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JulieG

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Everything posted by JulieG

  1. Your mom may have had the scans by this time, but I wanted to chime in here. As others have said, there are no stupid questions. I was diagnosed almost 10 months ago, and I ask him a couple of questions at each appointment, because of things I read about here and elsewhere. So, ask whatever you want to know. I have a little notebook that I bring to my appointments, otherwise I'd probably forget something or not remember exactly what my doctor said. Also -- none of us have an expiration date stamped on us. I also asked my doctor "that question" when I was diagnosed and he said 6 to 12 months. I nearly fell off my chair. But he meant that as a "soft number"... if I didn't have any treatment, or if treatment didn't go well for me. No one can say with 100% certainty how long a patient will live, because there are so many variables. Your mom sounds like me -- I work full time, I feel perfectly normal most days, I cook, clean, work in the yard, etc. My health, other than the cancer, is good, although I do get tired more easily now. I don't think you're giving your mom false hope. You'll help her to realize that despite this horrible disease, she can still do things she enjoys. There is definitely a "new normal" that she will come to terms with. We don't have to like what's happening, but doggone it, we don't have to let it rule every moment of every day. Last year, I thought it was going to be my last Thanksgiving, last Christmas, etc. Now, I'm making plans for next summer's vacation. I've met several people through a local support group who have been fighting lung cancer for 3 years or more. Most of them had been told something similar to your mom. I'm so glad you're there for your mom. I have two sons in their 20's and they are a huge support for me. When my husband and I told them I had cancer, it was the hardest thing I've ever done. As a mom, I understand that your mom didn't tell you everything at once because she didn't want you to worry about her or be upset, frightened, etc. Even though they're adults I feel protective toward my "boys". But I'm proud that these young men are going to be with me through the good and the bad. Your mom feels the same, I'm sure. Take care, and I hope you will let us know how things go. JulieG.
  2. Hello ViviAnn, after my diagnosis last November, I received a call from the palliative care office at the cancer center where my oncologist is. She said my oncologist always has them give his new patients a call, to briefly explain the services they offer. Since she called me during the day while I was at work, I couldn't speak to her for very long, and promised I'd be in touch. I finally ended up making an appointment a couple of months ago and had a great discussion with the nurse practitioner there. She explained that if I am having pain issues (I'm not, currently), she is able to give me options, both medical and just practical information, for dealing with it. For example, Tylenol doesn't usually work very well for me, but Advil does. However, Advil isn't advised for pain relief with the oral chemo I'm on (Tagrisso), so they could prescribe something else that would work. My biggest issue is that I experience a lot of "scanxiety". Although I'm not completely against treating it with drugs, I'd rather not take something every day. She gave me a couple of ideas for relaxation and being able to acknowledge and work through those feelings, and also said I could just take an anti-anxiety med for a few days just to get me through it. That's something I would feel comfortable doing, and in fact I plan to give her a call before my next round of scans. When I mentioned to a couple of my friends that I'd seen the palliative care nurse, their eyebrows went up a bit. I explained the difference between palliative and hospice care. Even I had been reluctant initially, but it's so good to know that there are options like this to deal with symptom management. Thankfully, my symptoms right now are fairly minor but I think it will be a plus that I'm already "on their radar" when symptoms become harder to deal with. Hope that helps you a little. JulieG.
  3. Thanks, Tom. I'm still going through the articles you shared the links for. Interesting reading so far. JulieG
  4. Hi Julie... yes, this is definitely doable. Not always easy, but you'll learn that you're stronger than you ever imagined you could be. Glad to hear you're feeling better. Not a JAG, I'm a JLG.
  5. Hi everyone, I have Stage 4 NSCLC, with mets to my bones. My first treatment was carboplatin and alimta, 4 cycles, three weeks apart. The worse side effects were extreme fatigue and a general achniness, and some queasiness, but no bad nausea and some thinning of my hair. Next up was Tarceva beginning at the end of Feb. of this year. I was fully prepared for the rash because it seemed like it would be inevitable, but it never happened. Again, fatigue (very mild) has been my chief complaint. I have to say, overall, I feel good. Almost normal. My scans from a couple of weeks ago, after about 4 months on Tarceva, showed two new bone mets to my right hip and sternum, but no other progression. My oncologist said we could do another bone scan in a few weeks to see if those 2 areas still looked active, but since these were new areas, he said it was pretty likely they're cancer. So -- as of tomorrow I'll be starting Tagrisso. My question is this -- might a lack of or very mild side effects correlate to the effectiveness of the treatment? I'm finding myself hoping that I'll "feel something" when I begin the Tagrisso in the hopes that it will mean it's working better for me than Tarceva. I know that's a little irrational, but it seems plausible. My oncologist says the treatments don't have to "taste bad" in order to be effective. Thoughts?
