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large cell neuroendocrine -HELP!


hockeyma

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Well we didn't get the catscan results back yet but we did get the revised pathology report which are done for the third time now- this time by Sunnybrook. They didn't know if there was thyroid involvement and were checking because the characteristics of my husbands cancer were so abnormal. The result is metastic large cell neuroendocrine lung carcinoma. Apparently this isn't common - stats are 5-10 percent of nscl are this -and have poor prognosis from what I have read. Does anyone know anything much about this or know anyone that has it. I have done a few quick searches on this site as to not freak myself out too much as we have to take kids to hockey shortly and I am coming up with more links to small cell. I don't even know if we want the results of the catscans when they come in - seems like the better he feels the worse the reports say he is. So strange. Help would be appreciated. Thanks.

Heather

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Try these links when you have time:

1)https://www.moffitt.org/moffittapps/ccj/v13n4/pdf/270.pdf

2)http://www.virtualrespiratorycentre.com/diseases.asp?did=592

In efforts to improve cure rates of LCNEC, postoperative adjuvant chemotherapy or radiotherapy has been used in several series of this dis-ease.[4,13,19,29,30] One series from Iyoda et al [31] did find a survival benefit to adjuvant chemotherapy in a small subgroup of 5 patients with stage I disease treated with cisplatin, carboplatin, or cyclophosphamide. As a result of the small numbers in each study and the relative infrequency of LCNEC, no standard adjuvant therapy regimen has been developed. It has previously been suspected that LCNEC tumors are resistant to conventional chemotherapeutic agents. A majority of lung neoplasms with neuroendocrine markers were found to express the multidrug resistance gene (MDR1), a harbinger of resistance to chemotherapy, in a study reported by Lai et al. [32] The somatostatin analog octreotide represents a potential novel adjuvant biologic therapy. It has been shown to control metastatic growth while being well tolerated in the treatment of other neuroendocrine tumors.[24,33] The role of adjuvant therapy for early-stage LCNEC or mixed LCNEC should be examined in large-center prospective, randomized trials.

Sending Prayers for some good news right now and always. keep me posted if I can help with anything

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Heather:

I did some research digging around this morning and I've got to say that what RandyW gave you is the best of what I found as well (so far, anyway). They really are all over the map with this one and don't really seem positive whether it's closer to small-cell or non-small cell behavior, even though it's a distinct subset of NSCLC. I did find just as many references that survival is the same as other LCs as those saying poorer prognosis so please don't freak out about that -- it's probably going to depend on the individual particulars, just like the rest of us.

I'm hoping Dr. West will respond to this thread. I'm no expert, but I did find some reference that neuroendocrine features can present similar to other carcinoid syndromes......what that means to me from past research in trying to help Carleen is that the body's hormones might play a role in this and I wonder if hormone therapy of some sort might help decrease the chances or severity of recurrance. The drug octreotide which is mentioned is the give-away to that possibility -- one of it's uses is to inhibit the secretion of various hormones in the body.

Hope this helps,

Linda

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Heather:

I don't know if any of these clinical trials will help, but let's keep this reference in your "back pocket," just in case, while we are running across them.....they are U.S. and I see you are in Canada (research continues).......

http://www.cancer.gov/search/ResultsCli ... id=2956513

Linda

(I'll edit this post if I find more)

Edit: well, I came full-circle back to what I already listed here. It's the best I seem to be able to find; I couldn't find a darn thing relevent in Canada; hopefully someone else might.

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Hi

Thank you so much for all of the help so far - keep it coming - i am so grateful. This has been a real roller coaster ride so far for sure. I am printing out all I can and want to make sure I have it all together on the 1st of Feb for meeting with radialogist and oncologist at Sunnybrook. I know they are going to set the radiation up then....but he needs a long term plan big time.

Heather

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Heather:

The more specifics you can post about what you're being told along the way, the better -- specific information helps the researching for you to be more effective. The terminology on this particular dx is new to me, but I do have time I can put into internet research to help you prepare, if that helps any. Can't promise I'll find much more to help, but at least I can try. Virtually every morning for at least the next week I can put in about 2-3 hours of internet research time early in the mornings.....just post what you can here, including any specific things you're having trouble getting info. on and I'll do my best (as I'm sure others will to!).

