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  1. Today
  2. Laurel

    Lobectomy tomorrow -11/29/18

    I hope you feel improvement soon. I had pneumonia twice this year and it took 5 to 7 weeks to believe I'ld come out of it. There is improvement now. I pray you feel improvement soon.
  3. Robb676

    Lobectomy tomorrow -11/29/18

    Well I got aspiration pneumonia in the other lung that has COPD. If I new this would be the results of it I would have never had the surgery!!!! I have always been able to breathe fine and now I can't move from the bed to the chair without gasping for air. I feel that myl ife is ruined now.
  4. Robert Macaulay

    Radiation again?!

    Kleo Now the same tumor that is a intresting question.The radiation doc here got all my records from the previous radiation on my neck and he checked them prior to treatment on my chest. This might help Questions that must be asked by the radiation oncologist planning the therapy include: "Is the same area of the body being irradiated as was irradiated before?" "How much radiation was given to that site before and how much radiation is needed to kill this second particular cancer?" The physician will want to get records of the previous radiation, and the decision to radiate a second time frequently requires computer simulation (radiation planning). Bob
  5. Yesterday
  6. Roz

    Radiation again?!

    Sorry I don't know anything about radiation Kleo. Hope someone answers your question!! Best, Ro
  7. Kleo

    Radiation again?!

    Hey all...just thought I'd put this question out there in case anyone here had this experience. Has anyone had radiation treatment to the same tumor... twice? I thought you could only do one round of radiation treatments on an area, but my radiation doc is talking about doing Stereotactic radiosurgery (?) now for my tumor. My recent PET shows that the tumor shrunk quite a bit from prior treatments but still shows an SUV of 3.6. 🤨
  8. Robert Macaulay

    Durvalumab

    Kleo If you get that treatment you will not be short of something to listen to. lol I thought the same thing about radiation for the second time as i had it previous in 2002 and they told me prior to mine this year as long as it is not in the same spot. What will be will be Bob
  9. Kleo

    Durvalumab

    Just got in from radiation doc. She said likely I'll have to do another biopsy on the rib that's lighting up. Said she will get with my onc and they are going to take it to the tumor board but she may want to try stereotatic radiosurgery on my initial tumor. Didn't think you could do radiation again to the same area but what do I know. 😕 Now I gotta wait to see onc on the 19th to see what the plan is now. Que sera and Fa La La La La!
  10. Happy Monday, my friends! (Yeah, I know, it’s weird, I said “Happy” Monday…it’s not necessarily an oxymoron…hear me out!) I was always the kid who enjoyed the first day of school. How about you? The first day of vacation was pretty great, too! There is great power in “firsts.” We are almost supernaturally (or superstitiously!) drawn to the gravitas of beginnings. I remember very clearly making a circle of hands around my mother when she began her first treatment: my dad, some close friends, the nurses at the infusion center. Some of us prayed, some of us stood silent, some of us spoke whispered encouragement. I’ve heard similar memories from many patients and caregivers. No matter the words on our lips or in our minds, the sentiment is the same: there is great awe when we begin an experience, a journey, a season. I’ve always thought that part of the particular joy unique to a beginning is the ability to cast off any detritus from the previous experience, journey, or season. If there is baggage or fear or angst (or anything else unpleasant) that is keeping us from advancing into the new moment, the changing chapter gives us permission to leave behind whatever we do not need—whatever will not service us as we move forward. In that way, a beginning is also a chance to reset. A couple of careers ago, I was a professional actor. I still do the occasional play, when the schedule is calm, and I recently closed a show with my small community theatre group. During rehearsals, when there is a problem in a scene, or a snag in a set change, there is always one perfect solution: we reset. “Reset” is shoptalk for going back to zero: we literally re-set the scene (actors AND scenery), start the scene over, fix the issue, and then move on with renewed confidence. Like a bone that breaks and heals stronger at the point of fracture, a scene that has been reset usually turns out much better and smoother than it was before. So, I’ve been thinking lately about the significance of beginnings and resets. That brings me back to Mondays… Mondays are the calendar’s “firsts.” For many of us, it’s the first workday after a (too-short) break. For others, it’s the first schoolday of the week. For most of us, it’s the first day we can expect business-hours productivity after the hectic rush that is (usually) Friday afternoon. And, for all of us, it’s the loop-point of the week. It’s the marker of how we count weeks backward or forward, between commitments and appointments. So, it’s a built-in reset. It’s a page-turner. It’s a blank slate. It’s a chance to start over: whatever didn’t get finished on Friday didn’t destroy us, and whatever has to get finished this week hasn’t yet come due. For those reasons, I love Mondays. They’ve become my mini-reset. From Sunday night into Monday morning (I’m an incurable night owl; I’m too old now to deny it!), I find poignant peace in the tiny resets I can enact around the house. I help Monday arrive with its blank slate by creating all the blank slates I can think of: leveling off the laundry pile, clearing the kitchen counter, emptying the sink, running the dishwasher, taking out the trash, refilling toilet paper rolls, cleaning cat boxes, loading drink cans into the fridge… You get the picture. I cannot emphasize enough how precious that time has become to me in the years I’ve been helping my parents. I now look forward to Sunday evening, which, in itself, is life-changing. Instead of fearing Monday morning’s potential onslaught of “stuff” to deal with, I try and push last week’s dirt into the bin (or under the rug, ha!) and set the stage for the week on my own terms. I don’t know why waking up to a sink full of Friday’s dishes on Monday morning is so soul-crushing (knowing the "why" is above my pay-grade), but it IS. It just is. At some point along the way, I learned this: I learned that the sink full of dishes represented everything that did not get “checked off” last week, and that it now stood between me and everything I needed to accomplish THIS week. This was one of the most satisfying epiphanies I ever had, my friends, because the problem was so easy to fix. We can’t change our circumstances, and that alone is the source of most of our stress as caregivers. There is so much about our current situations that we would change if we had the chance, but since we can’t, we need to channel that desire for control into the mountains we CAN climb. And that laundry pile over there is just the right mountain.
  11. Laurel

