[It's been a minute...]

Tom - I told Super Doc that HE had to call my mom and tell her we were changing the frequency. 

 

[It's been a minute...]

I've stopped by here and there the last few months without much time to comment. Work slowed down so I'm reclaiming my time. First, I had an appointment with Super Doc last Thursday and I remain NED. Because I've been NED almost 5 years, Super Doc moved me to annual scans. I'm not going to lie; I'm a little nervous about that.

I was floating along on my good news until Monday morning. A classmate from junior high/high school/college died as a result of her stage IV lung cancer. She was diagnosed after me with the exact same type but she just couldn't get past it. There are definitely a lot of why questions running through my head. A few classmates reached out to me because they knew her death would hit me differently. Just another loss to cancer from our small glow-in-the-dark cancer-causing hometown. 

I leave for a 10 day cruise next week with another friend from my hometown and yes, she is also dealing with cancer. Anyway, it's a long overdue trip for us. We kept saying we'd go next year, and then the next year. Last fall, her treatment put her in the hospital 3 times and she nearly died the last time she was in the hospital. We booked soon after!

 

[Newly diagnosed a few days ago]

Hi - 

Glad you found us. You'll likely hear from a couple of other people who will provide links to great information. I don't have answers to your question, but I offer hope. I was diagnosed with stage IV 7 years ago. I'm still here. 😁

[Lung scan and 2nd sniff test tomorrow]

Hi  - 

Your surgeon or family physician should be able to refer you to an oncologist. You definitely need an oncologist because they will have the most knowledge to share regarding your diagnosis and treatment options. 

[Another journey begins….]

Hi Melinda - 

Sorry for the reason you're back but we're glad to have you. A lot has changed in the last few years - lots of new information out here. Please let us know how we can support you.

[Husband diagnosed yesterday]

Kristin - 

Glad to hear there is a diagnostic plan in place. The waiting and worrying is the worst. If you haven't already, get a notebook to write down the questions that pop up between now and then, and those you will undoubtedly have going forward. I always took a notebook to see Super Doc - that was the only way I could remember my questions each visit.

Now...step away from Google! Those survival statistics are not reliable for so many reasons, mostly because they are out of date. We've had so many new treatment options in the last few years. My 5 year prognosis at time of diagnosis was 18%. That was nearly 7 years ago.

Keep us posted.

[Diagnosed in December 2022]

Welcome to the club no one ever wanted to join. You'll soon hear from several others on the forum who have a lot of great advice to offer. I'm so happy that you have a great support system - it really does make a difference. We have a lot of long term survivors on here. Their stories got me through this and will help you, too. Keep us posted on your progress.

[NED!]

Congratulations!! Excellent way to end 2022 and kick off 2023.

[I'm also still stable!]

Received my latest scan results a few days before Christmas. I'm still NED - been that way for 4 years. Super Doc says if my next scan (June) is clean, I'll get moved to an annual scqn. If you had told me in August 2016 that - first - I'd still be here and - second - that I'd be NED, I wouldn't have believed you.

If you are newly diagnosed, please know that this disease can be survived. I'm proof. 

[Help! I cant stop]

Step away from Google. While there is some good information, most of what you'll find is scary and confusing and overwhelming. Please keep us posted.  

[Three Year Cancerversary]

Judy - 

Congratulations! Such wonderful news!

[Persistent tumor]

Hi Angel - 

As the others have said, you have a lot going on with this diagnosis and I'm sorry. Everything about this damn disease is so frustrating and scary and overwhelming.  It's hard not to be overwhelmed so please keep coming back to ask questions, vent, lean on us, all of it.

[Good PET Scan Results]

June - 

It's great to see that doctors are finally taking aggressive steps for stage IV patients. I'm stage IV, diagnosed 6.5 years ago and NED for 4 years. I was fortunate (??) that my biopsy was negative and plans were made for me to have a lobectomy. Super Doc said that had they known I was stage IV, they likely would not have performed the surgery. I feel like I'm the exception, not the rule. Surgery followed by chemo, radiation, and SBRT gave me a fighting chance.

Please ask us anything. We're here to support you.

 

 

[NSCLC stage lv - first line treatment didn’t work]

Hi - 

The last treatment I had was in 2018 and was SBRT. I've been cancer free (as stage iv) for 4 years. That said, I'm going to respectfully disagree with the physician's wait approach for radiation. An old high school friend was diagnosed with stage IV after doctors found a spot on her hip. The radiation eliminated the spot and the pain she was having. Radiation can knock back/knock out the spot on your hip, perhaps even inhibit a return. 

