Meloni
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Posts posted by Meloni
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Hey Friends,
I can't recall where I left off, so here's a quick rundown: after treatment concluded late last year, I discovered an enlarged supraclavicular lymph node (late January). It was scanned, biopsied, and tested positive for NSCLC. They sent it for genetic testing, and two results included ALK+ and a TMB level Intermediate. The lymph node was surgically removed; however, something about the lymph node in the pathology report indicated cancer may still be present. The Tumor Board did not feel that radiation therapy would be of benefit at this time, and at the moment I'm taking Xalkori, which is a TKI approved for ALK+ NSCLC.
Like the previous chemo, I meet with the oncologist twice per month to review side effects of Xalkori and check blood counts and liver health. He has bumped up my scans to full PET/CTs, and they will be every 3-4 months, instead of every 6 months. My PET is next Wed, and we meet next Fri to discuss results. I also meet with the Thoracic Surgeon the following Monday, as he's requested to be involved with scan reviews from here on out.
The oncologist had referred me to a neurologist months ago, because my migraines had severely worsened post-cancer treatment and head MRIs indicated nothing was going on upstairs (heh). Stroke of luck, they called and bumped up my appointment by more than a month, and I was able to get in this week. I really like him and his staff. He has some new tricks to handle migraines I've not used before, and he'd already reviewed information about my NSCLC, such as my brain scans, which I really appreciated. He said the doctor who read them was really talented and my scans looked really good. He also said (I asked), that if the cancer does spread to my brain, he would not be the specific neurologist who treats me (it's not his specialty), but if I have any issues that worry me, I can call or come in and they can evaluate me and get me a scan ASAP.
One last thing: people whose NSCLC is ALK+ are raving about certain oncologists who are also lead researchers in the ALK realm. One is Dr. Alice Shaw, in Mass. It looks like she does a lot of 2nd opinion work, and will review things in such a way where your home team is still the treating team, but she's more of an expert consultant, I guess? Anyway, I approached my oncologist and asked whether he would be interested in her input, if I can arrange a 2nd opinion. He said if we can swing the cost (we have Tri-Care Prime, so going to see how much, if any, they will pay), he'd be very interested in hearing input.
That's what I have for now. Sorry for the long post!
<3
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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!
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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
- Susan Cornett, Tom Galli, BridgetO and 1 other
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Hi LJulieMoss,
I'm in Spokane, WA as well. Do you by chance use Tri-Care (military) insurance?
Meloni
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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
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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.
- Tom Galli, Mally, Julie in SoCal and 1 other
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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!
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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
- Mally and Julie in SoCal
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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
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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.
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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
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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
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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
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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
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On 3/5/2017 at 9:25 AM, J L W said:
I was recently informed that ai have a .9mm lobulated, spiculated, non-calcified nodule in right lung found on CT. Radiologist called it highly suspicious. Doc ordered a PET-CT and it was performed 3/03/17. Waiting on results. Of course I'm interested in the results, but Doc is out of the office all week. Anyone start out this way? Not asking anyone to diagnose, just curious about your experience.
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
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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
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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.
- Mally and Susan Cornett
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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
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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
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Hi Jg_miller,
I'm so sorry about your lack of response. I recall your post from earlier, and I believe I unintentionally hijacked your thread and responded with my own issues, which was not only rude, but completely unrelated to Opdivo!
I haven't taken Opdivo; I've only seen the commercials. My doctor recently sent my tumor tissue out for genetic testing, and I jokingly mentioned that I notice all the crazy commercials *now* that I have lung cancer. He said that's part of it, but the marketing *is* stronger for lung cancer this past year due to recent developments. I find that very hopeful.
Did you receive the genetic marker testing? Also, did your doctor test for PDL1? My doctor was talking about that, and so I've only recently learned about it. I'm not trying to hijack your thread, by the way; I thought this might be another means of keeping the thread active.
I'm very interested in hearing responses from others who have taken Opdivo.
Meloni
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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
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Thank you Tom.
Biopsy confirmed cancer. PET scan and MRI next week, and follow-up with oncologist on 20th to review results and plan of action.
The oncologist will be running tests to determine genetic markers on the cancer, if any.
I'm also headed to the GI Butt doc for more good times. However, that visit isn't required to occur before my next visit with oncologist.
Meloni
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Treatment Update - Upcoming Scan
in MEMBER UPDATES
Posted
Hello Friends,
I had a head MRI last Wednesday, and Thursday evening the oncologist called to inform me there is a spot in my Thalamus that was not present on my Feb 2017 scan. A biopsy would be required to confirm, but they believe it likely represents metastasis of the lung cancer.
I'm waiting (always the waiting game), for the neurosurgeon referral to be approved by insurance. My insurance has never given me troubles, I just hate the lag time between discovering new issues and getting those new issues treated.
My oncologist indicated the lesion is small (10 mm) and treatable. Just waiting to hear from the neurosurgeon so I know what to expect in terms of treatment, follow-up and monitoring. Want to know about side effects and risks, too, of course. Apparently the thalamus is a pretty important little unit in the brain.
Meloni