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  2. Hi Kathy, I had a stage 1A lung adenocacinoma. I had a lobectomy and no furtther treatment was recommended. However, I previously had a stage 3, rare type of cervical cancer with a "dismal prognosis" (whatever that means). For that one I had concurrent chemo and radiation and then, based on a second opinion, some additional chemo. None of it was pleasant. I had side effects, including some that are permanent. I don't regret my treatment decisions, though, because today, more than 6 years later, I'm ALIVE (yay!) and no evidence of disase (double yay!). Chemo is indeed scary. it's essentially a poison intented to kill off the cancer without killing us. In my case it worked, and I'm grateful. My quality of life if good today, I'm still able to travel (one of my great joys), I walk a lot and I feel well. (BTW, I'm 72) As to alternative medicine, I'm a believer in it as an adjunct to conventional treatment, not as a substitute. During and for a time after my treatments, I had frequent acupuncture , which seemed to me to help with side effects. I also took some supplements and made some dietary changes on the advice of a naturopath. Don't know if it helped with the cancer, but in any event I'm in much better physical shape than I was pre-cancer. We each have to make our own treatment decisions. In my case, It's been to throw everything at the cancer. I wish there was something gentler that worked, but I don't think there is. Keep us posted. Bridget O
  3. Today
  4. How long for scans?

    Hi DC, Before I read Tom's response, I thought you meant that you hadn't got your scan results yet. If that's the case, call your doctor's office. Hang in there! Bridget O
  5. New to Cancer

    Hi Holly, I like your hair loss plan! By all means, try the long earrings with the turbans. I'm 72 and retired. I found it interesting to be bald. If we were younger, we could think of it as a fashion statement. Bridget
  6. xrays

    Hi bes, I'm glad to hear you finally got some information and that your husband has a treatment plan. Hang in there! Let us know what we can do to support you. Bridget O
  7. Heather Hogan's Story

    Thanks Tom.
  8. Heather Hogan's Story

    Kathy, Heather Hogan's story was posted as a blog by one of LUNGevity's forum staff members. She may not read your question. I just responded to your Introduce Yourself post and offered an answer to the questions you posed. Stay the course. Tom
  9. Welcome here Kathy, I've had a total of 18 infusions of Taxol and Carboplatin. Like Susan, each infusion was administered in a three-week cycle. My chief side-effect was joint pain (of course I lost my hair) and it was very difficult to deal with for about 3 days every three weeks. Three bad days every 21 days, but, it worked. After each cycle of six infusions, tumors disappeared. I benefited from significant extensions of life. In the nearly 14 years of surviving a lung cancer diagnosis, I've done an extensive amount of research. I'm also fortunate to have a wife with a masters degree in dietetics and she's done a lot of research. Neither of us could find peer reviewed literature in any respected medical or microbiology journal that suggests diet, juicing, organics-based diet, or GMO has any effect on any cancer, including lung cancer. In fact, we found a lot of mis-information and sales literature aimed at cancer patients because we are such a "insult to injury" lucrative target. Here and here are essays I've written about alternative cancer therapies and nutrition based "cures." There is benefit for improving one's diet, but the benefit does not extend to stopping or killing cancer. I completely understand your analogy about misery before death but in between, for most, comes extended life. One of the real, recognized benefit from chemotherapy is extended life. Many on this forum are in the NED (no evidence of disease) zone because of chemotherapy, alone. Some receive chemotherapy for years because it keeps knocking back tumors and adding to the extended life, thus treating lung cancer as a chronic disease like diabetes. One lady I know well has been receiving Taxol and Carboplatin (one infusion every three weeks) for an 18 week treatment cycle every year for the last 10 years. I really wish there was something better as a treatment alternative. You might read The Emperor of All Maladies by Siddhartha Mukherjee. In this "biography" of cancer, Mukherjee describes the problem of killing cancer, our body cells run amuck, with chemicals as so difficult it is "like finding some agent that will dissolve away the left ear and leave the right ear unharmed." Indeed, that difficulty is precisely why we experience side-effects from chemotherapy -- cancer cells are of our own bodies. I note you are awaiting biopsy results on your adenocarcinoma lung cancer that might show a response to one of the several new targeted therapies emerging from research. If your results indicate suitability for targeted therapy, you might receive a very effective drug that doesn't need to dissolve the left ear and leave the right unharmed to kill cancer. There may be side effects, but their are much improved results. More questions? This is the place. Stay the course. Tom
  10. Immunotherapy and chemo combo

