Meloni

I received this message as well. Glad the scammer was banned.

Hi Nagla, Just following up (over one month later), that I emailed that slide show attachment in a PDF file on Feb 22nd. I hope you were in receipt of it. Let me know if you need it to be resent. Sincerely, Meloni

Hi Nagla, I would be happy to send you the slideshow. I will need a few minutes to to prepare a meal for my family, and then I will have it sent to you. It will come from my email address [email protected] Mel

KatieB, I'm a Stage IV lung cancer survivor who is currently trying to recruit volunteers who are passionate about bringing lung cancer awareness and education to my area, Spokane, WA. I have been communicating with Diana A. to organize a Breathe Deep event. Would the email address you provided ([email protected]) let me know if there are volunteers on file in my area who are committed to our cause? Best, Meloni Armstrong

Hi Nagla Mohammed, I have ALK+ NSCLC and am also on Alectinib. I'm glad you are experiencing some relief of symptoms, and look forward to hearing the results of your first PET scan. I hope the results indicate the medicine is destroying the cancer. - Meloni

Last month I watch and listened to oncologist Dr. West discuss the science of lung cancer rearrangements (focus ALK), and the importance of testing for them. I was able to capture most of the slide show for visual reference later. The slideshow is too large to upload, even when compressed, but if anyone would like me to email a copy, please let me know. - Meloni

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

Hi LJulieMoss, I'm in Spokane, WA as well. Do you by chance use Tri-Care (military) insurance? Meloni

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

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.

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

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

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

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.