  6. Hello Julie, another Julie here. I had 4 cycles of Alimta and carboplatin between Nov. 2016 and Jan. of this year. Chemo day was Thursday. On Friday I felt well enough to go to work (thanks, decadron!), and by Sunday afternoon I began to get the "hit by a Mack truck" feeling. I didn't experience nausea, just some queasiness, easily remedied with Compazine if it got bad enough. I went to work on Monday and Tuesday the following week, again, I wasn't 100% but was functional and able to do my job. My coworkers and bosses were very supportive. I'd get through the day, go home and flake out on the couch (my husband and sons would fend for themselves for dinner). By late on Tuesday I'd start to feel a bit like myself again, and then by Thursday or Friday I'd be pretty much OK. So, nearly a week of not feeling great. As others pointed out, this played out pretty much the same for each cycle, which made it much easier to plan how active I could be during the week. By the time the next cycle rolled around I felt pretty good.
  7. I also meant to add, I joined the EGFR and Targeted Therapy groups on Facebook. Great people there as well as here, and it's so good to interact with people who "get it". I get tremendous support from my family and friends, they are blessings to me. But only another cancer patient can completely understand. Julie
  8. Thank you so much for the welcome and for those links, Tom. It has taken me months to get to a point where I could actually read about lung cancer without nearly having heart palpitations. Honestly, I'd start reading some of the grim statistics and just couldn't read any more. I'm past that, and am eager to learn more about the EGFR mutation. I know it will take me a while to get through those and digest the info. Cindy, my scans were last week and I saw my oncologist today for the results. Unfortunately, they were not as good as hoped. Although my CT scan shows everything stayed the same, the bone scan showed new mets at my right hip area (where I'd been having some pain, so I wasn't shocked at all), and my sternum. My doctor offered a couple of options, which were to wait and do another bone scan in a few weeks to see what those new mets look like (I also get Zometa infusions every 3 months, so the bone activity could be the bones healing themselves, but because these are new, more likely they're cancer), or switch to another drug. He favored having me switch to Tagrisso, so once insurance gives its blessing, and all that, I'll be on that. We talked about the fact that I had very mild side effects and whether that is an indicator of how effective it is. Fingers crossed I have better results. My doctor really wanted to see an improvement, not just keep things in check or progression. So, obviously that's disappointing, but my doctor wasn't all doom and gloom so I take that as a hopeful sign. At least I wasn't told there are no other options. Going back to typical chemo could be done too, but with the mutation he'd rather I keep trying other targeted therapies. So, the fight continues. Julie
  9. Hi everyone, After lurking around the site for a couple of months reading posts, I decided to join and become official. I was diagnosed with NSCLC, Stage 4, in November of 2016. The cancer was initially found in my bones, after I finally saw my doctor about pain in my left hip radiating down my leg. I'm nearly sixty, and it felt a lot like sciatica which I had experienced a couple of times in the past, so it took me a couple of months to speak to my doctor about it. Blood work led to a bone scan, and then all heck broke loose. My family doctor quickly referred me to an oncologist, who ordered CT scans and MRIs to find the origin of the cancer. At about that same time, I had begun experiencing shortness of breath, which became quite bad by the time of my chest CT scan. That revealed my left lung was filled with fluid and partially collapsed. I had the first of several thoracentesis procedures, and the fluid was malignant. I started chemo (alimta and carboplatin) the week before Thanksgiving and had four cycles. Before the 2nd cycle, we learned I had the EGFR mutation. My oncologist felt it was better that I complete the course of chemo rather than switch, since I was tolerating the chemo very well. I started Tarceva at the end of February of this year. I just had my first set of scans last week since starting Tarceva, and will learn the results tomorrow. I'm a bit anxious, but hopeful that the Tarceva has been working. I've had very mild side effects with that as well. I'm married (my husband has been my rock since this all began) and have two sons in their 20s (telling my sons was the hardest thing I've ever done). I'm actually feeling good, so I've been able to maintain my normal routine, go to work go walking, yard work, cook, shop, clean the house, etc., etc. which has helped my sons see that I'm not imminently dying. I know the realities of this disease and the long-term iimplications, but I'm determined to make the very best of things especially while I feel good. Although I was a little reluctant to really delve into researching treatments and such at first, I'm now ready to learn more about the EGFR mutation and what some other options will be for treatment when Tarceva stops working. I also meant to mention, in early December I had a VATS talc pleurodesis on my left lung, which effectively stopped the constant accumulation of fluid. I still have some numbness and occasional discomfort around my lower ribcage as a result, but it sure beats a weekly thoracentesis. Getting a cancer diagnosis is sure a kick in the gut, but i'm up for the fight (and if it had to happen to anyone in my family I'd rather it be me instead of my husband or, heaven forbid, one of my kids). I'm looking forward to learning more from the rest of you who are also on this journey. Julie
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