    Chemo Questions

    To give my mind a respite, I went to youtube.com and would do 5 minute meditation videos. As I felt a little shift in attitude, I might pull up music....like Happy by Pharell or poker face by Lady Gaga. Sending hugs.
  12. Shelkay1

    Chemo Questions

    Thanks Laurel & Bridget, I find myself thinking of the worst possible scenarios when I'm feeling my worst & unable to sleep. I know I need to chill & just wait for the MRI results, think positively in the meantime & enjoy Christmastime with my family.
  13. Moms advocate

    OPDIVO (nivolumab) + YERVOY (ipilimumab)

    Thank you for replying. I sorry to hear your mom had a PE. That's so scary. We actually just got some bad news this past Tuesday. Mom's cancer is coming back and spreading more. This takes her out of the study. She now has to start chemo. She is devastated and we are so scared of what comes next. The meds worked for her for about 8 months before she began progressing. I am just trying to stay positive and hopeful. It's hard! I hope your mom is still eligible for the trial. If not remember there is still pembrolizumab (Keytruda). Her doctors will know what's best for her I'm sure. It's just all scary. Bottom line-CANCER SUCKS
  14. BridgetO

    Chemo Questions

    Hang in there, Shelkay! Waiting is terrible, I know. Until you have this checked out, you won't know for sure if your headaches are even cancer-related. Or side-effect related. I'm sending good thoughts your way.
  15. BridgetO

    Awaiting Biopsy Results

    Keep us posted.
  16. BridgetO

    PANCOAST TUMOR

    Hi LadyLyn and welcome, I'm sorry to hear about the pain you're having. I hope Donna's post was helpful to you. I suggest you advocate with your doctors for a chest xray if one hasn't been done yet. Best of luck and keep us posted. Bridget O
  17. Hi Mom’s Advocate, I’m so sorry I didn’t see this before now. I did not get much response and after a while, I stopped checking. Thank you so much for all of the information. How is your mom? I really hope it is working for her. My mom is also slated for the Lonestar Trial. Unfortunately, she had a pulmonary embolism and spent nearly a month in the hospital. The PE really weakened her, but she is fighting to get stronger. We go back in a little over a week to see if she is still a candidate for Lonestar. We will both be pretty devastated if she’s not. The good news is that as of about two weeks ago, her cancer hasn’t spread. Fingers crossed she will still be eligible for Lonestar. I’d love to hear more about you and your mom’s experience. Thanks again for responding.
  18. Opal

