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Your Iowa Carcinoid Cancer Connection

on February 22, 2012

Do you have carcinoid cancer and live in Iowa?  You’re not alone!  Come say hi and connect with the rest of us!

This is a support group for carcinoid cancer patients, their family, friends, and caregivers. We are here to increased awareness, education, and support about carcinoid cancer.

We look forward to hearing from you!

Jennifer Holm

Carcinoid Cancer – Iowa Connection

iowacarcinoid@yahoo.com

515-205-4565

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36 responses to “Your Iowa Carcinoid Cancer Connection

  1. Leanna says:

    So thrilled to see such a place where people who think they are alone in this fight can find true support. Please let me know what I can do from Cali to assist in the awareness! Loving and Healing energy being sent to all in need.
    Leanna

  2. Thanks Leanna! There are some support groups in Cali. I’ll try to find out if anyone is having an awareness walk or event. We’re happy to get all of the support we can! 🙂 Thanks!

  3. Deb K. says:

    So can some one from Mo. Chat with you,sure would be nice

  4. Kim Mattke says:

    No support groups in South Dakoa! I have just been diagnosed again with lung carcinoid tumor with extensive lymph node involvement. First time was 11 years ago. They removed 1/2 of the left lung and did a sleeve resection. Now the tumor is in my right lung. This time is different. I feel very sick. I have constant abdominal pain, diarehea, and weight loss. I am only 44 and can’t believe this s happening to me AGAIN!

    Is there anyone out there who has been through this more than once?

    Thanks for your help,
    Kim Mattke

  5. Actually, Kim, your email keeps bouncing back to me as undeliverable. If you can send me an email at iowacarcinoid@yahoo.com then I can reply to it and help you out. 🙂 Thanks! Jen Holm

  6. Marilyn Warling says:

    I had surgery for typical carcinoid of the lung on 01/20/2012. I am interested in finding a physician that specializes in lung carcinoids. It seems all the experts concentrate on gastro intestinal carcinoids.

    • Hi Marilyn!

      Have you spoken with Dr. O’Dorisio in Iowa City? There is also a great team down in New Orleans as well. I’m in correspondence with many lung carcinoid cancer patients as well. I’ll try to email you at the address that was provided with your post. I have a great network! 🙂

      We’ll talk soon! You’re also welcome to email me at iowacarcinoid@yahoo.com or call me at 515-205-4565.

      My best,
      Jen Holm

  7. Linda Kiene says:

    I am glad to see awareness for carcinoid cancer. I was diagnosed with carcinoid cancer of the small intestine in 2006 and 4 years and 11 months later I found out it had spread to my liver for which I had surgery in April of 2011. I have been taking Sandostatin injections every 28 days for a year and a half as a patient of Dr. Thomas O’dorisio at the University of Iowa Cancer Center. I will be having additional tests in May for an overactive thyroid but otherwise am doing well. I have nothing but good things to say about Dr.O’dorisio and his staff. Thank you for having someone to talk to that understands what we are going through.

    Linda Kiene

    • Hi Linda!

      We’d love to have you join us on our interactive Facebook group “Iowa Carcinoid Connection”. Our group is growing and we all hope to meet in person sometime this summer. In the meantime, we’re all getting to know each other on FB. We’d love to see you out there!

      Many of us see Dr. O’Do and are big fans. 🙂 What a great doc to have in our own back yard!

      Please feel free to email or call anytime.

      Look forward to hearing from you!

      My best,
      Jen

  8. Christi Lauritzen says:

    Jen,
    I am a pancreatic neuroendocrine survivor diagnosed in 2010. I live in South Dakota and have had recent thoughts of trying to form a support group also but not sure how to get that going on my own.
    I also see Dr. O’do and can’t say enough good things about him. Currently I do 30 mg of Sando every 21 days as have pretty significant carcinoid syndrome.
    Any tips you may have for me would be helpful.

    Christi

    • Hi Christi!

      I spent some time researching some of the other state sites listed out at http://www.carcinoid.org. Figure out what contact info (cell phone, email address, etc) you want to use and what social media you’d want to use to get the word out there as well as how you and all of your in-state cancer patients are going to communicate/interact with each other (I chose Facebook – free and easy to use). Then, I spoke to the Executive Director at http://www.carcinoid.org about becoming an official state support group leader. You’ll probably be surprised at how many people you’ll hear from. 🙂

      Same here with the Sando shots.

      Feel free to email me at iowacarcinoid@yahoo.com if you have any questions. Good luck!

