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Meloni

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Everything posted by Meloni

  1. LJulieMoss, First, and I failed to mention in my first post: I am so sorry for your diagnosis. Your fear and anxiety are completely normal, of course. I wish you didn't need to be here, but I'm so glad you found this forum. There are a lot of amazing people on this site, and survivors who have been here since the JURASSIC ERA (I'm looking at you, Tom! ). skmcornett is correct, and certainly has the experience to walk you through the process of appealing a denial. Also, I'm reminded that Tri-Care (managed by United Healthcare), offers nurse case management services to people with diagnoses such as ours. If you haven't already explored this option, you may want to check out whether your insurance offers the service. It's beneficial to we the patients because referrals will be streamlined and often approved more quickly. Regarding surgery v. Cyber knife: I'm not familiar with cyber knife. Did your providers explain if one procedure would be more beneficial to overall prognosis? My understanding is that surgery is generally 1st treatment, if possible, but technology changes more quickly than I can keep up. If you're interested, there are many here who can walk you through and just listen to your anxieties and fears of surgery, lung cancer, etc. <3 IF you explore the surgery route, take a look at Dr. Jon Boyum, if he's on your insurance. His team is at Deaconess, but he has privileges at Sacred Heart as well, and he'll operate at either location. He's amazing. I hope to hear from you soon. <3
  2. Hi LJulieMoss, I'm in Spokane, WA as well. Do you by chance use Tri-Care (military) insurance? Meloni
  3. Hi Ktamdgirl, I'm sorry about your mother's diagnosis. Like Tom says, you're at a wonderful facility for treatment. February of 2016, I was diagnosed with Stage IIIA adenocarcinoma. The primary tumor was in my right middle lobe and only measured 13mm (1.3cm), and three mediastinal lymph nodes were positive (I'd have to check my labs to recall the specific ones). I ultimately received treatment similar to your mother's current plan. My radiation was received concurrent with chemo (same combo of chemo as your mom), because I had no pre-existing barriers. Also, I was initially a non-surgical candidate, so my chemo was split during treatment. I received two rounds pre-surgery, and two rounds post-surgery. I like Tom's description of the doctor's ganging up on one another. That is similar to my team as well. Sometimes the oncologist and radiologist gangs up on my (extremely talented) surgeon to operate on something, and he concedes, but then Dr. Surgeon (who is very lung cancer oriented), turns around and convinces Dr. Oncologist to put me on the TKI that they were hesitating on. ANYWAY, I'm digressing. My point is, they have a plan for for treatment, and depending on variables, the plan might change. For example, if your mom needs an extra break in between chemo sessions to recover her blood counts, they already know it's a possibility. If she needs extra help working through the nausea and fatigue, they've got resources for that. Sorry I have to cut this off, have to leave for an appointment. You are very fortunate to be at a fantastic treatment center! Hope to hear from you soon! <3
  4. Meloni

    Port Question

    I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3 P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients.
  5. Meloni