    Durvalumab

    Bob, it took a minute but I get it! Thanks for that!! Eagle 13, after reading your reply I do recall reading that thru this journey. Thanks for the link. And for your story.
  19. Eagle13

    Durvalumab

    Here is the explanation of the biomarkers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5137804/ 🦅
  20. Eagle13

    Durvalumab

    I was put on Imfinzi or Durva right after my Chemo and radiation treatment completed. (With no testing) I received 8 treatments of Durva before I had to stop due to the Pleural Effusion. I am now Stage 4. Biomarker testing was done on the fluid that was pulled. I sought a second opinion with the agreement of my Onc. My Onc was puzzled the Durva wasn’t working and ordered the biomarker test on the fluid. Results came in right before the 2nd opinion appointment. The 2nd opinion Dr took over my primary care by my choice and put me on the targeted therapy. The targeted therapy is 1 pill I take once a day, every day at the same time. The drug for my mutation, EGFR - (Epidermal Growth Factor Receptor) they chose was Tagrisso. I am a non-smoker. EGFR is typical for non-smokers who get non small cell lung cancer. 🦅
  21. Robert Macaulay

    Durvalumab

    Opal Regarding the antibiotics these results are random tests nothing more if doctor gives you antibiotics there is very good reason. What comes first the horse or the cart. .Lol Antibiotics over the course of your treatment might be a concern for a individual, That is why doctors get the big bucks and never fell asleep at classes like me. That song is as good as any works real well for me.😎
  22. Opal

    Durvalumab

    Eagle13, I agree and also don't understand why this isn't done first. I'm going to inquire next appointment. May I ask what is difference in targeted therapy and immunotherapy you were getting? Good luck next week on CT. Maybe you will share. "Never underestimate the power of prayer"
  23. Eagle13

    Durvalumab

    This confirms biomarker testing can be done from blood work. https://www.nccn.org/patients/resources/life_with_cancer/treatment/biomarker_testing.aspx I personally had 11 test tube size viles of blood pulled from me in one sitting to verify the biomarker test results from my pleural effusion fluid. Based on what I have learned I don’t understand why this is not the first test done when you are diagnosed with lung cancer. I am hopeful the current targeted therapy I am receiving will continue to work for me. I’m in the 4th month and go for a CT next week to verify its still working. I beleive it is. After the biomarker testing I was told immunotherapy treatment would not work for my mutation, EGFR. 🦅
  24. Opal

    Durvalumab

    Kleo, I was taking Prednisone 70mg daily. Fairly high dose. I was fine on them. Except made me cranky, eat eat and eat more, and cry for no reason. Oh and sleep was limited. I've heard some people had worse side effects so probably everyone reacts differently. TRIPLETS lol! Then maybe I wouldn't get any side effects either😀 (from durva). Keep us posted on rad doc visit. Sending prayers. Bob, Re the link on antibiotics, OK now I'm wondering about those antibiotics I took while my Immuno was on hold. So even tho it was only on Mon, Wed, Fri while I was on steroids. Wonder if that cancelled out 3 prior infusions. Shall I sing Que sera sera???😥 Next visit I'm asking about Biomarkers. I didn't have done either.
  25. Eagle13

    Durvalumab

    Kleo- I too wish they had done the biomarker testing on my biopsy. My biomarker testing was done on the fluid pulled from the thoracintesis. I also had blood pulled that confirmed the finding from the biomarker testing. In my opinion it can be done from bloodwork. 🦅
  26. Last week
  27. Laurel

    Chemo Questions

    I'm so sorry about your side effects. The waiting and testing is scary. Sending prayers and hugs.
  28. Shelkay1

    Chemo Questions

    Third infusion of Cisplatin/Alimta was on Thursday. Side effects started that same evening. I've had a major headache for the last several weeks that just will not go away & some swelling around my eyes. Doctor has ordered an MRI of my brain (12/20) to make sure it's not metastasized there. When they did the lobectomy, they were unable to get all the cancer & on the TNM scale my M was labeled as X because of unknowns. I've been reading up on this & I see there is a 30%-40% chance of brain metasis & that chemo does not cross over & help destroy any cancer cells getting to the brain. I know I should stop reading so much!
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