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  1. Today
  2. Pet scan shows it's back

    Can anyone discuss your report of your dad's condition? Sure, but with lots of hesitation. Small cell is a beast! Therein, my reluctance to discuss the implication of his recurrence and mets to the liver, bone and brain. From my reading (and likely yours) your dad's pattern of metastasis fits the typical profile for small cell. And as far as brain mets go, I see very little difference between "much worse" or "just worse." Small cell metastasizes quickly and now chemotherapy is the only curative weapon available. There are trials and recent advances in immunotherapy in certain instances but there is that dearth of research ever present that hamstrings doctors treating any form of lung cancer. Unfortunately, small cell gets a double dearth. Does that mean give up? I don't believe so because we hope his second line treatment arrests his disease. But, it may only slow the disease but in so doing it extends life. I was at the same point your dad is at now. I have Squamous cell NSCLC and experienced four recurrences after NED treatments. I was mid-point into my fourth line treatment of Taxol and Carboplatin and my oncologist was running our of bullets. My wife found the magic bullet -- stereotactic radiation -- in her reading. We had booked a Hawaiian cruise and though of cancelling. But all my doctors strongly encouraged us to go cruising and we did. We took some time to live and while that trip was 10 years ago, we still share pleasant memories. So there is time. There is time to rediscover your father and make pleasant memories. Stay the course. Tom
  3. Yesterday
  4. Pet scan shows it's back

    Thanks so much Teri. And yes, hugs are so appreciated. Actually, that's something I'll always remember from my dad, he has this phrase: "feel my hug." I've always loved that, for whatever it's been worth over the years. And I do think he's having some really hard internal struggles for sure. I wish I could whisper in his ear that he's been forgiven by many for years now. He needs only to enjoy his family now. Can anyone discuss this news? Recurrent SCLC after six weeks, 80% regrowth of the lung tumor, metastases in the liver, bones and now brain? I just don't know if the brain makes things much worse or just worse. Thanks again to all of you. You're literally my source of info. <3
  5. Hello God Bless youi am a colon cancer survivor of 23 years and they found nodule onmy lung and want to do a biosopsy of the nodule wednesday

  6. Pet scan shows it's back

    Crap--sorry to hear that news. I was fortunate enough to be early stage so I'm not much help in terms of treatment or what to expect. Thankfully there are some very knowledgeable people around here who can give you more guidance as far as that goes. I know that for myself, personally, I can't stand the thought of anyone worrying about me. I think it's nice that you made him laugh, and that you are having this opportunity to connect after so many years of estrangement. My guess is that he's feeling some regrets about not being closer to you--before I had my surgery, I was doing some of that soul-searching. I'd suggest just kind of following his lead. Maybe your half-brother can keep you informed about the details and you can just provide whatever emotional support he seems to want. Just sending you a hug, if that's OK. Teri
  7. Pet scan shows it's back

    Thanks for your thoughts on this. I called my dad today. He seemed in good spirits but he got off the phone as soon as he could without being rude. He didn't talk about the MRI at all. I just kept it light and tried to make him laugh by admitting my kids, who I love dearly and my life revolves around, are grating on my nerves! It cracked him up because I've NEVER said that before! I told him I'm finally admitting I'm ready for school to start. He said he gives me credit for never having said that before now, my son starts high school and my daughter will be in fifth grade. He says he's impressed I held out so long! All that said, my dad has never seen me as his little girl, we've spent at least half my life not even speaking. His wife has been the wedge between us since I was literally a baby and I've not lived with him since he moved in with her when I was two. I think it's more about him not wanting pity or to acknowledge the severity of his situation. I also so vividly remember his wife urging him to quit smoking a few years back saying no one will feel sorry for him when he gets lung cancer. So I'm guessing he's dealing with shame as well, though is most definitely isn't coming from me. My view is that everyone should live their lives and no habit is better than another. I have no criticism of him whatsoever, only love. And forgiveness. Anyway. I texted my adult half brother. He told me the cancer has spread to his brain.
  8. Kara Capasso