    Shocking news

    Lbelle78, I'm so saddened to hear this news. so many hugs and prayers being sent to you and your family. <3 I tested ALK+ as well, shortly after my lung cancer recurred in January. Now I'm taking Xalkori, one of the targeted drugs they use specifically for ALK+ NSCLC. (my point isn't to talk about myself, but to tell you that, once you have time to digest this incredibly emotional burden that's been thrust upon you, there are several treatments available. Researchers are looking at this mutation, and we are reaping the benefits. <3 I'm happy to hear you will get a 2nd opinion. I hope, if your insurance and finances allow it, that you will consider a specialty center. A doctor who specializes in ALK would be so beneficial, and I'd bet there is some sort of long distance treatment available so you don't have to move (I've heard of some patients having plans written up and sent to their local providers, etc). Regarding your oncologist's lack of hope: there is hope. There is so much hope, and so much opportunity for life and love and watching your beloved children grow, and standing by your husband's side as the two of you grow old together. I read an article the other day, and linked it below. I had been looking for information on the ALK mutation, and here I happened across the story of a young man who was diagnosed with Stage IV, ALK+ NSLC while in his twenties. Spoiler alert: There is always hope! http://www.curetoday.com/publications/cure/2015/lung-2015/hitting-a-target-in-advanced-non-small-cell-lung-cancer?p=1
  6. Hi Julie in SoCal, I had an open lobectomy last May, and I think there are some similarities in recovery. Spirometer - they will likely give you one prior to surgery. Practice with it before surgery, and IMPORTANTLY, use it regularly post-surgery. Walking - your doctor will probably want you to take some slow walks around the hospital once you're out of ICU (ICU is standard after surgery). Do it. Use a walker or wheelchair for support and be kind to yourself. You will fell breathless for awhile until your lungs adjust. Once you get out of hospital, continue with slow walks, but don't go so far out at first that you can't make it back home (my family requested I walk in the backyard unless I had an escort for a few months). Sleeping and coughing can be tough for awhile. I used pillows to support various parts of my body until I found the sweet spot. I also used a small square pillow that my mother-in-law made me, which I held under my right arm and against my upper right thoracic region for support. Bracing with it while coughing helped control the pain, and using it as support helped whiled I walked distances. There are other things, but I'm sure many here have lovely tips! Mel
  7. Taxmeless, I have heeded your excellent advice and am working toward a better eating lifestyle. I can already tell when I stop for a quick burger, that my body doesn't really enjoy it. That, along with the exercise routine will hopefully assist my new round of meds I've just started this week! Thank you for caring. <3 I've been off the boards lately, so I'll poke around and look for an update from you. Hope all is well. Mel
  8. It's good to hear back from you. I'm sorry you don't have better news to report. <3 Happy to hear he is resting, and I hope you can get some rest as well.
  9. Isaut, I'm so sorry for your situation. You are clearly overwhelmed, and who wouldn't be? Like you said, being caretaker, landlord, daughter, griever, full-time employee, wife, and mother all at once isn't something anybody can take on long-term indefinitely. One thing I wanted to ask you about are his recent symptoms and health: if I read correctly, he finished chemo in December, but has had continuous symptoms of a "cold" since that time. He met with the oncologist in February, but after that appointment occurred, his eyes and skin began to take on a green/yellow hue, his appetite has decreased, and his cough became more productive? I would definitely bring this up with the family doctor on Tuesday, but also, don't wait until May to notify the oncologist of these symptoms. I go to my oncologist regularly for symptoms. The oncologist cannot help if they don't know what's going on. <3 Regarding his anger and frustration: I am not in his head, nor his heart, but I can tell you that from my experience cancer, losing control of your life, feeling like a burden to loved ones, and dealing with feelings that can't be shared with family members can be very frustrating. Does your father have any peers to visit with? Is he a veteran? If so, there will be local groups that would welcome him. Does he have any fraternal connections? Many cancer centers have support groups--those can be a great resource. A church men's group might work as well, if you are connected to one. A peer group, or even just one peer, can bring satisfaction to his life, which in turn might relieve some of the frustration and anger, or the manner in which it's directed. And you, dear one: please, please don't forget to take care of yourself. This is a tremendous struggle you are traveling. Vent away. Love your husband. Allow him to love you. Hug your precious child. I'm glad you are looking into Hospice services. They have wonderful care, and you need respite, stat!!! Meloni P.S. I didn't mean to provide a giant post of unsolicited advice. You are right in that sometimes there are no clear answers. I just feel for you so much. You are a wonderful human, and doing so much. It's obvious you love your father and your family. Please don't feel guilt in refilling your tank so you can continue spreading that wonderful love in our world. God bless you.
  10. April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed. I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS! Meloni
  11. I'm reading about your beautiful diet of nuts, berries and fish while stuffing my face with a Quarter Pounder w/Cheese. The others have already provided excellent advice. I'm glad your visit with the pulmonologist is coming up on the 28th. The wait time tests my patience, but my oncologist always reminds me that the window of opportunity will not be lost between now and then. Despite the CT, I remain hopeful that your nodule is benign. It does need clinical evaluation, and I'm glad you're seeing this through. God forbid, the nodule needs obliteration, early detection is the key to kicking it in the butt. You are so very brave to do this. You are not doomed. Finally, I hope you don't beat yourself up about your smoking past. Celebration of your non-smoking present sounds a lot more interesting. <3 Meloni
  12. I'm glad to hear you meet with doc on Monday. Please share the outcome of appt with us, if you are comfortable with that. I have a doc appt tomorrow afternoon as well, so wishing us both good mojo! Mel
  13. Hi Brandon, I'm so sorry to hear about your diagnosis Of course you're in a whirlwind. It's insanity, to think of one so young to be diagnosed with NSCLC. I was diagnosed with the same stage at age 40 last year. Compared to you, we're in different dinosaur eras. After you've had a moment to catch your breath, do you mind my asking what places you at IIIA, and if you recall, why they said you're not a candidate for surgery? If you are at all unclear about their reasoning, it's worth having the physicians explain this in more detail. Do you have supportive people in your life? Take care, and hope to hear back from you soon. Meloni
  14. Hi JLW, Like the others, I would ask clarification about the size of the nodule (or perhaps you have a typo?). The size you indicate, 0.9 mm, is 1/10 of one millimeter. Ten millimeters equals one centimeter. CTs /PETs have a difficult time picking up spots and details of spots that are less than one centimeter. If I recall correctly, the medical community categorizes a mass as >/=3 cm (30 mm), and a nodule as <3 cm (30 cm). The beginning of my story is similar to yours, but our diagnoses may be very different. I had a 1.3 cm (13 mm) nodule that was spiculated and lobulated. It was first discovered by x-ray, and followed-up by CT. Due to my low risk demographic and exposure history, my medical providers chose to ignore it. I persisted, and found a pulmonologist who ordered a PET and subsequently a bronchoscopy, which diagnosed my NSCLC. I spent hours researching lung diseases prior to my diagnosis--I'm clearly not an expert, but your nodule might not be cancer. People have nodules that are completely benign. I am the worst follower of my own unsolicited advice, but try to focus on pleasant activities, and avoid getting caught up in the "lung cancer hole" of the internet this week. Easier said than done, I know. When you get back with the doctor, remember that you are your own best advocate. Be persistent if you feel they are putting you off. However, since your doctor ordered a PET, it doesn't sound like they are putting you off. Is your doc a general practitioner, a pulmonary doc, a thoracic surgeon, or an oncologist? Meloni
  15. Hi Sydney, Holy cow, what a month! I'm so sorry you need to be here, but I'm so happy you found us. There are many people here who have survived against all odds. I found that to be a comfort against the stats when I was first diagnosed a year ago. May I ask what the result of your genetic mutation was? Meloni
  16. We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment.
  17. I agree with the others about getting seen sooner. I was diagnosed last year at age 40, and like you an atypical demographic for lung cancer. I got the run around a few times before finding a wonderful pulmonologist who scheduled me in the following day. Don't let the front desk schedulers put you off. Many don't know the difference between routine and priority needs. Make sure you speak with the doctor's nurse. Tom's idea of having your PCM advocate for you can be helpful as well. Also, how many pulmonologists are in your coverage area? Please follow up. I hope to from you soon. <3
  18. Hello Ncagle. Tom is right; lymph nodes can become enlarged for several reasons. It's good that your appointment with the hematologist is tomorrow, but the fear is totally understandable. I get really nervous when waiting for answers as well. Do you have a list of questions to ask your hematologist? I recommend writing them down. If they don't answer all of them during their explanation, you can ask what doesn't get covered. Do you have a friend or a loved one going with you tomorrow? Meloni
  19. Tom, 

