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I've got a great update and a decision to make.

After a resection of a small brain tumor plus gamma knife and just two cycles of chemotherapy, my Mom is presenting as NED (no evidence of disease) with small-cell lung cancer (SCLC). She has no side-effects from chemo, so she will go through 6 full cycles.

However, I want to line up the next treatment. Usually, there is no maintenance regime with SCLC. We have 3 options:

1) Thoracic Radiation - Accepted to suppress the cancer from coming back, but may this preclude us from future clinical trials, many of which have prior radiation as an exclusion criteria.

2) Immunotherapy with Opdivo/Keytruda - Seem to be effective in many cases with SCLC and can be prescribed off-label for SCLC, but I think you'd only get these for treatment of a solid tumor, correct? Wouldn't be given if NED, right? So, I think this isn't an option outside of a trial.

3) Clinical trial - I've found next to nothing in terms of a maintenance trial for SCLC, and of those I found, only 1-2 would accept NED patients. Of these, one had 4 patient groups: 2 with placebo, 1 with Rova-T which is reported to have a lot of side-effects and just spectacularly failed a phase II trial, and 1 group with Dexamethasone, which gives my mom  bad side effects. So, this isn't at all appealing. Anyone know of something else I may have missed?

Any advice on what to do from here or your experience would be very welcome.

Celebrating NED!

Thanks.

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JoshK

Yay!!! Thanks for sharing the great news. I have NSCLC so don't know much about what's going on with SCLC. But that's Tom's ballpark, so I know you'll get some good info. The only maintenance type thing my Oncologist ever mentioned was maintenance chemo. And since I'm trying Immunotherapy right now he hasn't brought that up recently. Since your mom seems to be doing great with the chemo she's taking would that be a possibility? As I understood it it's simply a regular low dose of chemo. 

Judy M

 

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I don't believe that's an option for SCLC but simply because no one ever mentioned it to me and I'v never come across it. I'll investigate further.

 

Thanks!

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Josh,

I can't believe I missed your good news post.

Thinking ahead of lung cancer is indeed a good plan.  Recall I'm not a doctor so anything I suggest ought to be discussed with your mother's doctor.

If it were me, I steer clear of thoracic radiation unless there is a tumor or tumors to attack.  This type of "conventional" radiation can only be given once and I think the radiation silver bullet should remain unloaded unless an outbreak of widely scattered tumors are detected.

I've read about immunotherapy and Small Cell and you are right to think about an off label option.  I'd start this discussion with your mom's doctor.  Moreover, I've read immunotherapy effects are enhanced when accompanied by radiation.  So this is another reason for holding off on radiation.

Great news.  Hope you and mom go off and have a fine vacation this summer.

Stay the course.

Tom 

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Thanks Tom. I really appreciate it.

My Mom's primary oncologist said typically immunotherapy is only given to SCLC patients presenting solid tumors, but she is also rather "by-the-book" so I'm getting some second opinions from other doctors and people with experience.

With the thoracic consolidation radiation, it has been shown to increase 2-year survival rate by up to 4x, by delaying a return of the cancer (an almost near certainty with SCLC), so the idea is if they can delay the relapse by more than a year, conventional chemo works rather well at that point. However, if we don't do anything, if it comes back in a few months it will be much more difficult to treat.

The "do nothing" option is actually conventional for SCLC, but if we skip radiation at this point, that may be our only option if indeed they don't prescribe immunotherapy in the absence of a solid tumor and there are no suitable maintenance trials.

I have not yet had this conversation with my Mom's radiation oncologist, but I will reach out to him soon. It's a tough call.

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Good you're getting some other opinions. I had another (non-lung)cancer  that was Stage 3 and a rare type and my oncologist was rather "by the book", although there was literally no book - no published studies- on this cancer. I got a second opinion, from an oncologist with clinical experience with the rare type, and my original oncologist agreed to follow it. I'm glad I did this. Today I'm NED on that cancer, 7 years out,  as well as on my NSCLC.  . So I'm now a fan of second opinions. I felt like I needed to be as informed as possible to make a good decision about treatment. With my NSCLC, which was a garden variety, things were a lot more clear cut.

All my best to you and your mom in her hard decsionmaking.

Bridget O

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