ISO Large Cell Neuroendocrine Carcinoma Survivor--Can You Help?

kismet007
kismet007 Member Posts: 1
edited March 2014 in Lung Cancer #1
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. I have been scouring the message board and have hardly found any mention of this uncommon type of lung cancer. Even knowing there is a survivor or NED out there would be a great comfort! 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 a message board or live chat or e-mail or the phone--whatever works and makes everyone comfortable), I would be so grateful, as would she. Thank you!

Comments

  • [Deleted User]
    [Deleted User] Posts: 0
    #2
    Dear kismet007,
    In addition
    Dear kismet007,

    In addition to post your message on this board, we encourage you to use keywords on our search field to locate others who may have gone through a similar experience. Also, you may want to post your message on the rare and other cancers discussion board. This cold be an effective way to connect with others.

    We wish you the best in locating others,
    Your CSN Staff
  • bdellamarie
    bdellamarie Member Posts: 1
    #3
    Neuroendocrine lung cancer - sister's new diagnosis
    Hello Kismet,

    I am not giving exactly the reply you are asking for, but my sister was diagnosed with this type of cancer about a month and a half ago. It was already at stage 4. She will be 52 in October. She has remained so positive through all this. She was diagnosed - for almost 4 months - with pneumonia, had no insurance and was very depressed because the "pneumonia" was not going away. Finally a CT scan found the cancer. Once she knew what she was up against, she felt ready to fight it.

    Although she is newly diagnosed, I thought that perhaps your sister-in-law would benefit from someone like my sister with such a positive outlook. This could change day to day, and I too am looking for survivor stories...she is taking this better than I am.

    I have not asked my sister about connecting with others who have this cancer, but if your sister in law is interested, I will ask her.

    Also, something I read in a book called Hope by Vickie Girard (for patients and family) is that you are a survivor the day you receive your diagnosis. I know this may be small comfort, but for whatever it is worth.

    warm regards,
    Barbara
  • fighthard
    fighthard Member Posts: 1
    #4
    bdellamarie said:

    Neuroendocrine lung cancer - sister's new diagnosis
    Hello Kismet,

    I am not giving exactly the reply you are asking for, but my sister was diagnosed with this type of cancer about a month and a half ago. It was already at stage 4. She will be 52 in October. She has remained so positive through all this. She was diagnosed - for almost 4 months - with pneumonia, had no insurance and was very depressed because the "pneumonia" was not going away. Finally a CT scan found the cancer. Once she knew what she was up against, she felt ready to fight it.

    Although she is newly diagnosed, I thought that perhaps your sister-in-law would benefit from someone like my sister with such a positive outlook. This could change day to day, and I too am looking for survivor stories...she is taking this better than I am.

    I have not asked my sister about connecting with others who have this cancer, but if your sister in law is interested, I will ask her.

    Also, something I read in a book called Hope by Vickie Girard (for patients and family) is that you are a survivor the day you receive your diagnosis. I know this may be small comfort, but for whatever it is worth.

    warm regards,
    Barbara

    Neuroendocrine cancer
    I was diagnosed with this type of cancer in Aug. I had surgery Sept. 1, 2009. My left lower lobe of my lung was removed. They also took out lymph glands to biopsy. There was no cancer in the lymph nodes. I am meeting with my medical oncologist later- hopefully this week- to discuss chemo. The surgeon said he was almost 100 % sure he got it all, but the chemo would be a safeguard in case any cells broke free. I am having a hard time with depression. I will be fine all day, and then at night I just have a major breakdown. I am on 60 mg of Prozac for depression, and 1 and a half mg of Ativan for anxiety. It is just not helping. I walk 3 times a day, make sure I get out of the house, have contact with people, eat healthy, drink green tea and a lot of water. I just have to fight this depression and anxiety. I would love to encourage and receive encourgement.
  • stephan
    stephan Member Posts: 1
    #5
    survival
    hello kismet

    and good afternoon, my name is stephan and how is your sister in law?
    i have lcnec, this type of cancer is very rare as lung cancer goes and you will have problems finding information on it, very little current information anywhere. if you would like to have her talk with me i can tell her what i have been thru.

    have a great day

    stephan
  • MelissasFriend
    MelissasFriend Member Posts: 2
    #6
    fighthard said:

    Neuroendocrine cancer
    I was diagnosed with this type of cancer in Aug. I had surgery Sept. 1, 2009. My left lower lobe of my lung was removed. They also took out lymph glands to biopsy. There was no cancer in the lymph nodes. I am meeting with my medical oncologist later- hopefully this week- to discuss chemo. The surgeon said he was almost 100 % sure he got it all, but the chemo would be a safeguard in case any cells broke free. I am having a hard time with depression. I will be fine all day, and then at night I just have a major breakdown. I am on 60 mg of Prozac for depression, and 1 and a half mg of Ativan for anxiety. It is just not helping. I walk 3 times a day, make sure I get out of the house, have contact with people, eat healthy, drink green tea and a lot of water. I just have to fight this depression and anxiety. I would love to encourage and receive encourgement.