    If I recall, you had a CT last week and will be going in for the results tomorrow? 

    Just wanted to say I'm thinking of you and your wife, and waiting for the best of news. <3

    Meloni

    1. Tom Galli

      Tom Galli

      Thank you Meloni!

       

  20. Meloni

    The Smoking Gun

    Tom, I really appreciate your continued dedication to discussing nicotine addiction, the people who suffer from it, and the need for our country and culture to refocus how we address and manage this health crisis. This affects all of us! If I may share a brief snippet of my life, some may recall that I was diagnosed with Stage IIIA NSCLC (adenocarcinoma) in early 2016, at age 40. I had a brief smoking history from my early 20s and was able to easily quit. I don't know whether addiction is *allowed* to be easy, so I can't say whether it was ever an addiction. I do know that my doctors did not consider me high-risk for lung cancer prior to my diagnosis. My father (not biological, but the one who raised me), was a life-long smoker. He tried so hard to quit, on several occasions. He was successful for periods of time, as well. He was diagnosed the year I moved out of state, just after Thanksgiving. He came up to visit with my mom, just prior to his diagnosis, and he'd been sober for many, many years, but we gave him codeine syrup and whiskey because he was in so much pain from the hacking and the tumor that was resting on his spine. He couldn't sleep lying down, because the pressure was too great to breathe. I visited him at Christmas, just a month later, and he told me that even if he'd known in hindsight he would get lung cancer, he wasn't sure he would have been able to quit. And was he frightened of his disease? Of course he was. He was terrified. It broke my heart. He died the morning after I returned home. That was sixteen years ago. I hate that some diseases are used as punishment for "bad behavior" . That needs to change. There are at least two life affirming facts I want to become prevalent in our culture. 1. Nobody deserves to get lung cancer. 2. Nobody deserves to die from lung cancer.
  21. Meloni

