Large Cell Neuroendocrine Lung Cancer Stage IV

Hi Margot49,

Welcome to GRACE. I'm sorry to hear of your progression. It's true that after the initial standard therapy of platinum/etoposide, there isn't a clear follow-up strategy, although since this type of cancer is treated much like small cell lung cancer, other agents used for SCLC could be tried. There are indications that immune checkpoint inhibitors such as Keytruda (pembrolizumab) can be effective. You can read a recent discussion of this approach here:

https://www.carcinoid.org/2019/04/11/promising-developments-in-the-pipeline-for-high-grade-neuroendocrine-tumor-diagnosis-and-treatment/

I hope that the new regimen will be effective, well-tolerated and durable (long-lasting).

Jim C Forum Moderator

Hi Margot,

I'm sorry you're having trouble posting.  If you tell me where you're having trouble I'll try to help.  

You said you can't travel for treatment which is the case for most.  At the least it's inconvenient and for most too expensive.  However, that often isn't the expected result of second opinions.  Below is a quote from an article by Dr. Weiss on 2nd opinions.  It's a Grace standard.  

"Many patients seek a second opinion to evaluate if their current choice of treatment is correct and to make sure that nothing is being missed. Self-assured, nerdy, ivory-tower academic docs (yes, I’m making fun of myself and my friends here) love to criticize local oncologists to make ourselves feel smarter. But, the truth is that there are a lot of incredibly talented, brilliant community oncologists who somehow manage to know all the details of care in not just one or two cancers, but in all of them! Very frequently, I have the great pleasure of assuring a patient and their loved ones that they are receiving sterling care and that they should continue on with the current plan. In such cases, the second opinion provides reassurance. Further, the academic doctor can educate you about your cancer from a different perspective. Finally, in such a consult, you can establish a relationship with the second opinion doc in case you want additional input later on. Regardless, most patients are seeking some kind of advice about treatment options."

I hope you do well on your next treatment.

All the best,

Janine

Margot,

I'm glad to hear you have that 2nd opinion onc and hope you don't feel uncomfortable with your local onc feeling resentful.  He probably doesn't and even if he does we're talking life and death, yours,  so who cares.  I think people, in general, feel safer when the doctor appears more "into" the situation, again that's not generally not the case.  However, I would probably try to pull him into the team spirit.  Most people would laugh at the idea that I'm a people pleaser but I am at heart, probably just not that good at it.  :)   Don't worry about your onc's pride I'm sure it's fine.  

The combination sounds good.  Since LCNC is considered rare it stands to reason there is little data to direct doctors on how to proceed 2nd line (that was the case for metastatic nsclc 15 years ago).  Both taxanes and immunotherapy have shown promising results in LCNC separately.  Taxanes in combo with immunotherapy have proven to be effective together in squamous nsclc so it's a good guess that the combo will also work well for LCNC.   Unfortunately, this type of guessing game is used to make treatment decisions for rare cancers that don't get the full-on clinical trials that more prevalent cancers can get.  

The carbo in your last treatment was the main culprit in your low white blood counts that knocked you off treatment but your new plan shouldn't do that.   And if you start to have tingling in your hands or feet (Abraxane will likely cause the long nerves in legs to be affected after a month or so) there are drugs like gabapentin that can help.  Know that there are good management strategies for many of the side effects.  If your local onc team can't help you can always contact your specialist.  

I think you and your onc are going to be surprised by the outcomes and I look forward to your updates. 

All the best,

Janine

Hi Margot,

I too am happy to hear that you have a plan in place and, whether grudgingly or not, your local oncologist is going along with it. 

In addition to the great information that Janine has provided, I will add some personal experience. When my wife used Abraxane, she suffered very little in the way of side effects. And though some neuropathy may occur, for many patients it is not severe and does not require dose reduction or discontinuation of the therapy. As stated in the Abraxane prescribing information:

"For the ABRAXANE plus carboplatin treated group, 17/514 (3%) patients developed Grade 3 peripheral neuropathy and no patients developed Grade 4 peripheral neuropathy. Grade 3 neuropathy improved to Grade 1 or resolved in 10/17 patients (59%) following interruption or discontinuation of ABRAXANE." - https://media.celgene.com/content/uploads/abraxane-pi.pdf (Section 6.2)

Additional information on other side effects is also reported in the document.

Good luck with the new regimen.

Jim C Forum Moderator

Hi Margot,

i'm very sorry to hear about the brain mets. Whole brain radiation does tend to do a good job of eradicating everything that has shown up in the brain, and though WBR will most likely cause some fatigue, I hope that you will be able to resume systemic treatment not long after you finish the radiation.

We will be keeping you in our thoughts.

Jim C Forum Moderator

Hi Margot,

I'm so sorry they found brain mets.  Like Jim said wbr can kick them right down.  I wish you could not worry about your loved ones it must just add to the pain.  Being a "loved one", a "caregiver" comes with lots of worry as you know but it's the price we pay for admission into this world and we couldn't have it any other way.  Cancer seems to have the ability to add insult on top of insult to those with it and their loved ones.  Take those moments of living and loving life as you can.  

We are keeping you close and sending the best to you.

Janine