    Courage
    fighthard, I love your username. I hope your depression and anxiety have abated since your last post. One thing that helps me is knowing "I will not always feel this way."

    My friend was diagnosed with lcnec on December 22 and had a hysterectomy Christmas Day. She is up and about and will hopefully return home today! Chemo will begin within the next two weeks.

    I just read "Anticancer: A New Way of Life" and feel hopeful. I wonder if you have read it? Some of the things you write about - walking, eating well, green tea, staying connected - make me think you've read it too. If not, I recommend it!

    The word "courage" is derived from the French "coeur" for "heart"/"of the heart."

    "Courage is contagious. When a brave man takes a stand, the spines of others are often stiffened."
    - Billy Graham, "A Time for Moral Courage," Reader's Digest (July 1964)

    "Courage is in the air in bracing whiffs
    Better than all the stalemate an's and if's."
    - Robert Frost, For John F. Kennedy His Inauguration (1960)

    "'Tis said that courage is common, but the immense esteem in which it is held proves it to be rare. Animal resistance, the instinct of the male animal when cornered, is no doubt common; but the pure article, courage with eyes, courage with conduct, self-possession at the cannon's mouth, cheerfulness in lonely adherence to the right, is the endowment of elevated characters."
    - Ralph Waldo Emerson,"Courage," Society and Solitude (1870)
  • vptomey
    vptomey Member Posts: 1
    #7
    Large Cell Neurondocrine Carcinoma
    My Sister has been fighting this same cancer for over a year. She has gone through 7 weeks of radiation and 2 different sets of chemo. They were able to take care of the tumor in his lung but the cancer that had spread in to her lymph nodes in between the lungs has grown to twice the size. They are getting ready to do four more weeks of radiation and another set of chemo. This is a more aggresive type of Chemo. They will do it for 3 days in a row and then wait for 3 weeks and do it for another 3 days. I am not sure what the drug is they are using this time. God has been with her. I can not remember the name of the drug they are using this time. I will pray for your sister in law.
  • Bud905
    Bud905 Member Posts: 1
    #8
    Large cell Lung Cancer
    I was diagnosed last thursday with what the doctor called Non non-small type cancer.
    he said it was at stage 3b. I have a tumor where my Trachea meets my lung, in the middle of my Trachea and on a Lymph Node at my Collarbone, all same side.
    I start chemo on Monday for 3 days in a row. the 1st day for 5-6 hours and 3-4 hours for days 2 and 3. We call that 1 cycle, then wait 3 weeks and start cycle 2.
    I then start Radiation on cycle 3 of Chemo. This will last for 6 cycles I think.
    I don't yet know the cycles of radiation. I turned 56 on 9/5/10 and in otherwise good health.

    The Chemo is Cisplatin and VP16. I will let ya know how it turns out if I can find this post again.
    I was also wondering what thoughts of others were about massive vitamin usage or herbal remedies that were helpfull. Seems like I read one account were a guy said massive doses of vitamin C ( something like 100,000 mg/ml a week) and moderate A and B kept him alive (not sure what moderate is).
  • chetchat
    chetchat Member Posts: 2
    #9
    fighthard said:

    Neuroendocrine cancer
    I was diagnosed with this type of cancer in Aug. I had surgery Sept. 1, 2009. My left lower lobe of my lung was removed. They also took out lymph glands to biopsy. There was no cancer in the lymph nodes. I am meeting with my medical oncologist later- hopefully this week- to discuss chemo. The surgeon said he was almost 100 % sure he got it all, but the chemo would be a safeguard in case any cells broke free. I am having a hard time with depression. I will be fine all day, and then at night I just have a major breakdown. I am on 60 mg of Prozac for depression, and 1 and a half mg of Ativan for anxiety. It is just not helping. I walk 3 times a day, make sure I get out of the house, have contact with people, eat healthy, drink green tea and a lot of water. I just have to fight this depression and anxiety. I would love to encourage and receive encourgement.