    Ct scan

    Apologies for the delayed response. We met with the oncologist this morning. The PET scan showed no signs of cancer other than the lymph node that's already been confirmed.He suspects cancer cells may have been lurking in this lymph node the entire time I've been treated, but it was too small for detection (my lymph node was at 9mm when I found it--he wasn't sure it would light up on the PET scan. He was glad it did, because it provided more confidence regarding no light-ups w/rest of body). It also means the chemo I received was either completely ineffective or only slowed it down. So of course, if they do more chemo, it will be another type. My MRI was rescheduled for this WED (Migraine; I was willing to participate, but they didn't want me to puke on their machine--whatever). My colonoscopy is on March 2nd. He doesn't expect anything related to the lung cancer to be found, but he wanted me to be seen. (41 is the new 51?). My Foundation One test results are due back on Feb 27th. The oncologist is meeting with his chest tumor board to discuss the best course of action for this lymph node. It's the supraclavicular node (right side, same side as the primary cancer). Surgery and / or radiation, will be discussed with the ENT surgeon, and the rest of the board. I will now be delving into that type of surgery between now and March 3rd (next appt w/oncologist), because I have no idea what the studies are, outcomes, yada yada, and to be honest, my brain is full at the moment. I really appreciate the feedback, the links, and everything. Thank you so very much. <3
  22. St. Michael, I had a lobectomy (right middle lobe) in May this year, plus removal of some lymph nodes, after radiation and chemo. I was SUPER nervous, but my surgeon and his team were amazing and did a great job. It takes a good amount of time to recover, but your mom will probably have good pain medicine afterwards that will help. Did they give her the little breathing tube to practice with yet? That's REALLY important to keep up with, even if she feels silly. Make sure she practices beforehand, and DEFINITELY make sure she practices regularly afterward. I've heard good things about Dana-Farber. I'd definitely be checking it out if I were closer. Meloni
  23. Jose,

    I am so sorry about your mother's diagnosis. I see she has started chemo and is experiencing some nausea and vomiting?

    I was diagnosed with lung cancer earlier this year, and while on chemo, nausea and vomiting were the side effects I hated most. The cool thing is, my doctor and ARNP were very interested in making sure the side effects were as controlled as possible.

    If Zofran is not sufficient for your mother, you can ask her doctor about additional anti-nausea treatment. I was eventually on several. 

    Also, I went in several times for "hydration therapy" between chemo treatments. They gave me additional fluids, extra steroid (I struggled with eating), and extra nausea med, all via my port. This helped me get through the extra nasty days of chemo.

    Regarding other ways to help your mother: is she mobile? The doctors say how important it is to move around, even when we don't feel like it. A short walk here and there, etc. One thing that felt good to me was yoga. I wasn't good at it. I didn't even really "do" it. I just flopped around on the mat like a fish out of water for a few minutes, and then rested when out of breath. But the stretching felt really good.

    Be careful with supplements. Tell the doctor prior to your mother taking them, so they can make sure there is no interaction with her current treatments. 

    Take care. I found hope when I found the people at this website, and I am glad you are here, although sorry you needed to find us. 

    God Bless,

    Meloni

  24. Hello All, I haven't been around much since my May 2016 surgery, which went well. Oncologist ordered some more rounds of chemo, which for some reason, is making me sicker than the pre-surgery chemo did. I've also got another brain MRI this week, and I have no idea if that's routine or if they have reason to check for something more sinister (I'll ask ARNP on Tuesday). As usual, even with my prepping, it can be tough to keep up with this cancer stuff. Boundaries Question Bluntly phrased, how did you survive treatment AND cancer AND all of the *helpful* people violating boundaries without permanently destroying relationships? I'm a pretty sunshine-y person who enjoys her alone time. Cancer has taken a lot of control out of my life. My mother-in-law has insisted on being present for large portions of my chemo, and my husband endorses this. I find it exhausting, because I can't just be myself. I feel like I'm expected to play alternating roles of *grateful cancer patient* and *daughter-in-law hostess*, when really I would just like to take a nap when I'm not feeling well, and maybe see a friend when I have a chance (and not be obligated to take my MIL). Our son came home sick from Boy Scout camp this week, and although he's 15, he spreads germs like a 3-year old. My husband and I had repeated conversations with him about hand washing, cough protocol, etc., but he was being super dense, and I snapped at him. Long story short, my MIL and I had words (she felt I was being too hard on him, and then became upset when we wouldn't cancel his BS backpack trip so she could spontaneously take him home with her). She left in tears, telling my husband "she would not stay where she is not wanted". Haven't heard from her since that time, although I'm sure she got home safely, or my FIL would have called. Thank you for the vent.
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