    Nshirley, Immunotherapy (at least some of them) is not cancelled out by chemo, in fact, it can help the immune system get a jumpstart because the chemo will hopefully slow/stop the growth of the cancer, making it more manageable for the immune system to attack. My mom is receiving immunotherapy (Keytruda) and Chemo (Alimta/Carboplatin). She will receive her 5th treatment on Friday. We were told during her treatment planning that earlier in the year, new treatment results had been released about Ketruda alone versus Keytruda/Chemo. The combo raises the effectiveness and overall survival rate. For the combo, my mom's recommendation is 8 sessions of Keytruda/chemo and then proceed with Keytruda alone. She has already had her mid-treatment scan and the tumor on her trachea is shrinking, in fact it has shrunken enough that she was able to have her trachea stent removed a week ago. I don't know how effective combining chemo with other immunotherapies are, but that is my mom's experience with Keytruda. As for the side effects, my mom has done so-so, but she has had other health issues affecting her as well. She had chemo for her initial lung cancer diagnosis 2 years ago, she had the typical symptoms - heart burn, loss of hair, and lack of energy. This time, she has the heart burn, thinning hair (she will not lose it all), and flu-like symptoms for 5-6 days after treatment. Since her tumor is shrinking, we definitely feel that the 6 months of dealing with chemo symptoms are worth it in the long run, but everyone is different. Hope this info helps a bit.
  11. Hi I'm new here

    Hi Diamond, I am sorry to hear about your father. I too, have a mother battling lung cancer - a recurrence of NSCLC. My mom is quite strong, as many mother are, but there are days that I see she is tired. She is also a caregiver for my dad who is disabled due to a movement disorder. I feel your pain, fear, and sadness. I'm not sure if you live in the U.S. but if you do and haven't gotten in contact with a local agency on aging, they can be a big help. My mom works with our local Aging and adult Care office and they have been really helpful for her - providing various supplies and education on what's available to them. She still refuses to get a caregiver for my dad as she still wants to do as much as possible, but knows that the option is there.
  12. My Mum

    All Over the Place: Here are the basic definitions of targeted therapy and Immunotherapy - they are different, but both can be equally effective. I've also included the links to the Lungevity pages that have more information. Targeted cancer therapies are a type of biological therapy that aims to target cancer cells directly. They target certain parts of cells and the signals that cause cancer cells to grow uncontrollably and thrive. These drugs are often grouped by how they work or what part of the cell they target. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy Immunotherapy is considered a type of biological therapy. It aims to enhance the body’s immune response and stop lung cancers from escaping from the immune system. Immunotherapy is a treatment that strengthens the natural ability of the patient’s immune system to fight cancer. Instead of targeting the person’s cancer cells directly, immunotherapy trains a person’s natural immune system to recognize cancer cells and selectively target and kill them. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/immunotherapy I'm not sure that someone would receive both targeted therapy and immunotherapy, but I have heard of people receiving radiation and immunotherapy at the same time. And Keytruda (which is an immunotherapy for those with the PD-L1 mutation) is now recommended to have chemo combined with it during the first 8 or so treatments. The doctor may not be considering radiation at this point because they are considering surgery. For my mom's situation, if they would have been able to remove the final lymph node that was involved, she would have not had any follow up treatments. But be sure to ask why they are choosing this specific treatment plan. If they do not give you and your mom an answer you understand, continue to ask questions until you do understand. And never be afraid of looking for a second opinion.
  13. How long for scans?

    DC, Your mom is being treated with an immunotherapy drug - Nivolumab as a second line therapy after platinum based chemotherapy did not address the disease. I assume your question's words "still no results" means no reduction in the size of tumors, not no reported results from the scan. If I am correct in that assumption, those who start a course of immunotherapy often go through a period where tumors do not shrink and even perhaps increase in size early in treatment. It takes time for the immune system to recognize and attack the tumors and so the no results from July to October may not be odd. Perhaps other forum members taking Nivolumab or immunotherapy can chime in and share their experience. I hope things improve quickly. Stay the course. Tom
  14. New to Cancer

    Susan, Thank you for the response. My sister had breast cancer (9 yrs cancer free) and she was devastated. But she has been helping me through. So far, have not lost hair, but only second treatment. I was informed it will probable happen in the next couple weeks. Not looking forward to it, but I have very understanding friends and family. It really helps. I no longer work. I am 71 in November and retired so I only have to be in public when I want to be and with whom I want to be. That also helps. I know with God's help I will get through this but I really appreciate all the feedback I get. Thanks again for the response.
  15. xrays