      My best,
      Jen Holm

    • Sondra Roll says:

      Hi Jen or Christi,
      I live in Rapid City, South Dakota and I think it would be great if you or someone started a support group for South Dakota. My mom was diagnosed with neuroendocrine cancer in March of 2011. It had already spread to her liver and lymph nodes by the time it was found. They are not sure where the primary tumor is,but most likely in her small intestines, She is also taking Sando 30mg once a month.

      We are just starting to look for a second opinion. We should have done it a long time ago. I am not happy with the doctor she is seeing. When we first found out he pretty much said, well you have anywhere from 3 month to 3 years and we will start the Sando and sit back and wait.

      A few months ago they were gonna do some blood work and get a 24hr urian test and somehow they never got the urian test done. When I brought it up to him he said well I thought we were trying to do this on the cheap. Then added I could order all kinds of tests if you want me too. Then sat back and twiddled his fingers and said what would you like me to do for you?

      Having a somewhere to discuss things like this would really help. I have never had to deal with anything like this before and boy I am sure I don’t know what I’m doing.
      Good Luck and Thanks for listening.
      Sondra

      • Hi Sondra,

        I’m glad you found us. I’m sorry to hear your mom has been dx’d with carcinoid cancer. Unfortunately, most of us are dx’d late in the game and at stage 4. I disagree with the dr on the timeline he gave. Many of us can live 10 yrs or more after dx. I’d like to recommend Dr. O’Dorisio at the University of IA Hospitals. He’s one of the top specialists with this cancer in the country. Here is his contact information:

        Thomas M. O’Dorisio, M.D.
        Professor of Medicine
        Director, Carcinoid & Neuroendocrine Tumor Clinic-Program
        Division of Endocrinology & Metabolism
        Department of Medicine
        Holden Comprehensive Cancer Center
        University of Iowa
        Iowa City, Iowa 52242
        Office: 319-353-7812

        You are correct that she needs to have several blood and urine tests done on a regular basis to track the cancer. Just like other cancers, we do have “tumor markers” that help us understand what the cancer is doing.

        I recommend contacting Dr. O’Dorisio for a consult. I also recommend going out to http://www.interscienceinstitute.com and order a few FREE books – one for your mom and you and one for any dr she will be working with. I also recommend to all newcomers that you form a team of drs that include: surgeon, oncologist, endocrinologist, cardiologist (if there are heart issues), and a gastroenerologist or pulminologist (depending upon where the tumors are/were found. And ONE of those need to be a carcinoid cancer specialist (list can be found at http://www.carcinoid.org).

        There are a few support groups out there… http://www2.acor.org, http://www.cancercompass.com, and there’s a good group out on Facebook. The Facebook one is by invitation only, so if you are interested, find me out on FB, friend request me – then I can add you to the group.

        Please feel free to email me or call me if you have any questions.

        I’m glad you found me! Keep me posted on how thing go with your mom!

        My best,
        Jennifer Holm
        iowacarcinoid@yahoo.com
        515-205-4565

  9. Hi Jen,

    I’m a Hawkeye living in England. I’ve seen Dr O’dorisio as well, and am seeing him on Friday. He helped me get the attention of Dr Caplin in London to get Y90 targeted therapy there last year.

    It’s last minute, but we will be doing the relay for life in New Hampton this Friday as well. Any tips on NET T-shirts?

    If anyone has questions about Y90, please contact me at zwanny@hotmail.com.

    Cheers,

    Mark Zwanziger

    • Hi Mark!

      Sorry I’m replying a little late. Great to hear from you! Dr. O’Do is fantastic! I hope things are going well. How did the Y90 treatment turn out for you? How long have you been fighting carcinoid/NET?

      As far as t-shirts go, ANYTHING that helps create awareness is a GREAT thing! 🙂

      Keep in touch!
      Jen Holm

  10. Jim Dunse says:

    Hi, I too have carcinoid cancer of the lung, atypical, as it has moved into my bones( back bone, collar bone and sternum) I too feel alone, as I have not been able to contact anyone else that has the same atypical cancer. I have all the symptoms diarrhea,& loss of weight. Removal of the right lung is out, as it is in my bronchus and trachea. Anyone else out there with this thing??

    • Yes, Jim, there are others out there. I can get you into contact with them. What state do you live in? I can get you connected to people who are going through what you’ve been going through. Contact me on Facebook and I can connect you with the right groups. I’m out on FB as Jennifer Holm. There are a few really good interactive groups out there on FB, but you have to be invited by a current member. I can get you connected. I look forward to hearing your story and getting to know you!

