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lorbethm

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Posts posted by lorbethm

    Frequency of follow up test after surgery ?

    in NSCLC GROUP

    Posted

    We are doing similar things! I had a lobectomy in October and start chemo next week (also four rounds!). My oncologist recommends a CT scan and chest x-ray every 3 months for the first three years, then every six months for the next two years, then once a year. I will also be having octreotide scans in there, too, to make sure the carcinoid isn't back. I would push your docs to be more proactive. Maybe they think it hadn't spread at all? What did they stage you?

    Lorie

    Any advice for surviving Cisplatin and Etoposide treatment?

    in NSCLC GROUP

    Posted

    I am starting Cisplatin and Etoposide for neuroendocrine carcinoma in a little over a week. I know the Cisplatin is nasty for the nausea is causes. Any help on getting through this? I have one day of Cisplatin and three days of Etoposide, then a three week rest. I am to do four rounds. The oncologist has already mentioned antinausea drugs, but he's warned me that it's worse on people my age and my size (I'm currently underweight).

    Thanks for any help you can provide.

    Lorie

    My first visit with the oncologist (m)

    in MEMBER UPDATES

    Posted

    Thank you so much for your encouragement. I will be taking Etoposide and Cisplatin for chemo. She also ordered Ondanesetron and Dexamethasone for the first day. I'm assuming those are anti-nausea drugs? I do three days of infusions that will last around 6 hours each day, then I rest for 3 weeks. I have to do four rounds of this. Has anyone done this particular treatment? Success? Side effects? I'm most worried about the side effects. I know I'll lose my hair and I'm already preparing my kids for that. They think it's a hoot that both of their parents will be bald. LOL My husband already shaves his head every day. I teased him when we were at MD Anderson that HE looked like the cancer patient, not me. ;) Except he has very hairy eyebrows. ;) Hey, we have to laugh about something in this journey!

    I have to get a baseline octreotride scan before I start the chemo, too. It will be negative for now because we know the cancer is currently not in tumor format anywhere thanks to the PET I had before surgery. My oncologist seems to be pretty aggressive considering this is a "slow growing" cancer. I will be getting scans done every 3 months for the first two years, then every 4-6 months for years 3 and 4 and then once a year starting in year 5. I was very surprised with how often I have to have the scans. They think my lung tumors had been there for probably four years.

    Thanks for the help and encouragement. If I don't get answers here, I'll repost in a separate post. Thank you so much!!!

    Lorie

    My first visit with the oncologist (m)

    in MEMBER UPDATES

    Posted

    Well, it was a surprising visit in a way. She immediately latched on to the fact that my appendix had ruptured in August and we didn't know why or if it came back "clean" in the pathology report. Carcinoid usually starts in the gut, so she thinks it's very possible my lung tumors were secondary to tumors in the appendix. I had the option on taking chemo, but with the possibility that it has metastisized, I didn't feel I really had an option. I will start chemo in approximately three weeks. I have to get a specific kind of scan first (can't remember the name of it and my notes aren't right here, but it starts with an "o") and then I can start the chemo. She wants me to gain weight first. I'm down to 92 pounds and I'm 5'7". I lost most of the weight in August, but I'm only normally 116. So I will be drinking lots of protein shakes over the next two weeks. Fun. I am going to be able to get all my chemo done at home instead of having to fly down to Houston. I am very thankful for that. I will be taking four treatments and each treatment is 3 days.

    This is not the step I wanted. I am scared to death of chemo, but I feel I have no choice. I can't risk the fact that it "could" have been in my appendix. So, here we go. :)

    Thanks for the encouragement. :)

    Lorie

    Introduction from New Mexico

    in INTRODUCE YOURSELF!

    Posted

    "Muriel"]Hi Lorie,

    I'm another one who doesn't know anything about your type of lung cancer. I have/had NSCLC. I'm sorry I can't help you with that. I just had to respond to your post because you live in my favorite state. I've been in Taos, Sante Fe, and Cloudcroft. Loved them all. Welcome to our group. I'm sure some of the people with your diagnosis will respond.

    Muriel

    Cloudcroft is our favorite get-away place. :) That's going to be my reward when I get the all-clear...we are spending a weekend in Cloudcroft! ;)

    Thanks for the warm welcome. :)

    Lorie

    Introduction from New Mexico

    in INTRODUCE YOURSELF!

    Posted

    Hi, everyone. I'm a newbie to this board, but not to the world of Internet communities. :) Thanks to Ken for introducing me to this board. :)

    I am a 37 year old non-smoker who has been rudely introduced to the world of lung cancer with the diagnosis of neuroendocrine carcinoma in October. I had a lung resection on October 11th where my lower right lobe was removed along with a tumor that had two lobes. I also had 11 lympnodes removed at the same time. All the lymphnodes came back clear, as did the margins. My pathology report states, though, that lymphvascular invasion was identified, so I'm assuming that I will start learning about the wonderful world of chemo beginning next week. I am a patient at MD Anderson, and I thank God for the doctors there every day. I am stage IB.

    My cancer was found by "accident" (I say by God-cident) when my appendix ruptured in August. They were doing CT scans at our local hospital trying to figure out what was wrong with me when they found the two masses in my lungs. After I recuperated from that surgery and a 13 day hospital stay, I went down to Scott & White for a bronchoscopy and biopsy. They initially diagnosed me with SCLC but then two days later decided it was a hamartoma. I then made the smart decision to head on down to MD Anderson for a 2nd opinion. It was after my lung resection that the final diagnosis was made.

    In my "normal" life, I work as an instructional technologist for a community college, and also teach part-time for that college. I am the mom to two wonderful kids, Alex who is 8 and in the 3rd grade, and Aleice who is 4 and in preschool. I've been married for 14 years to the same incredible man who has been by my side through the past four months supporting me and encouraging me. We are active members of the church of Christ in our hometown and are trying to stay active even through the recuperation after two major surgeries. I am hoping that I can start back to work on December 3rd after not working since August 1st. My employer has been incredibly supportive through this whole process and have even provided monetary support through donations.

    I am still trying to learn about my particular kind of cancer. It doesn't seem to have a lot of information "out there" but it appears mine is a slow growing cancer as there were no changes in the size of the tumors from August to October. If anyone has any further information about this cancer, I'd love to read it.

    Thank you in advance for the encouragement I will receive. I never thought I would walk this cancer path and it's been very scary, but I see God put people in my path constantly who can encourage me.

    Hugs and thanks. :)

    Lorie

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