivers to float. Questions? Of course, this is the place to ask and more than likely, we'll have answers. But your life is your thing, so go make that happen during treatment and after. Stay the course. Tom
  23. My new cancer journey

    Wayne, If I can get through Taxol and Carboplatin, so can you. It is not a walk-in-the-park or walk-about in Aussie speak but it can be done. Your first sensation will be "'roid-rage" from all the side effect moderating steroids they administer before infusion. I had to take 6 pills, 6, 12 and 18 hours before infusion plus the first bag of stuff was a steroid. Hunger after infusions was my first symptom and I ate very well and often at least on infusion day. But, I assume you are having chemo as an adjunct to radiation. Normally, one has daily radiation treatments plus a once-a-week infusion on one of the radiation days. If that is the case, you'll get the less concentrated variety of Taxol and Carboplatin and that might not cause you any side effects at all. It hardly bothered me at all; I didn't even lose my hair. Radiation comes in like a lamb and goes out like a lion. For my first 2 weeks, I didn't even realize I was in treatment. Then I started getting very weak and tired and had skin burns on my chest and a constantly irritated throat complete with dry cough. So I'd venture, radiation during your first line treatment will be the most bothersome. But, it must be done, so.... Stay the course. Tom
  24. Trouble Logging In

    Vivian, Have you installed the LUNGevity Lung Cancer Navigator app available on Apples App store? When I accessed the site through the Safari browser on the phone, I had many log in problems. Now with the app, I have none. Hope this helps. Stay the course. Tom
  25. Surgery 3/27/17 for stage IIb nsclc

    Karen, Sorry about your posting difficulty. No tutorial that I know of but it is a good idea and I'll send it up the chain. Don't worry about where you post (in discussion boards), we'll find you. There is a gray (I'm color blind so anything not black is gray) tab called unread content that most of us check to find the new posts. Indeed, that is how I found yours. Sophisticated, yes in a comprehensive and caring prospective but not high-browsed sophisticated. Any lung cancer survivor or care giver gets automatic entry and attention. All have a tough row to hoe and all are equally valued and important. Take a look at Lung Cancer 101 on the Lungevity.org website. That is the most comprehensive presentation on lung cancer I've seen but is easily understood even by this medical phraseology challenged civil engineer. Stay the course. Tom