New here: Looking for others who have NSCLC and information

Thanks, I know...Shingles! At first, I thought I got scabies in the hospital- But I guess my body is so weak I got shingles. So far it isn't too bad.
Thanks for the kind words-
April

Hi Lisa,

Thanks for the site info I already checked it out, lots of information. I may be stage lV or III it depends on the results of the fluid I had in my lungs. It was such a small amount the surgeon was going to try to get some and send it with the rest of my samples. The NP didn't say anything about my fluid just my lymph nodes. Are you on ALECENSA or a different targeted therapy? There was some talk of my taking ALECENSA pre-surgery, but the team went for chemo first. It is nice to meet another ALK patient. I will let you know what the oncologist recommends next, I live in California I and am getting treatment at Stanford.
April

Hi April, I'm glad you found Connect. This is such a hard time, but you'll get through it. There's so much information, it can certainly be overwhelming. The stage of your cancer can have an influence on what type of treatment your insurance may pay for, so it can be important. There are some clinical trials that are giving alectinib in some earlier stage ALK cancers. But I can't offer too many details there, other than it may be something to ask your oncologist about. If the oncologist determines that you are stage four, then a targeted therapy/TKI (alectinib, lorlatinib, etc.) is likely appropriate. You should be in good hands at Stanford!, they certainly see other ALK patients, and should likely have a team approach to determining what's best for you.
I am stage IV, 53 years old, and have been on alecensa/alectinib as my first line treatment (my only treatment so far). I've made it 3 1/2 years with no signs of progression. Some of the original clinical trial patients are still taking alectinib without progression (~8 years), so there is HOPE. Some oncologists are having patients take loratinib as their first drug now too. Both meds have their own list of side effects, so it really is a personal decision. Both are effective and protect the brain.
Don't hesitate to reach out with questions, I'm happy to help where I can from the patient perspective (I'm obviously not a doctor :)).

Hi Lisa, thank you for all that information. I think I told you I am 56. The local cancer care where I live wanted to go straight to Alecensa and then surgery. But I did not want to have surgery here at my local teeny-tiny hospital, so I went to Stanford for a second opinion. The surgeon at Stanford wanted Chemo first- then surgery. I do trust my team. I try not to read too much online then I start to second-guess my treatment plan. Are you having side effects from the alecensa? I am glad your cancer has not spread. I know treatment is evolving rapidly for ALK patients. Do you do a scan every 6 months or so? I really want to return to work as I am the main wage earner in my family and my work provides our health care coverage. I am on medical leave and my work told me to take as much time as I need. I am getting my full salary until mid-December. I really appreciate all the information you have provided. thanks, april

Hello. I’m new here. I found out I have lung cancer by accident. I’m not sick or feeling bad. I had a lobectomy last week and am home recovering from that. I saw in my patient portal that one of the 8 lymph nodes tested positive for cancer. I’m devastated. I surgeon restaged me from Stage 1b to Stage 3a. So I went from “surgery is curative” to something else. I haven’t met with the oncologist yet but I’m worried. I also have an autoimmune disease (Lupus) and I think that will limit my options. This is all so overwhelming and I’m scared now that it’s spread. My PET Scan from a couple of weeks ago didn’t show any lymph nodes being affected and my bronchoscopy didn’t either, which makes me fear it spread in that short time and may be spreading as I type this. Just needed to get that out of me. They did get all of the tumor so at least there is that.

April (@aprilradek), I'm glad you have a good team behind you, it is important to have trust in the people that have your life in their hands. There isn't one treatment plan that fits everyone, so what you see on-line can be misleading sometimes. That's why we have personal doctors, to weed through our own details. Try to trust your decisions once they are made, it's done, no going back, only forward. 🙂
I'm doing well on the Alecensa. Over time I've experienced different side effects, but consistently have some GI issues, fatigue when I do too much in a day, and some forgetfulness. It's all manageable, and nothing that would make me look at a dose reduction or a different med. I'm still active (at the YMCA, pickleball, hiking, walking), and I feel good most days. I have blood work and CT scans every 4 months, and a brain MRI once per year. The meds can be hard on your liver and kidneys, so they like to do regular blood work.
I did continue to work full time for the first two years. I had a fairly demanding IT job. I decided to stop because I just didn't feel as sharp or effective at work, and it was time. It's given me more time to slow down and deal with the emotional side of the diagnosis. I've found new joys, and don't regret it at all. A lot of people continue working though, it's a very personal decision, and usually quite manageable once you get past the time where you have a lot of appointments. Take the next two months to get stronger, and to find out what your next steps will be. Of course, talk to your doctors, but I'm guessing you'll be able to return to work when you are ready. I'm happy to help! Thanks for reaching out.

Hi dragonspark,

It is scary and overwhelming.
I am also stage 3a, I had a lobectomy on Sept 29th and I am recovering. How is your recovery going? I had 10 lymph nodes removed and one had cancer. I am also waiting to talk with my oncologist to see what the next phase of treatment will be. Apparently, PET scans are not 100% accurate. My cancer-positive lymph node did not light up on my scan. And the 3 that did light up all turned out to be negative for cancer. I don't think your cancer spread that fast, I have been told it is slow-growing.
When are you meeting with your oncologist?
april

DragonsPark,
Have they classified your cancer type? I became aware of mine in a routine chest ct and since it was tiny and not very impressive we just watched it every year for four years. This year it grew a bit though was still less than 1.5cm. But surgery to remove it 4.5 mos ago revealed it was Adenocarcinoma 1a. So they took my left lower lobe and a bunch of lymph nodes which tested negative. Clearly my cancer type grew slowly. That doesn’t mean yours would but if the hot node in question was only revealed to you in patient portal, I would definitely call my doc for clarification.

Hi @dragonspark, I'm so sorry that you had to come here, but I'm glad that you did. Please know that everything that you are feeling is normal, it's such a scary time. This is a good/safe place to vent those feelings, because we've all felt them. If you can, try to focus on what you know now, and not the long list of what might be. Your Lupus may impact treatment, but it may not, depending on what's driving the cancer. Like the others, I'm wondering when is your appointment with the oncologist?

I don’t have an appt with oncology yet. I still have my chest tube in and hopefully get it out tomorrow. I had a fairly large air leak, so they sent me home with the tube for a few days. My surgeon said once that’s out he will drop the orders for a brain MRI and a consult with oncology. So I don’t know yet when I meet with them. I’m hoping soon for both appts.