  11. Milena says:

    hOLA, tuve carcinoide típico en el Pulmond erecho, me hicieron cirugía en Agosto del 2002, osea tengo 10 años, actualmente con Sandostatin lar de 20 mgs…me va muy bien, saludos, si hay esperanza y si hay vida después del carcinoide…

  12. Hi Jen,
    Thank God for the invention of Google because that’s how I found your site! I was diagnosed with Carcinoid Cancer one month ago and just had surgery last week. The tumor was found in small intestine and removed. Prior to surgery, I had a CT Scan which I’m told had no “areas that glowed or lit up”. I live in Omaha, Nebraska and wondered if there were any support groups for this type of cancer. I’m seeing Dr. Alan Thorson who has been wonderful. The only way this cancer was found was from a colonoscopy!! It probably saved my life!! Thank you for your help!
    Joanne Hickson

    • Hi Joanne!

      There are a couple of interactive groups on Facebook if you’d like to join. I moderate the Iowa Carcinoid Connection FB page. There’s also a Carcinoid Coffee Cafe on Facebook as well. And Acor.org. Each one seems to have it’s own personality. We look forward to seeing you there! 🙂

      Feel free to email me or call me too.

      My best,
      Jen Holm

  13. Aaron says:

    Hi Jen,

    I just found this site and back in 2008 they found a non functioning islet cell tumor on the tail of my pancreas. I saw the comments stopped back in 2012 and fished around the internet and saw that you are battling with other issues now. My heart goes out to with wishes for a speedy recovery.

    I guess these issues have precluded you from keeping up with this site.

    All the best,

    Aaron

    • Hi Aaron!

      I’m sorry to hear you’re dealing with cancer too. But, they found it – which it the first step in fighting and winning! Yes, unfortunately i’ve been dealing with a lot of other things. I’m under the care of the Cleveland Sarcoidosis Clinic now and hopefully, they will be able to help. I say “hopefully” as they have never seen anything like what’s going on with me before.

      However, when I’m having good days, we’ve had a lot of things going on. I’m working on turning our little state of Iowa support group into a 501c3 Nonprofit Cancer Charity! This will allow us to raise money for Support, Education, and Awareness (SEA). So many people are mis-diagnosed for an average of 5 to 6 years. By the time they are correctly diagnosed, most patients are stage 4 and not curable. It’s so important to get the information out to the Medical Professionals as well as the general public. There are 13,000 newly diagnosed patients every year, with thousands more continuing to be misdiagnosed.

      I hope things are going well for you! You’re always welcome to visit with us. And if you are in Iowa, you are welcome to join our interactive Facebook group!

      My Best,
      Jennifer Holm
      Iowa Carcinoid(NET) Cancer Connection
      iowacarcinoid@yahoo.com

      • Aaron says:

        Hi Jen,

        I am very happy that you responded and my prayers are with you. I am in North East Iowa and definitely would like to be in touch with other special people like us. They think that I may have had this for up to 6 to 8 years before they found it. I missed by maybe half a year to have the surgery be curative. Dr. O’Do is taking care of me and I am receiving the Simatulon Depot regimen.

        All the best,

        Aaron

      • Don’t forget to join our private and interactive group out on FaceBook. Search for “Iowa Carcinoid Cancer Connection” and request to join the group. We would love to have you in our group!

  14. Jennifer Wiese says:

    Hi Jen,

    I am sending prayers your way! My brother was diagnosed with gastrointestinal carcinoid cancer in early July. He went to IA City and they discovered that 90% of his liver was covered with tumors with two small tumors on his lung. He started two rounds of chemo immediately but sadly passed away just one week after diagnosis. I am sure we will never know what caused it or how long he had it. The only symptom was stomach pain for about two months. I had never even heard about this type of cancer before now. My parents and I are having a hard time with his passing. We are just going through what I am sure everyone does thinking if there was something we could have done or the what ifs. I would really like to get involved with increasing awareness about this cancer in memory of my brother. Could you recommend any books, websites, or charities where I could get some more information about this disease? I appreciate all of the hard work you have done! God bless you, Jen!

    Jennifer

  15. Dawn Pruisman says:

    Colonoscopy 1 week ago, found a carcinoid tumor. Seeing my Dr. on Tuesday, hope to get referral to U of I. Glad to have somewhere to go to ask others about the next steps.

    • Dawn,

      I’m sorry to hear that you’ve been diagnosed. But I’m glad you are going to the drs in Iowa City! Because they specialize in Carcinoid and other NeuroEndocrine Cancers, they also know what other complications commonly go hand-in-hand with these kinds of cancers. If you live in Iowa, we have a very interactive group on FaceBook. Do a search for “Iowa Carcinoid Cancer Connection” and request to join. It’s a closed group, so only those in the group can see what you write. We’d love to have you join. Records show that there are over 300 Iowans who have Carcinoid or other form of NET cancer. We are working on trying to reach out to everyone. There are currently 25 patients in our group. We would love to have you join!

