Large Cell Neuroendocrine Lung Cancer Stage IV

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Margot49
Large Cell Neuroendocrine Lung Cancer Stage IV

First post.  

I was diagnosed with LCNEC Dec., 2018.  This diagnosis was made by Stanford.

i received 4 rounds of Carbo/Etroposide and. PET scan in April showed I was stable. Chemo was stiopped as my blood work continued to be low and was on a Chemo break.

 

Just had another PET scan that showed previous spots have grown and the cancer has spread.  It started with a tumor in my left lung, is in sone lymph nodes. More in the liver and on both ad real glands now.  Doctors was rather shocked to see it had become so aggressive.

Thete is no treatment protocol for this cancer.  I receive treatment close to home.  Stanford doctor wants another brain MRI and has suggested Abraxane and Keytruda.  I was told Keytruda was just approved for this 2 weeks ago. 

Thete is so little information about treatment for this cancer.  I am wondering if anyone has dealt with this cancer. 

Jim C Forum Mod...
Jim C Forum Moderator's picture
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

 

Margot49
LCNELC

Hi Jim,

Thank you for responding. I was having a heck of a time posting in the forum.

thank you for those links.  I did read them. Sorry to see Stanford is not part of that SWOG team, as that is who I am consulting with for treatment.  However, the doctor I see is pretty well known in this field.  I remember my son, who lives in So. Cal, thought he had read an article regarding NED.  I called Scripps, who has partnered with MD Anderson, but they said they had nothing there for me and suggested MD Anderson in TX.  We really are not in a position to travel for treatment.  

I am just afraid my cancer is to widespread now but I can hope. 

Thank you again. 

JanineT Forum M...
Hi Margot, I'm sorry you're

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

Margot49
LCNED

Hi Jim,

I think I have this figured out and found my way back.  

Thank you for the link. That is pretty much how things have gone.  We don't have many good Oncologist's in my area.  Even my GI Doctor told me to get a second opinion out if this area.  I do have an Oncologist here but sought a second referral at Stanford. My local Onc here admitted he has seen very few of these cases and there is no treatment protocol. He is,I feel begrudgingly, following the treatment plan suggested by Stanford.  He had no Plan B and pretty much told me to contact Hospice, which I did, to get on board.  I start the new treatment tomorrow, Abraxane/Keytruda, and am a nervous wreck.  I have a brain MRI today my local Onc was not going to repeat but the Onc at Stanford wants it done so he ordered it.  I don't think he is communicating with them well.

Hope I will be around for a while to come back and update.  Praying fir some good results and, maybe, this can help someone else.

 

thanks! 

JanineT Forum M...
Margot, I'm glad to hear you

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

 

 

Margot49
LCNELC updates

The results of my MRI came in and my local Onc called me Friday morning.  My cancer has spread and there are several spots in the brain.  My heart sank.  He called the Radiation Dept at the hospital and tgey got me in that afternoon for consult.  Thank goodness my daughter is still here and she and my husband went with me.  The Radiologist brought up my PET and the MRI and pointed out several small spots in the brain and one larger on on the right front.  He did some Neuro testing and I did ok with that. He is recommending full brain radiation, once a day for 10 days.  He will discuss this with my Onc.  Chemo/Immuno would be stopped until this is addressed.  Who knows when, in the 2 months between PET scans this cancer took off after Chemo was stopped.  I am scared, to say the least.  My Oncologist at Stanford is out of town so I can't consult with her.  I was told, if this is not addressed, there woukd be no use to continue further treatment. 

Actually, because it is "me", I developed small fiber neuropathy (diagnosed by punch biopsy at Stanford) before this Cancer diagnosis and had been on Gabapentin for GI issues for some time and still am.  I still have it in my left hand and feet but it hasn't gotten any worse, so far. What I have been having issues with is cramping in my hands and feet.  

I hope you are right because this has put me on the verge of stopping treatment.  I just don't feel good every day and do next to nothing.  Just not sure I am up to this physically.  

Thanks,

Margot

Jim C Forum Mod...
Jim C Forum Moderator's picture
LCNELC

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

 

Margot49
LCNELC updates

hi Jim,

Thanks so much for continuing to follow these updates.  I addressed some of these issues in my reply to Janine.

so far (knock wood) I do not have the side effects I had with the Carbo/Etroposide but feel unwell.  I still have the pains across my chest, my liver area has started hurting and I feel more short of breath. My BP and heart rate are elevated "for me".  I never have a HR between 90-100.  

It is this cough that is wearing me down. There is a spot in my chest the Radiologist said may be aggravating it and may talk to my Onc about trying some radiation. Again, side effects scare me.  This feels bronchial and "nothing" helps it.  My Onc has ordered weekly blood work to watch my counts. No using Granix this time as it would not have time to work with weekly Abraxane.  That is on the back burner now anyway with the brain metastisias.  Afraid that just gives the Cancer an opportunity to spread even further. The past 3 days, I feel tender in the liver area.  I have a spot on L-3 but no mention of addressing that.  

I do not do "sick" well and not sure how much I can tolerate.  These illnesses really affect those around you and that makes me feel bad.  Luckily, they are supportive but I have been down this road with other family members and know it is no easy task.

Guess I will try the radiation, pray for little side effects, and trudge on.  I am hoping that any pris or cons with my treatment may help someone else facing this.  

Margot

Jim C Forum Mod...
Jim C Forum Moderator's picture
LCNELC updates

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

 

JanineT Forum M...
Hi Margot, I'm so sorry they

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