    Bes, Ok -- now we have a treatment plan. Radiation will indeed help with the pain. It should mostly eliminate it. My radiation experience, side effect wise, was almost nothing for the first two weeks. Then in week 3, I started to develop a dry, non productive cough and an irritated throat. I'd get a supply of Halls cough drops that were very helpful. My radiation oncologist also prescribed a pretty potent cough syrup that helped. In weeks four through six, weakness started to settle in. I was very tired, lacked energy, and spent a lot of time in bed. Radiation is the inverse of March. It comes in like a lamb and leaves like a lion. Did you learn the type of chemo the doctor is suggesting? Telling us the names of the drugs may help forum members advise of side effect mitigation strategies. Let us know how he is doing. Stay the course. Tom
  16. My mother in law has Stage 4 Squamous NSCLC. She is not PD-L1 +, so she had platinum doublet then Progressed. She started Nivo in July and seemed to be stable if not feeling better! She had a scan Oct 11 to see if it is working and still no results! Does that seem odd?
  17. xrays

    Dr. visit went well yesterday and we were able to view the pet scan. The dr. is suggesting starting off with radiation treatments first for pain relief--(we see that dr. tomorrow)and when that is completed to start a once a week chemo treatment. A ct scan will be taken after a few months to see any changes and if things progress well he will be on maintenance chemo--once a month. He told us that the cancer is confined to the one lung and has not spread to any other organs or lymph nodes--he said that was good news; the bad news was there is not only the mass next to the ribs/lining area but 2 other nodules one 2cm and one much smaller--he is hoping the chemo with shrink those--we will return to the oncologist in 3wks to discuss the chemo treatments. I am hoping the radiation helps with the pain as the medication is making him sleep all the time.
  18. Good morning, Kathy. Treatment choice is a very personal choice; you have to decide what's best for you and your situation. I decided to treat mine as aggressively as possible. I'm an only child with a father fighting lymphoma; I figured my mom has enough on her plate! I had a lobectomy in February 2016; cancer had also spread to seven of 10 lymph nodes they removed. I followed surgery with four rounds of cisplatin/alimta (pemexetred). I had chemo on Fridays and generally felt good until Sunday (when chemo steroids wore off). Monday and Tuesday were rough but by Wednesday, I was turning the corner. I had three weeks between treatments. This is not to say that I didn't have side effects; I did. I had a recurrence earlier this year and had additional chemo (carboplatin and taxol) and radiation. This round of treatment was much more challenging. Again, I wanted to be as aggressive as possible. In fact, I've told my oncologist to do whatever it takes. I had my last radiation in May and my last chemo in July and I'm almost back to my old self. As for statistics, don't bother looking at them. There are many, many wonderful people on this forum who, according to statistics, should be dead years ago. Statistics are just numbers that don't account for your age, your overall health, etc. Keep us posted on your progress.
  19. Heather Hogan's Story

    Hi Heather. I too have been diagnosed with the same. I had developed a "laryngitis" this past May 2017 and after 2 family doctor's and 3 ENT's it was discovered I have 2 left lung NSCLC nodules that spread to 1 lymph node. The Cleveland Clinic is where I am seeking solutions, I am definitely scared to death that what they want to do to me will only kill me....more... In your discussions with others, have you come across other therapies that were less toxic, possibly more effective and maybe something you said to yourself "If only I'd have known, I would have done that"? There's a lot online suggesting dramatic nutritional changes, going organic, juicing, no meat, plant based only, no GMO, change to filtered water, remove toxic cleaning agents, etc.. that your body can heal itself. Again, fear and scared to death that I could only encourage the cancer to take further hold by avoiding traditional treatments... Any thoughts? Thanks for taking the time.... Kathy
  20. Is anyone struggling with the concept of Chemo? And the tremendous toxins they want to inject in my body....verses possibly changing lifestyle and going the nutrition route? Of course every family member and friend wants me to go Chemo/Rad. I had 2 nodules removed from my left lung and a lymph node that it apparently spread to... The lymph node resting so close to my vocal cord nerve that I developed a "laryngitis" that caused the need to determine cause when standard measures proved to fail to solve. I felt great, short of the noticeable voice impact, and still do after surgery, short of obvious surgical pain. And to the best of my knowledge... Cancer free... I guess that's not true for quite a while... But I am not interested in the horrible odds of "5 year survival" and to endure all that Chemo and radiation subject you to... for that?? I have been reading up a lot on nutrition and juicing and Organics and GMO and of course I asked my Oncologist if nutrition mattered... "Of course not"... I am meeting with my Thoracic surgeon this coming Friday, Oct 20...I have preliminarily/generically been diagnosed with Adenocarcinoma NSCLC. The mutation not yet determined, awaiting results. The surgery was a secondary change of mind, initially they were considering Chemo/Rad first then surgery, but changed direction when they... and They being the Cleveland Clinic in OHIO...didn't feel they had enough of a sample to determine Chemo route... The surgery was basically a wedge biopsy of the lungs having done a biopsy of the lymph node 2 weeks prior. And even though it's in the Lymph node, they are not referring to it as metastatic....yet I suppose... I'm sorry this may be all over the board...but the surgery has bought me time to look over solutions and I'm on info overload. Initially, the Oncologist was suggesting Cisplatin and ALIMTA, but this may possibly change with further diagnosis.... Heard Cisplatin is more worse than C I am scared that I'm adding insult to injury with Chemo. There are sooooo many side affects that all I see is misery before death. Has ANYONE found anything else ... that does not have such a barbaric approach to finding a cure or reversal of our dianosis'. I do not mean to offend anyone who is choosing Chemo/Radiation...
  21. Yesterday
  22. Tom-How did your body respond to complete removal of the lung? How have you adapted?