      Carcinoid cancer is very complex. Having others to talk to about it helps a LOT! You are always welcome to contact me out here or by email at iowacarcinoid@yahoo.com

      Hope to talk to you soon!
      Jen Holm

  16. Mary Damsgaard says:

    How do you get an appointment with Dr. O’Dorisio? Does he do second opinion and how long does it usually take to see him.

    • To get an appointment with Dr. O’Dorisio, you must first be diagnosed with Carcinoid Cancer (positive biopsy) or other NeuroEndocrine cancer. It can take a couple months to get in to see him. He is usually part of your team as a consultant. Together, you will meet and determine the best course of treatment and a plan for you. Then, you can gather a team of doctors close to where you live (usually a team of: gastrointestinal, oncology, endocrinologist, possibly a pulmonologist if the tumors are in your lungs, or a gynecologist if the tumors are in your reproductive organs, either a general practitioner/family dr or inernalist, and sometimes a pain management team). The team of doctors will implement the treatment plan that you and Dr. O’Dorisio (or your NET specialist) have determined is best for you. I HIGLY recommend seeing an NET/Carcinoid cancer specialist as they know what things to test for, what parts of the endocrine system are typically effected by this cancer and they are on the leading edge of the most up to date knowledge of what is happening for this type of cancer. Most drs who do NOT specialize in NET/carcinoid cancer THINK they know about it, but they really don’t. It’s not their fault – they just really aren’t THE specialists. Go to the best – see a specialist!

  17. Mary Sparks says:

    Just stumbled across this site in my search for answers. I was having stomach cramps, constipation, and diarrhea on and off for the past 6 months. My family doctor finally referred me to a gastroenterologist. After an exam it was found that I had blood in my stool so he performed a colonoscopy and removed a 4 mm pulp. The pulp was sent off to the lab and results came back stating it was a carcinoid tumor. I have appointments with a colon surgeon and oncology doctor next week. Hopefully that is the only spot for the cancer.

    • Joanne Hickson says:

      Hi Mary
      My name is Joanne Hickson and I live in Omaha. I had the same problems you are experiencing and decided to have my first colonoscopy. They removed a cancerous tumor in the secum colon and felt that all of the tumor was gone. My surgeon was Dr. Alan Thorson (known to be one of the best in the midwest). My Oncologist is Dr. Tim Huyck (also very good!). They both confirmed and research shows there is no real cure for Carcinoid Cancer. It’s critical for you to have periodic MRI’s and hopefully you’ve had an Octreoscan which checks for any cancerous hormones or tumors that could exist. They haven’t found any type of chemo or radiation for this cancer, so they can only “monitor” you with tests to see if serotonin or histamine (unwanted hormones) may exist in your system. (This is called Carcinoid Syndrome). If that’s the case, they can give you Sandostatin injections which will attack unwanted hormones. Dr. Thorson specializes in colon and rectal cancers and surgeries and was recommended by three hospitals. I went to Methodist hospital for my surgery.
      It was a slow recovery after surgery hoping that follow up tests would be great news. So far, so good! That was two years ago, but I still have to go in for MRI’s every 6 – 8 months.
      If your pulp was removed, it’s so important for you to follow up with a doctor that specialized in colon and rectal practices, but that’s up to you and what you feel comfortable with. I’ve had two colonoscopy’s since my surgery and they did find several polyps which were non-cancerous and removed. You should go on-line and google all areas of Carcinoid which is what I did when I was diagnosed. It really helped and gave me a better understanding of options and expectations.
      I still had some diarrhea after surgery, but it improved over time.
      Good luck with your doctor’s. If I an answer any questions, please let me know. I’m not a doctor but after going through this, I can relate to what you’re experiencing.
      My email address is joannehickson@cox.net.
      Thank you!

  18. Claudia Del Fava says:

    I had diagosed a carcinoid in my rectum. the neoplasia was removed by retosigmoidoscopy. the cromogranin, after four mounths, came down from 270 to 196 and after seven months is 206. I’m proving cardiac symptoms and, I’m atending a cardiologyst to hear what is going on. The carcinoid in Brazil, the country where I live, is not studied as a syndrome. Each doctor works under your speciality and is difficult to understand the all. The neoplasia produces hormones that affects the physiology of your body, you fell really bad and doctors, in my case, where not able to diagnose it during four yeas of my complain. They didn’t believe on me
    Now, I’m trying, as patient and animal anathomopathologist and scientific researcher, trying to find out groups interested in studying this neopladia.

    • Claudia,

      I’m so sorry it took them so long to find your carcinoid cancer. Unfortunately, on average, it takes patients 5 to 6 years to get a correct diagnosis. Most carcinoid cancer patients I know are connected on Facebook.

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