Hi Colleen,
Yes, 25 years is sure good to hear. It gives hope to all of us. That kind of time is out of reach for me but it is good to hear she is still going.
For an update, I am right at 13 months since diagnosis, is that when people start counting? I am feeling pretty good. I had six weeks of chemo and proton radiation in March and April of 2022. I currently just had my 11th out of 13 immunotherapy sessions. My immunotherapy drug is durvalumab and it made my thyroid stop working. It does that to about 20 percent of patients. So I just started taking oral thyroxine and hoping that goes well. I just had a CT scan and my care team is happy with the way things look. I am stage 3B with a main tumor and a couple lymph nodes involved. I didn't have any new spots or anything overly concerning this time and that feels good. I'm hoping to keep going.
I hope everybody keeps going as well. I find it helpful to hear from others on this platform. Thank you for letting us know and for reaching out.

Hello everyone, I’m in good spirits and happy you reached out to me…I just saw the results of my recent ct scan post treatment on my portal and it says everything is stable and no new nodules, yay…need I tell anyone how happy I am, amen. I’m a bit worried about speaking with the surgeon..allow me to explain…last June 23, I had a treatment for a cancerous nodule in the right lower lobe.. I spoke to the surgeon a few days before and he was positively negative with me…first he carries on about another nodule is going to turn…of course I asked if he could remove it with the other one but he said no I can’t with no explanation.. I want to know why he said we’re trying to get you to 73?? I just froze… why would you say this to a person going for a treatment which is a wedge is removed instead of a lobe…I have already had a lobectomy in August 2020. I’m going to stop now before I write an essay. I shall ask the doctor and let you know how it goes, take care and stay uplifted

Thank you Colleen

@frouke @nonobaddog and @lijda. - Good morning and thank you for reaching out to me earlier. Due to my home situation, as COlleen has said I have had to step back from full-time Mentoring for right now and take care of my husband. Up until this year, he has seen me through all 25+ years of my lung cancer journey and now I owe him the same.

I won't be able to respond to each case here but the main thing that I want to say is that having a positive attitude didn't come easy or in short order. Some of it is intrinsic I think. I was one of a pair of twins and we fought over everything. I had to win and it seems in everything I do now it is true. Another thing is that there are many depressing factors about having cancer of any kind including the country's health care system. So those have to be overcome.

Having good doctors who are encouraging and a support system behind you is extremely important. I find that the main thing is persevering, plodding on day after day, and feeling crummy or discouraged. I don't think that anyone can feel positive or upbeat 100% of the time. Right now I am sitting on my bed feeling terrible from having to take prednisone because I have pneumonitis as a result of SBRT from last October. I had 2 lesions zapped from my right middle lung that was very close to my heart. It was my 3rd SBRT. I have not had any other targeted treatments. A long time ago I did have chemo and my first two cancers resulted in total lobe removals.

I do hope that you will continue to support each other as you have. I will pop in from time to time and I miss everyone. I spent a lot of time googling for answers but interactions with real people can't be replaced. I think of you all.
Merry

Hi, Colleen, First of all, I am pleased to hear that news of Merry isn't the worst although caregiving, for both the carer and the cared, isn't, of course, the best.

Second, here is an update, as requested. I am doing fine! I am very comfortable with my decision not to start targeted treatment (Tagrisso for EGFR mutation) until I become symptomatic or something of concern shows on the 3-month scans. The January CAP (chest/abdomen/pelvis) scan showed the usual slow growth of some lung nodules (out of the 20 to 30 lung nodules I have); the brain MRI was fine.

My key questions for others with multifocal lung cancer are:

(1) do you have any metastases beyond the lungs? (I really don't like lumping bilateral lung lesions with metastases to other locations such as lymph nodes or brain or bone etc etc. By definition, bilateral lung lesions are considered metastatic and, therefore, stage 4, but I just don't think bilateral lung lesions are in the same league.)

(2) Based on molecular testing, are you doing targeted therapy to treat the specific malignancy identified by the molecular testing?

I am eagerly awating results, due in October, of the Mayo Clinic clinical study of multifocal lung cancer; and I thank this forum for bringing it to my attention.