    cancer type large cell
    I have the same kind of cancer you have i had my surgery june 4th 2010,my left upper lobe was removed by vats surgery now the have me on chemo ,they also told me they got it all! they are giving me cisplatin and v16 I take it 3 days the wait 19 days to recover,then about the time i feel like doing active things, its time to get it again i have taken 3 set of treatments,one more to go! then now they tell me i will have to get head radiation treatments, to prevent cancer from spreading there, we sure picked the rarest cancer to get! I have been eating lots of veg,and fruit,taking supplements, and just hoping for the best! I sure wish they would hurry up and find a cure for all cancers!I not sure chemo does much for are type cancer,but they are treating it like SMALL CELL CANCER,I will let you know if i hear anything good,I look at different cancer sites! the chemo they give me really makes me tired,and out of breath!My side feel like a cannonball hit me,still sore getting better each month! good luck to you i am chetchat i live in southern indiana. chetchat1@yahoo.com
  • dave-n
    dave-n Member Posts: 1
    #10
    chetchat said:

    cancer type large cell
    I have the same kind of cancer you have i had my surgery june 4th 2010,my left upper lobe was removed by vats surgery now the have me on chemo ,they also told me they got it all! they are giving me cisplatin and v16 I take it 3 days the wait 19 days to recover,then about the time i feel like doing active things, its time to get it again i have taken 3 set of treatments,one more to go! then now they tell me i will have to get head radiation treatments, to prevent cancer from spreading there, we sure picked the rarest cancer to get! I have been eating lots of veg,and fruit,taking supplements, and just hoping for the best! I sure wish they would hurry up and find a cure for all cancers!I not sure chemo does much for are type cancer,but they are treating it like SMALL CELL CANCER,I will let you know if i hear anything good,I look at different cancer sites! the chemo they give me really makes me tired,and out of breath!My side feel like a cannonball hit me,still sore getting better each month! good luck to you i am chetchat i live in southern indiana. chetchat1@yahoo.com

    Large Cell Neuroendocrine

    Recently my dad was diagnoseed w stage 4 Large Cell Neuroendocrine. Upon diagnonsis, he learned it had already spread-- liver, bones, lung-- so there is nothing to target. It is aggressive and he is undergoing chemo from a facility that only handles cancer and is in a large city.

     

    Everyone tells us the prognosis is grim. 9 months. Maybe 2-3 years.

    No one has told us ANY stories of people who are exceptions and who have survived. I want to know if those cases exist. Even if rare. I want to know if it is possible, even if not probable. Are there people out there who have had had advanced Large Cell Neuroendocrine that have lived beyond 5 years? Or 10 years? Have you heard of any such cases?

     

    Please help update me on your stories... as most of the posts from this board are from several years ago.

  • Sephyrob
    Sephyrob Member Posts: 6 Member
    #11
    dave-n said:

    Large Cell Neuroendocrine

    Recently my dad was diagnoseed w stage 4 Large Cell Neuroendocrine. Upon diagnonsis, he learned it had already spread-- liver, bones, lung-- so there is nothing to target. It is aggressive and he is undergoing chemo from a facility that only handles cancer and is in a large city.

     

    Everyone tells us the prognosis is grim. 9 months. Maybe 2-3 years.

    No one has told us ANY stories of people who are exceptions and who have survived. I want to know if those cases exist. Even if rare. I want to know if it is possible, even if not probable. Are there people out there who have had had advanced Large Cell Neuroendocrine that have lived beyond 5 years? Or 10 years? Have you heard of any such cases?

     

    Please help update me on your stories... as most of the posts from this board are from several years ago.

    How's your dad?

    My husband is 46 and this is his story too.  We came back from PET scan review today and it is as if he had no chemo.  Two rounds of Cislatin and VP 16,  I'm not finding anything good about this.  We are on our way to a Dr. Kulke at Dana Farber. There are only a few dr.s who are experts in this field.  Go to www.NETalliance.com. Everything about this cancer.  I'm very scared, I cry all the time for my husband.  

  • angelcher65
    angelcher65 Member Posts: 4
    #12
    fighthard said:

    Neuroendocrine cancer
    I was diagnosed with this type of cancer in Aug. I had surgery Sept. 1, 2009. My left lower lobe of my lung was removed. They also took out lymph glands to biopsy. There was no cancer in the lymph nodes. I am meeting with my medical oncologist later- hopefully this week- to discuss chemo. The surgeon said he was almost 100 % sure he got it all, but the chemo would be a safeguard in case any cells broke free. I am having a hard time with depression. I will be fine all day, and then at night I just have a major breakdown. I am on 60 mg of Prozac for depression, and 1 and a half mg of Ativan for anxiety. It is just not helping. I walk 3 times a day, make sure I get out of the house, have contact with people, eat healthy, drink green tea and a lot of water. I just have to fight this depression and anxiety. I would love to encourage and receive encourgement.

    How are you

    Hope all is well. I had 1b had upper left lobe removed. Chemo forty hours in 4 mos I’m going onto my my second Christmas. 

    so far scans are clean  MONDAY I get a Ct Scan!

     

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