My sister-in-law has recently started treatment for a stage IIIA large cell neuroendocrine carcinoma of the lung with a tumor in the mediastinum. She is in her early 40s and a mother to three young children. She would desperately like to establish communication with a survivor of her particular kind of lung cancer and who is currently in remission. She is having a very difficult time seeing the light at the end of the tunnel. She has tried connecting with survivors through her hospital, but has not had any success because the hospital hasn't been able to find anyone. She feels it would be very helpful for her to have some kind of contact with someone who has been where she is. If you have suggestions for how she might connect with a survivor of this unusual type of lung cancer, or if anyone on this board who has lived through LCNEC (or knows someone who has) and would be willing to communicate with her (over live chat or e-mail or the phone--whatever works and makes everyone comfortable), I would be so grateful, as would she. Thank you!
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ISO large cell neuroendocrine carcinoma survivor
- By kismet
- Posted May 24, 2009 at 9:56 pm · 7 replies
- In Non-small cell lung cancer - Stage III
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- By whynotme
- Posted May 25, 2009 at 12:41 pm
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Hi,
This is the 2nd time I'm replying, the 1st must have not taken...my husband went thru chemo for nsclc(carbo/taxol), then surgery, removing 2 lobes on the right and lympth nodes. Pathology found large cell neuroendocrine diagnosis, small cell variation that's just been isolated since 1990 so more chemo (carbo/VP16), brain radiation (had 3 small mets) and now waiting to take scans and mri. He would have had brain radiation prophylacticaly as a precaution, because there it goes next sometimes. If he has no spread there will be more radiation to his chest. It's so scary for anybody, but to have 3 young children it must be wrenching. I wish I could say he is in remission but the battle is still on, as is the waiting game. He is 62 today and we are going out to celebrate his life. Please let your sister in law know she is in my heart and thoughts and tell her to hang in there. susan
- By karenere
- Posted May 25, 2009 at 1:11 pm
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I have no idea about this prognosis, but I will keep her in my prayers.
Karen
- By kismet
- Posted May 25, 2009 at 11:47 pm
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I hope you and your husband had a great celebration today, Susan. It sounds like you have been through so much. Your husband and my sister-in-law are getting similar treatments. My sis is using VP16 and cisplatin, plus radiation targeting the tumor in her mediastinum. The doctors don't think the tumor will ever be operable, so they are focusing on neutralizing it and shrinking it. When was your husband diagnosed? My sister-in-law is experiencing so much fatigue from the radiation. So far, the side effects from that have been worse than from the chemo, but it's still early. She'll be doing both through September. Thank you for your good wishes. I send you and your husband all of my best wishes for recovery, too.
- By whynotme
- Posted May 26, 2009 at 2:39 pm
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Hi, he was diagnosed in October, had surgery in January, when they thought it was nsclc. Had they known maybe they would have not done surgery. Did she have an mri of the brain? The scans didn't show brain spots on him but maybe because they were so small...
We had a nice day away and acted like normal, hardly cried, ate cake and were grateful for each moment.
Sounds like your sister in law has some good support in family like you. This is a place to come to when you need to lean too, like I'm doing.
I chose the name why-not-me, because with so many wonderful people afflicted with this terrible disease, to me it's not a matter of why me? why not? It wasn't my turn until now to take this walk, but fight we will.
- By whynotme
- Posted June 28, 2009 at 2:40 pm
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Dear Kismet,
I was wondering how your sister in law was doing, in fact I mentioned her originally to my husband and he wondered too. I just want you to know there may be a light at the end of the tunnel, for my husband had clean scans and mri. The WBR worked and the regimen, like your sister in law's, of VP16/carbo also did the trick. Now they'll be radiating his chest, the mediastinum where they both had tumors. Keep me posted on her, we think of her and worry that you haven't written. He is shy but if she needs to talk, I bet he would open up. take care, Susan
- By kismet
- Posted June 28, 2009 at 5:18 pm
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Dear Susan,
Thanks so much for thinking of us. I am so happy to hear your good news! My sister-in-law is doing reasonably well. She just finished the chemo regimen and 60 radiatation treatments. Her last PET scan (about 2 weeks ago) showed no spread or growth, but it wasn't clear if the tumor (in the mediastinum) shrunk either. She is having MRIs this week and then we're planning on surgery in a few weeks to try to remove whatever remains of the tumor. All in all, we're optimistic that the doctors can beat this back. She's been very lucky to have not had too many side effects from the chemo and radiation. We hope your husband also finds radiation tolerable. Keep us posted on how he's doing and we'll do the same.
- By whynotme
- Posted September 13, 2009 at 4:28 pm
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Kismet, how's your sister in law doing? My husband finished his chest radiation weeks ago and in two weeks he'll be having followup scans. I just started crying jags the past few days but had been doing pretty good. The stress builds up and then the waterworks! She has the same kind of cancer as his, please let me know how she is. And tell her we're sending positive thoughts her way. Bless your family. Susan
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