Extensive small cell - looking for survivors

[DanniDe]

Hi there, My fiance aged 31 was recently diagnosed with extensive small cell carcinoma of the bowel. He is fit and healthy and this has come out of no where. It started out with some tummy pain and constipation just a few weeks earlier.

The tumor started in his colon, which has spread to his liver, and some surrounding lymph nodes. 
We were told this type of cancer is generally a lung cancer caused from smoking, and it is rare to get it elsewhere. He has never been a smoker and it is not genetic, so sadly this has come down to a case of pure bad luck.

Based on this he is being treated as a lung cancer patient and has just finished his second cycle of chemo, consisting of cisplatin and etoposide.

Aside from the hair loss and some weight loss, he has had no other side effects and not been unwell at all, which is good to see.

Given what I have read online about this ugly and aggressive cancer type, and the rarity of it, I guess I am desperate for hope - I am seeking to find and hear from other small cell extensive survivors. Any hopeful advice or stories would be so much appreciated ! 

[Tom Galli]

DanniDe,

Welcome here.

Oh my.  Do I understand small cell lung cancer (SCLC) with a primary tumor starting in the colon? Has a biopsy been performed?

SCLC is indeed aggressive but it is successfully treated.  Here is some information you may find useful about SCLC including clinical trials available as additional treatment methods. Notice the immunotherapy clinical trial options. Immunotherapy treatment advances are occurring almost every day.  From your description, your husband is receiving first line (first treatment) standard of care treatment.  As a second line therapy, discuss immunotherapy options with his medical oncologist.

I well understand your desperation.  Small, large or non-small lung cancer is a hard treatment target.  But there are treatment victories: read here.

And here is my suggestion for surviving lung cancer be it small, large or non small.

More questions? This is the place.

Stay the course.

Tom

[DanniDe]

Hello Tom,

 

Thanks for your reply. 

They did do a biopsy which confirmed his case is not genetic, they are also going to test for markers (PDL1) - at our last appointment the professor discussed the possibility of Keytruda post chemo. 

We also got the results from his first scan post two rounds of chemo - it came back as no change to the primary tumor in the colon, so currently stable.

Lymph nodes and some liver lesions are 20-30% reduced, but some liver lesions appear larger. However He explained that the inside of those cells are dead, and it looks to be inflamed. He told us that they will shrink and they are doing a follow up CT next week out of pre caution. 

 

[Sunny Harris]

How is your husband doing today?

[Daniel]

On 5/1/2018 at 3:00 AM, DanniDe said:

Given what I have read online about this ugly and aggressive cancer type, and the rarity of it, I guess I am desperate for hope - I am seeking to find and hear from other small cell extensive survivors. Any hopeful advice or stories would be so much appreciated ! 

There are many extensive stage small cell lung cancer survivors on Twitter. One of them is Montessa M. Lee, she was diagnosed in December 2006, went into remission and cancer never came back. She is still alive, no evidence of disease. There are other survivors too. If you have Twitter, get in touch. No cancer has 100% mortality rate. Survival rates for SCLC vary, based on gender, age, race, and stage. However, for every 1 year survived, chances of surviving next 5 years more than tripple, see here