My big problem so far was finding anything of relevence published specific to Canada, including the Canadian versions of places to look for publications on clinical trials. Any website references you have to places that should be available to help you might help too for any stateside folkies that have some research time available.

Hang in there,

Linda

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My mom had LCNEC. Neuroendocrine lung cancers fall on a spectrum. SCLC is a neuroendocrine cancer

They are from least to most aggressive:

Carcinoid->Atypical Carcinoid->LCNEC->SCLC

Sometimes LCNEC is treated like SCLC. In a Japanese study patients responded well to CPT11-Cisplatin combo of chemo. Note: it was in Japan so the genes of Japanese decent may respond better than non-Japanese.

There are a few trials with using Somatostatin analogs as "smart bombs". I think most are in Europe. A radio-isotope is attached to a Somatostatin analog and the radiation is supposed to target the cancer cells. Indium-111 is one isotope

Take care

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Heather:

Here's a link to an LCSC thread of a new member that had been diagnosed with LCNEC -- those who responded to him gave many useful links to information....for some reason, my computer is not giving me a specific address to cut and paste here...

Right now, it's on page 4 in the introduce yourself forum and called "Large Cell Ceuroendocrine" by Greg Drevs (October 2006). RandyW, john, Ry, and many others gave really good info. there.

Hang in there,

Linda

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I responded to this question at OncTalk, but chances are that other people are interested and didn't see the response, so I wanted to clarify things here, as best I can. I’m quite familiar with the diagnosis — it’s an unusual subtype of NSCLC that has never been really broken out and treated separately from other types of NSCLC. When lung cancer experts get together, we sometimes talk about how we manage large cell neuroendocrine tumors, or whether there is a best approach. With no trials specifically targeting this type of cancer, most people treat it like other NSCLC cases. B ecause it’s a neuroendocrine tumor, it shares some similarities with SCLC, so some people will modify and treat it like extensive small cell lung cancer — which would usually be a platinum and etoposide. If it were a resected early stage NSCLC, I might use cisplatin and etoposide as adjuvant (post-op) chemo rather than another chemo doublet (cisplatin/etoposide wouldn't be a bad choice for other NSCLC types, but it isn't at the top of the list for most oncologists). For stage III large-cell neuroendocrine carcinomas, the treatment is really remarkably similar whether you consider yourself treating a large cell or small cell lung cancer, since the cornerstone of my approach is cisplatin/etoposide/radiation either way.

It does seem to be somewhat harder to treat (less responsive and more likely to recur) than other types of NSCLC, but there are just not enough cases of LCNEC to draw firm conclusions. While treating along the lines of SCLC would be an option, I would say that the majority of oncologists, including lung cancer experts, would be inclined to treat LCNEC in the same way as other NSCLC subtypes.

Finally, I'm going to always try to keep up with things here, but if my schedule is getting tight, you can pretty much guarantee that I'll respond if I see a question on the OncTalk forum.

I hope this info is helpful.

-Dr. West

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In addition - I would like to thank Dr West and everyone here who has responded and researched to help me and my husband out. I think that this website has ultimately got to be the best source for someone who is touched by lung cancer....whether they be the caregiver - the patient - or those grieving. I lost my brother suddenly to meningitis at the age of 32 in 1998 and when my husband got diagnosed in October this year at the age of 42 I made a vow to myself that I would do whatever I possibly could to prevent him from dying. I searched all kinds of websites and finally with a lead from Ernie on another message board found this site. The information, communication and help are a huge bonus as well as comforting because you don't feel like you are battling this beast and all that goes with it alone. When the other day we found out that Geralds cancer diagnosis was not common and that treatment could vary it really threw me for a loop. I now have masses of information that is not just statistics but from very real people and I appreciate that with all my heart.

Heather

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  • 2 weeks later...

Hi Hockeyma,

I was dx w/ stage IIIA, Large cell and the division is clear cell in July of 2003. Not a common lung ca.

Had lobectomy , radiation and chemo, and have been fine ever since. Keep the faith.

Mare

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