Introductions

[Briefly_Endless]

Hi ya'll,

I am new here, but not new to lung cancer. I am trying to finish my profile but it will take awhile because it is hard to remember a decade worth of treatments without consulting my charts. I was diagnosed with SCLC ltd back in 2008. This Thursday my family and I celebrate 14 yrs of life with cancer. I call it my second birthday. Because once you are diagnosed , you become a new person with new normals and are constantly changing from treatment to scan to treatment.

I am currently on Keytruda (30 months) and am considered "stable" . I don't really want to stop taking Keytruda unless it stops working.

When I was diagnosed , I could not find ONE person with small cell near me or online and it was scary. I had just turned 41 and had a young daughter to raise.

Thankfully so much is changing with treatment and even the social stigmas are not what they use to be. I look forward to meeting and chatting with you guys and gals!

Cheers,

briefly_endless

[Denzie Moderator]

Welcome!

Your experience is truly inspirational. Looking forward to hearing more from you.

[NavyVeteran Ambassador]

Good Morning,Terrific that your recovery is going well. What was your treatment protocol prior to Keytruda?

Surgery?

Radiation?

Chemotherapy?

Other?

Thank You,

NavyVeteran

[Briefly_Endless Ambassador in reply to NavyVeteran]

Hi, My first treatment was concurrent radiation with cisplatin/etoposide. When that didn't work they tried two more chemos that I reacted badly to . They also gave me PCI (prophylactic cranium irradiation) that fried what few brain cells I had.

I then had my adrenal gland removed with cyberknife (targeted radiation) to the adrenal bed. I had a very painful tumor later next to my spine and that was zapped and thankfully that helped tremendously. I have also been on oral chemo ( a form of etoposide)

I finally talked my doctor into trying immunotherapy in 2019. I have been on Keytruda and doing very well since. I know that sounds like an endless stream of stuff but it was spread out over the last 14 years.

Sorry for writing a novel

😆

[AlyonaD in reply to Briefly_Endless]

Hi -- you are a real inspiration to me! Had they found cancerous cells in your brain prior to PCI? I believe, back then it was a part of protocol regardless. Nowadays, they give you a choice; to do it or have MRI every three month instead (and do PCI only in case cancerous cells are found). Had you noticed any cognitive problems after your PCI? I have chosen not to do PCI and doubt if I made a right decision.

[Briefly_Endless Ambassador in reply to AlyonaD]

AlonyaD-

I had it as a preventive treatment and they did give me a choice . My radiologist mentioned since I was so young at the time (41) that it would have a negligible effect and I decided to go for it. I am terrified of MRI's by the way. Funny, huh? But don't fret over whether you made the right choice or not. We can torture ourselves with "what ifs" and "should haves" . You made the right choice for YOU at the time!

[AmyKamp Partner]

Welcome! We are so glad you are here!

[Gutsy-fighter]

I am finding the same thing about no-one with SCLC on any community boards. I am VERY interested in hearing more of your story---congrats on your successful adventure these past 14 years!

[Briefly_Endless Ambassador in reply to Gutsy-fighter]

Hi there, and thanks! All the best stories have plot twists! It's good to meet you, Gutsy

[AlyonaD]

Hello -- when you were first diagnosed, was your cancer at extensive stage or localized?

[Briefly_Endless Ambassador in reply to AlyonaD]

the doctors thought it was limited but they couldn't get enough fluid of my pleural infusion but it kept popping up in other places so I guess it was never "limited" like I thought.

[Gutsy-fighter]

Very glad to hear your story!! Hoping mine will turn out like yours!

[Hidden]

It’s a real breath of fresh air to read about your amazing stability for that duration of time. Long may it continue.

My mum is at the start of her SCLC journey but initially diagnosed as NSCLC in 2020 at 52 which has laterally transformed into small cell (we are lead to believe this is quite rare). She has just started her chemo journey with carboplatin & etoposide with potential to add in immunotherapy at a later date. I pray every day for a successful a long lasting outcome for her, she is my rock ❤️..

[Briefly_Endless Ambassador in reply to Hidden]

I will pray for your mom too! ((Hugs))