    When my dad, Fred Gontarek, was diagnosed with lung cancer, I felt lost. I wasn’t sure where to turn. I searched the internet as most people do to see what support was out there and what was being done to raise funds for research. Sadly, there were not many local organizations or funds being raised for lung cancer. I vowed to try to change that. I found the Breathe Deep Philadelphia Event was coming up in the Fall of 2011 and knew we needed to be there for Dad and with Dad. Team Fred started in April 2011 with the motto “No One Fights Alone” to show my dad how many supporters he had and to give him hope during his battle with lung cancer. Fred fought as hard as he could until he passed away on April 28, 2012. The motto was then changed to “Never Forget” since our memories of him and what he meant to us continues to live on. Team Fred first walked in 2011 with Fred by our side and today we still walk in his memory as he watches over us. I first formed a team for Breathe Deep Philadelphia in 2011 and have continued to volunteer each year after that. This year it is an honor for me to be the event coordinator for Breathe Deep Philadelphia. The Breathe Deep events program provides knowledge and support during a difficult time. These events give friends and loved ones a chance to gather together to not only raise funds but raise awareness and offer their support. The most rewarding part of being a Breathe Deep event coordinator is knowing that I have a part in raising the funds necessary for critical lung cancer research. My dad was a man who would do anything for anyone and I know that if he were here today he would be right by my side helping in any way he could. My focus is keeping his memory alive while hoping to positively change the lives of others. I hope my fundraising efforts will support life-saving research that is necessary so that one day we can live in a world where no one dies from lung cancer. Kara (right) and Team Fred at Breathe Deep Philadelphia Kara and Fred dancing at her wedding
  9. LUNGevity Foundation is proud to announce that Drew Moghanaki, MD, MPH, has joined its distinguished Scientific Advisory Board. Dr. Moghanaki is a highly regarded expert in the field of radiation oncology and leads the Clinical Research program at Hunter Holmes McGuire Veterans Affairs Medical Center in Richmond, Virginia. Dr. Moghanaki has been instrumental in bringing more than $34 million in funding to improve outcomes for lung cancer patients through a phase III lung cancer trial for veterans and a key VA partnership to increase access to lung cancer screening. LUNGevity’s Scientific Advisory Board oversees the Foundation’s scientific strategy and ensures that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives of all people diagnosed with lung cancer. LUNGevity’s awardees are working to improve our ability to detect, diagnose, and treat lung cancer, as well as prevent its recurrence. LUNGevity is the only lung cancer non-profit with a long-term, strategic focus on the early detection of lung cancer. “We are thrilled to have Dr. Moghanaki join LUNGevity’s Scientific Advisory Board,” said Andrea Ferris, president of LUNGevity Foundation. “He brings expertise in radiation oncology as well as a deep knowledge of the VA healthcare system. We are excited to have his unique perspective and expertise to help guide our research program.” Read the full press release here.
  10. LUNGevity Foundation is proud to announce that Drew Moghanaki, MD, MPH, has joined its distinguished Scientific Advisory Board. Dr. Moghanaki is a highly regarded expert in the field of radiation oncology and leads the Clinical Research program at Hunter Holmes McGuire Veterans Affairs Medical Center in Richmond, Virginia. Dr. Moghanaki has been instrumental in bringing more than $34 million in funding to improve outcomes for lung cancer patients through a phase III lung cancer trial for veterans and a key VA partnership to increase access to lung cancer screening. LUNGevity’s Scientific Advisory Board oversees the Foundation’s scientific strategy and ensures that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives of all people diagnosed with lung cancer. LUNGevity’s awardees are working to improve our ability to detect, diagnose, and treat lung cancer, as well as prevent its recurrence. LUNGevity is the only lung cancer non-profit with a long-term, strategic focus on the early detection of lung cancer. “We are thrilled to have Dr. Moghanaki join LUNGevity’s Scientific Advisory Board,” said Andrea Ferris, president of LUNGevity Foundation. “He brings expertise in radiation oncology as well as a deep knowledge of the VA healthcare system. We are excited to have his unique perspective and expertise to help guide our research program.” Read the full press release here.Dr. Drew Moghanaki joins LUNGevity Foundation Scientific Advisory Board
  11. Pet scan shows it's back

    My dad had extensive stage sclc almost 15 years ago when there were very few options. He had every side effect in the book. It was a difficult time. Since then, I've watched lung cancer research grow and funded and have seen many breakthroughs in treatment and medications. There are many more options today. As for your dad not calling- he may be trying to protect you- his little girl. Always his little girl. My dad didn't want me to worry. He didn't want to share "bad" news or uncertain news with me. It look many months for that to change. Maybe your dad is trying to shield you from news until he knows more or until there is "good" news to report? Talk to him. Let him know you can handle it and you will be there for him. We will be here for you. Keep posting and keep us posted! Many hugs- Best hopes, KatieB
  12. Introduce myself

    Good morning, Mary Lou. We're glad that you found us. This site is an excellent resource for patients, caregivers, and family and friends. Can we point you in any direction? You might check out this link to help you get started:
  13. Pet scan shows it's back

    Thanks so much for this KatieB. How did your dad's treatment go? I'm so sorry you've gone through this too. I really appreciate the support I've gotten here already. <3 I haven't heard back from my dad since he called with his scan news. I know he got his results from his brain MRI and he started his chemo Monday. I'm sort of surprised he hasn't called because he usually does on his way home from the hospital. I'll try calling him tomorrow.
  14. Introduce myself

