My SCLC Diagnosis

By Alyona

1 min read

I am 69 now and was diagnosed with Small cell Lung cancer in December 2021, extensive stage.

My treatments

I started chemotherapy and immunotherapy at the end of January, 2022. They were successful, and now I am on immunotherapy one in three weeks. I get PET scans and MRIs every three month. I have had thoracic radiation (brutal experience) and decided to stay away from whole brain radiation.

SCLC and clinical trails

Knowing sclc statistics (in 93-97% of cases it comes back within a year), I am desperately looking for clinical trials in order to prolong my cancer-free period, and cannot find anything. Unfortunately, there are very few trials for that, and I have to wait for cancer to return to start any trial (and there are not that many of them). I would like to connect with people who have the same diagnosis and hear their stories.

Would you like to share your SCLC story? We'd love to hear from you!

Share Your Story Today!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The LungCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Richard Faust Community Admin
Hi <inline-mention username="Alyona" user-id="4731653"/>. First, let me say that it is great to hear about the success you have had with your SCLC treatment. Second, you may already be familiar with this, but, in case not, I want to share with you this page from the National Cancer Institute on SCLC clinical trials: <a href='https://www.cancer.gov/about-cancer/treatment/clinical-trials/disease/small-cell-lung-cancer/treatment' target='_blank' rel='noopener noreferrer ugc'>https://www.cancer.gov/about-cancer/treatment/clinical-trials/disease/small-cell-lung-cancer/treatment</a>. Your medical team should also be able to assist in looking at options, should they prove necessary, which fit your case. Please feel free, if you like, to keep us posted on how you are doing. This community is here for you. Best, Richard (LungCancer.net Team)
1. Alyona Member
 <inline-mention username="Richard Faust" user-id="2363697"/> Thank you! I know this site, among others, but have not checked it recently
Chasetwins Member
Hi Alyona, myself diagnosed in April with Smlc.. extensive. Just finished chemo onto immunotherapy every 3 weeks. Last two chemo sessions they didn’t have the desired chemo meds due to national shortage. I came across your post and am checking in with you to see how you are. 
1. Chasetwins Member
 Right now my next steps are immunotherapy. I have an appointment today which I am sure new scans will be ordered since it was the end of chemo last week. I will have immunotherapy at least until May I believe. Unless something changes in the meantime. Trying to stay hopeful... some days are harder than others. There is not a lot of information on stage 4 SMLC that is inspiring. I came here hoping to find some hope. All the positive stories involve non small cell :/ 
2. Alisa Moderator
 <inline-mention username="Chasetwins" user-id="8580717"/> Sounds like a good plan, I have heard from others that small cell can respond nicely to immunotherapy. I understand the hard days, I have them, too. I think anyone in our situation will have good and bad days. I am attaching a couple of links below to articles that I hope help. Thanks for keeping in touch! ~ Alisa https://lungcancer.net/living/sclc-survivor-stories https://lungcancer.net/living/sclc-virtual-group
Alyona Member
Hello -- After 5 month of immunotherapy my cancer came back. As prompted by my oncologist (he said there was not much he could do), I managed to get into clinical trial at MDAnderson Cancer center. Thank God, I live in Houston. Since February 2023, I am undergoing a new kind of treatment: IMMU-132. It did show some success with breast and prostate cancers, and now they are checking if it works for SCLC. It feels like chemo, but it is the third type after chemo and immunotherapies. Let me know if you need more info. Good luck with your treatment! Maybe, you would find yourself among those happy 6% of SCLC patients who get cure after first chemo. I wish you all the best. Alyona
1. Alisa Moderator
 Hi <inline-mention username="Alyona" user-id="4731653"/>, I'm sorry to hear your cancer came back but you are in good hands at MDAnderson. Thank you for commenting and for being part of our community. Wishing you all the best with your trial, please feel free to update us and let us know how you are doing. Warmly, Alisa, Lung Cancer Team Patient Leader
2. Chasetwins Member
 I am so sorry the cancer came back! I am however glad you were able to get into a clinical trial...and that you are here with us 😀 I was wondering what would be next after chemo / immunotherapy. I am almost afraid to ask. My lung cancer spread to my liver & bone. The Dr while I think was trying to be optimistic was not exactly reassuring that I would ever live cancer free. The conversation felt much like I was playing a game of chance and could possibly be on borrowed time. As I mentioned above, there is not much positive data for extensive SMLC.., believe me I have been searching! I know these immunotherapies are new so I just have to give all my hope to them! I will be on Tecentriq, I was told at least a year of treatment. Please check in when you can in the coming months. I would be most interested in your well being as well as how your trial is going. Much Love ~ Michelle ~
Alyona Member
Michelle -- please let me know what your scanning results would be. Not much info about SCLC, you are right. Not many advanced treatments, neither. But there are some. My MDAnderson trial lead oncologist said there is a very promising clinical trial at Dana Farber in Boston, but you need to live nearby. Where do you reside? 
1. Chasetwins Member
 Funny I am originally from the Boston area however I now live in Florida. Moved here December 2021. I do not currently go to but if there is a clinical trial available to me I assume I would go to the Moffitt center in Tampa. 
2. Alisa Moderator
 <inline-mention username="Chasetwins" user-id="8580717"/> I have two friends that are at Moffitt on a clinical trial, they are very happy with their medical team. ~ Alisa
Alyona Member
Thank you Yolanda! The doctor told me that that specific trial requires living in Boston because it lasts as long as it helps. Presumably, forever.

Community Poll

Have you taken our In America Survey yet?