Keep asking questions and pushing for answers. Also, definitely keep Michelle's insurance advice in mind. I'm a 31 year veteran of the industry; the squeaky wheel gets the grease. Always!

Please keep us posted and feel free to ask anything. 

[New to this site]

Hi Rosie - 

I'm sorry about your diagnosis but glad you are here. This forum was the first place I turned after I was diagnosed. So much has changed over the last few years - so many new treatment options now. I was diagnosed with stage iv in February 2016 and had 2 recurrences. Treatment was rough but it worked. I've been cancer-free for 4 years now. I don't have kids so I can't truthfully say that I understand what you are feeling, but I am only child of an only child. My first thought in all of this was wondering who would take care of my parents. I cried, cursed, and had a few breakdowns along the way but I also leaned on others. That's why we're here for you - we've walked your path. Ask us anything. We're here for you.

[NED Is a Nice Way To Start the Day]

Congrats on the NED to both Lou and Judy! I love seeing these updates.

[Radiologist vs. Oncologist]

Great news - congratulations!

[Masks are doing me in]

I too have had some issue/aggravation with the N95 masks so I appreciate the info on the KN94. I have two trips coming up where I have to fly so I want to be prepared.

[The other side of a diagnosis]

When I was diagnosed with cancer, my friends/family were by my side every step of the way. They offered help, went with me to chemo, listened when I cried, brought us meals. In short, they were awesome. I had so much on my mind that I didn't think too much about what they were thinking. I wasn't tuned in to their fear for me. 

Two weeks ago, my oldest friend called to tell me she has stage 3 kidney cancer. We discussed her treatment and I asked the practical questions that cancer survivors think to ask. But once we got off the phone, my jaw hit the floor. I just sat there dumbfounded, not knowing what to do. It was odd being on that side of the diagnosis. I'm still in shock but know that she'll be okay. She has a treatment plan and a great support system. 

I'm tired of this cancer nonsense.

 

 

 

 

 

 

[Finally starting treatment]

Hi Jill. First - you have to be your own advocate. I carried a notebook for 2 years with questions and notes. My oncologist expected me to break out that notebook in the early visits. 

Which chemo drug(s) will you take? I took cisplatin and alimta (pemetrexed) for my first cycle. For this round, Super Doc prescribed two different anti-nausea meds that I could alternate so I didn't really get a chance to get nauseated. My side effects are/were neuropathy and tinnitus. The following year I took carboplatin and taxol, along with radiation. I lost my hair but losing hair during July in Texas isn't too bad.

I highly recommend this site - it's run by the Cleveland Clinic and provides side effects and therapies to address them for most chemo treatments.

Lean on the wonderful people on this site. We're here for you.

[Hello to the community from Samantha]

Hi Samantha - 

My feelings brought me to Lungevity six years ago and it was an excellent choice for me. I can come here to ask questions, vent, worry, etc. It's not that my support system wouldn't listen - they would. But they don't understand all that I've gone through. I was diagnosed 6.5 years ago (stage IV) and have been cancer free for almost 4 years. This diagnosis isn't the death sentence it once was.

If you haven't already seen it, there is a forum just for caregivers. Your family might find it useful for their questions.

 

[Well, just damn.]

I'm late to this part of the conversation. Has anything changed with your insurer? You may have grievance appeal options and/or you can file a complaint with your state's department of insurance.

[Mayo Clinic Wait Times for appointments]

Kamoto - there was a tumor on my thyroid per the PET scan. I was told it was rare for lung cancer to metastasize to the thyroid. Ha! I had metastatic lung cancer in my thyroid AND thyroid cancer. Fortunately surgery addressed the thyroid issue. It's never boring, is it?

[Chemo kicking me down hard]

Lily - 

I agree with Lou - talk to her or find a new doc. If you aren't 100% happy or comfortable with your oncologist, it makes it that much more difficult to ask questions or trust the treatment plan. 

I've also had Carboplatin. My biggest side effect was hair loss but it didn't seem to affect my hearing like the cisplatin did.

Keep us posted.

[NED!]

I received my 6 month scan results today and I'm happy to say that I'm NED. I've been NED for almost 4 years. Scanxiety still gets the best of me - no sleep last night. In the past, my results were not available to me online but there's been a change at Super Doc's office so they're posting online now. I got the alert last night but I couldn't look! Maybe next time...