    Hi, I am Mary Lou, I am glad to have found a support group for people living with Lung cancer; with prayers and love, Mary Lou
  15. Last week
  16. Small cell

    Peg That is great that u both finally got some sleep.I hope his cycle of chem goes smoothly.rogers got delayed for week. Today is our anniversary( 28) and I made a roast instead of going out.what state do u guys live in. If I can ask? Rogers doctor just ordered meralax and a stool softener then after he ordered it which we didn't get yet( mail ) he went phew. I don't know if I mentioned but my brother is dying I guess of stage 4 non small cell Aden he just told us don't get constipated its very painful rocks phew! I worry on all ends for everybody. Prayers michele
  17. Questions for doctor

    Hi there, I am happy that your mom is allowing you to go with her to the doctor. One important question to ask is if more than 50% of her cancer cells test positive for PD-L1. If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages. Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy. Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment. And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years. I personally do not feel you are giving your mom false hope. The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic. The fact that your mom is already healthy is good for her. I also feel that when we believe something, it can either help us or hinder us. Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term. I'm so very sorry you are having to travel on this journey with your mom. No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy. Take Care
  18. Small cell

    Michele, Last night brought us both about 8 hours of solid sleep. Our consult with our family Dr was an answer to a prayer. He took him off Norco which was doing nothing. Gave him Ibuprofen 800 2x a day with the gabapentin. he gave us Hydrocortisone 2.5% and told us to keep also using the Lidocaine. He also told me not to use the prescribed ER drugs for constipation because both are harsh and result in pushing which we do not need. Lee's problem has been chronic diarrhea since end of March not constipation. The chemo & that caused the fissure. His pain level today maxed out at around a 3 and day 2 of chemo. Tomorrow brings end of round 3 BUT they need to put a port in. How are things going for you both?? Peg
  19. Questions for doctor

    There are no stupid questions. How do we learn what we are up against if we do not ask. I do recommend writing all your questions down. It helped me initially and even if the question seemed dumb I still needed the answer. The elephant in the room which no one wanted to ask was how long? My husband and son were kinda shocked when I did ask but I needed to know all of our options. So please ask away! Hugs / Prayers, Peg
  20. Questions for doctor

    So my mother who is stage iv with metastasis to liver finally told me the truth about her diagnosis. she originally told me there was one tumor in one lung and a small spot in her liver and they didn't give her any idea of her survival rate. today she told me there are several small spots on 1 lung and then the small one in her liver. she has had 4 treatments of keytruda and the first scan looked good. her doc only did a scan this early because he was concerned because her voice had become hoarse, but he said nothing more is concerning him right now. she is due for another scan in a few weeks and has finally agreed to let me go with her and ask questions. What are some things I should be asking? one thing I want to ask, but maybe it's a stupid question is If the cancer is primarily the small spot in her liver and the small one in her kidney, why isn't surgery an option in the future? if the keytruda can get rid of the cancer in her liver, is a lung removal an option? Why isnt she beng given traditional chemo along with the keytruda as that seems like a common treatment option?She truly feels like she only has 2 years because he mentioned that he can't promise she will be here longer. I've tried to tell her this isn't an expiration date and that he told her that before she was ever tested for keytruda. Am I wrong to give her hope at this stage? She is only 53. She is still very healthy. she goes to work every day and aside from feeling tired after treatment, she seems fine right now. she even gained all her weight back in the last few weeks. Thank you in advance for any suggestions.
  21. Just diagnosed with lung cancer...

    Hi, Dave, Here's hoping for good scans today! I'm sorry it's been a long and frustrating process. I hope that each day you get a little stronger. Please post an update when you can. We're thinking of you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  22. Palliative Care

    Hi, ViviAnn, I will reach out to our members to encourage someone with experience with palliative care to respond in this thread. In the meantime, here are some posts and links that you may find helpful: https://www.caregiver.org/understanding-palliativesupportive-care-what-every-caregiver-should-know With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  23. new diagnosis