    1. Tom Galli

      Tom Galli


      How did my body respond to my lung removal? I was well on the way to surgical recovery until about 5 days after hospital discharge.  Then I started running a high fever and was back in the ICU and that started a year's worth of surgical complication.  Once this resolved, tumors were found in my left lung so I went from surgical mayhem to chemotherapy mayhem that lasted 2 years.  I have chronic pain because the surgeon had to re-enter my chest in incision area for 3 operations and I've suffered substantial nerve damage.  That is unusual.  Most I know only have one procedure and recover quite quickly.

      How have I adapted with one lung?  Well -- I can walk enough to enjoy touring though cities while on vacation.  I can't run very far.  I get winded climbing moderate hills but managed all the steps to get to the Edinburgh Castle from street level.  I hope this helps.

      Stay the course.


  23. Susan, I appreciate your response. My docs met and I am now going in for surgery to remove the upper right lobe. Once I recover from surgery, the chemo will start and I believe the same two drugs you had will be used. How has your recovery been progressing since you have started the chemo. Has your cancer responded to the chemo and how is your body handling it?
  24. Immunotherapy and chemo combo

    Nshirley, Combination therapy with immunotherapy and conventional chemo is a new concept. Immunotherapy treatment alone is a new concept so there may not be a lot of experience base on this forum to answer your question. I searched some oncology sites and found this article for your consideration. It seems to support what your MIL's doctor is suggesting. Stay the course. Tom
  25. Find A Cure Panel specializes in patient research for rare and serious disease and we have some current research for people and caregivers of people with Stage 4 Non-Small Cell Lung Cancer (NSCLC). To qualify for this research, you or your loved one: Must have a diagnosis with Non-Small Cell Lung Cancer (NSCLC). Must be diagnosed with stage 4 or metastatic NSCLC. If you are a caregiver, you must be knowledgeable about your loved one’s condition and treatment. You or your loved one must have been diagnosed within the last 3 years. You or your loved one must have experience with treatment. If you or your loved one have a mutation (ALK, EFRG, Ros+) then you will NOT qualify. It is easy to participate in. The discussion is a confidential telephone with one moderator talking about your experience with NSCLC and researchers silently listening. If you are interested in participating, please contact FACP at info@findacurepanel.com and reference FACP/NSCLC.
  26. Hi I'm new here

    This is the perfect place to vent. We understand. Is your dad receiving any palliative (not hospice) care to alleviate pain and discomfort from his cancers? If it is available in your dad's area, you might check into it. It could give you some peace of mind. Hang in there and keep us posted.
  27. Mucinous Adenocarcinoma in Non-Smoker

    Hi, Roz. I had a lobectomy of my upper left lung and followed it with four rounds of cisplatin and pemexetred. The cancer had spread to my lymph nodes, but was not in the other lung. I have just plain adenocarcinoma, so I'm not sure I have much to offer you as far as experience. However, I'm sure there are others on this forum who can provide some insight.
  28. A beautiful book about a saint.

    Hi all, I just read a beautiful book about a saint. It is inspirational, heart warming and filled with love. here is the book which is free thanks to its author . http://b-ok.org/book/2172492/fbf26b Hope you enjoy.
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