    Hi, Julie, I just had my upper left lobe removed after a lung nodule my pulmonologist had been following grew and had a "highly suspicious appearance." Pulmonologist said there was, based on what he was seeing, maybe a 1-2 percent chance that it was non-malignant, and it was suspicious enough he recommended removal regardless of whether it turned out to be cancer. At the time, the nodule was about 1 cm (it grew a bit more before surgery and was about 1.5 cm when it came out). Everything I read about cyberknife suggested that it was really only appropriate when the patient can't tolerate surgery (e.g., poor lung function). I was tested and found to have GREAT lung function, and my surgery (VATS--minimally invasive) was pretty undramatic (though I did have a post surgical air leak that puffed me up pretty bad and put me back in the hospital for a few more days to properly deflate). I had surgery on July 10, and have recovered virtually completely. I still try to take it easy stretching the area of the incisions--I started back to yoga bit too soon and paid for that, but after a week off from yoga and going slow and easy, I'm doing great. I figure in a few more weeks I probably won't even feel the effects of the surgery. After the pathology was finally worked out, I was staged at 1b NSCLC (adenocarcinoma) (surgeon thinks it SHOULD be 1a, but there was some disagreement about whether the tumor had invaded the pleura). Anyway, no chemo for now--just on scans every six months to make sure everything stays happy. I just wanted to reassure you that if you are eligible for the VATS surgery, it really isn't a terribly big deal, and offers the best prospects. When I asked my surgeon to explain the reasoning behind removing the entire lobe, he said that doing that cuts off (literally) all the blood/lymph vessels that errant cancer cells could use to escape. That's why it's the preferred mode of treatment when it's early stage. The traditional "open" surgery is a much bigger deal in terms of recovery time/pain/etc., so I was really relieved I didn't have to go that route. Keep us posted! Teri
  24. Don't help me. I am a fiercely independant woman. i am a survivor. I am strong. I will beat this (insert cancer type/condition here) and my life will inspire others. If I show weakness then it wins. I will get up everyday and tackle the world. I will do my hair and put on lipstick and look as amazing as I can so no one will know that I am "sick". I will not ask anyone for help. I will carry all of the groceries into the house. I will change the water bottle on the water cooler. I will carry packages to Fex Ex. I will walk the dogs. I will drive myself to scan appointments and blood draws and biopsies. I will wash and dry laundry and I will never miss a single day of work. Please help me. I get up everyday in pain. It takes me longer these days to do my hair and put on my lipstick. I carry all the groceries into the house and I have to sit, catch my breath before I put them away. I wait until I am practically dying of thirst before I change the water bottle on the cooler. I carry the heavy packages into Fed Ex one 5 pound box at a time. I no longer walk the dogs- that's what the doggy door is for. I drive myself to scan appointments and wring my hands and bounce my leg because I am afraid of bad results. I drive myself to biospies and sometime I cry when I'm alone and putting my clothes back on. I can take laundry for 4 people up the stairs and put them away, but my body will hurt for two days after. I never miss a single day of work- but sometimes I am working from my bed. It's easier for me to help others than it is to help myself. While I want to do everything myself- there are times that I get really annoyed if those I love don't offer to help me. To their credit how can they know I need help when I don't look or act "sick"? Ask me.
  25. #48 opdivo

    Thank you Steff and Wayne and bless you both! I know that there have been a few patients in my Dr.'s care that responded to the Opdivo but the side effects were either to much to take or the Opdivo attacked their internal organs so they were forced to consider other options. I try to keep my hopes set on remission but i also have to sort all of my life into boxes for my kids and husband, this depresses me, so i quit but i know i have to do it. Sometimes it's hard to stay positive when you are preparing for your own death.All of our family live in Il. and we live in Ga. we moved here almost 7 years ago because my husbands place of employment moved here, so no friends here either and the hubs don't know what to say and to be honest he would rather not talk about my cancer. Now don't get me wrong he loves me and goes to every infusion and Dr. appointment which is every other week, he just don't want to talk about my possible death and i don't know if i am weird but my death does not scare me but i am worried about my husband and kids and dog and cat lol
  26. Palliative Care

    Does anyone have experience with Palliative care? ViviAnn
  27. Earlier
  28. Pet scan shows it's back

    Hello. My father had chemo for four rounds (3 days in a row every three weeks for 12 weeks). Then he had a scan which showed either the tumor was gone or had shrunk down so small they couldn't see it (I don't live near him so I only go off of the limited info he shares with me). They stopped the chemo and he enjoyed life until he got a chest cold but he came out ok with rest and antibiotics. Well, he went for his six week PET scan and called to tell me the tumor is back and "it's bad." He never told me what happened to or how the cancer in his liver and bones were post chemo the first time so I'm not sure if they got better? They will do an MRI to see if he has anything in his brain. I also don't know why but they had once planned six rounds of chemo but then only did the four. Anyway. Can anyone tell me what this means? Is it normal to have it come back this soon? How effective will the chemo be this time around? He said he will go for five days in a row every other week. I'm worried about him and I know he's scared but I don't know what it really means. Any info would be helpful. Even some terms would be great, for example, what is it called if it comes back after getting better? It's not like it was remission if it only went away for six weeks, is it? Ok, thanks for th help.
  29. Small cell

    Hello I like to know is there anybody here with small cell. My husband was just told his right now is limited. Can u live long with small cell. Are there any people here. He starts chemo in 2 weeks.if there is no cure then what do u do. Please help I'm trying to be strong
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