• Julitina's Avatar

    Julitina wrote on suebo's wall

    Hi suebo., I will be praying for you, that your have a successful surgery and quick recovery. Is surgery to get primary?
    Thank you for all the info, and the websites. I have been so blessed by info on the carcinoid.org site. The videos that you can view on their site are so informative. Maybe I need to go take another look at it myself. Perhaps I heard what I wanted to hear. I have read so many accounts of others experience with carcinoid, even mets to liver, just hadn't heard of it spreading to other places. Well, I will be sure to share so next person who is dealing with similar situation will know others are out there. I agree with other post on your homepage, every case is different. Again, many have lived for years with small intestine carcinoid met to liver. I know surgery on primary and treatment of some kind on liver are important. I know each case is unique, so great medical network and information from experts in this field are necessary. Faith in God is instrumental in my life.
    Keep me posted on post surgery recovery, remember there are prayer in your behalf.
    Also I felt much better after surgery to remove primary.
    Blessings,
    Julie

    1 Comment
    • suebo's Avatar
      suebo

      Thanks -- I appreciate all the support and prayers from all. This is all happening so fast now -- seems like I waited and waited for appts -- now in about a week I'll be out there having very MAJOR surgery!! I guess its better I don't have much time to think about it - LOL. I will keep you posted and am so glad to hear the carcinoid sites have been helpful for you.

      almost 4 years ago
  • Julitina's Avatar

    Julitina wrote on jacquiepurple's wall

    Hi Jacquiepurple, thank you for responding to my question. I will definitely be praying for you. I did not see other carcinoids on this site at first. I left my DX under small intestine cancer, tried to change it now...This has been called a rare cancer, at the beginning Oncologists I saw called this neuroendocrine cancer, I was not sure carcinoid and neuroendocrine were same. Well, the pathology from my liver biopsy in the beginning was believed by two pathology groups, one at UCSF, a top rated cancer center, to be very aggressive. After pathology reports from surgery they believed, based on Ki-67 levels, it is intermediate, well differentiated. So thankful for changed report, first I realized that even biopsies could be wrong.
    I see that you are on octreotide. I was getting monthly injections beginning at 20 a month, increased to 40, until my insurance refused to pay for the higher dose. Scans showed continued growth of tumors in liver throughout sandostatin injections. That was when same surgeon who said liver was inoperable decided it was best option. I had some low blood sugar episodes during sandostatin injections, first week after was the worst at the high dosage. In the last months on it I was having extreme fatigue, painful joints... Painful episodes in abdomen had returned, diarrhea was intense, so didn't see that the sandostatin was helpful. Could have been that the tumor load in liver was the real culprit. After recovery from liver surgery no carcinoid symptoms, only episodes of intense abdominal pain,maybe food related?
    For the last nine months I have not had sandostatin, or any treatment, just take occasional pain med, if needed.
    I am glad to hear that the sandostatin is working for you. I have seen many with carcinoid that live many years. My faith is in God, I am a believer in Jesus Christ. I trust in Him, His peace, His love helps me in the darkest hour!
    I pray you will experience His love for you more and more, you are never alone, He is with you!
    Blessings,
    Psalm 103 is very encouraging. Psalm 118:5,14,17 encouraged me in a very dark time.
    "Out of my distress I called upon The Lord; The Lord answered me and set me free in a large place.
    The Lord is on my side; I will not fear, What can man do to me?" Ps. 118:5-6
    "The Lord is my Strength and Song;And He has become my Salvation.
    I shall not die but live, and shall declare the works and recount the illustrious acts of The Lord." Ps. 118:14, 17
    Julie

    1 Comment
    • jacquiepurple's Avatar
      jacquiepurple

      Wow! You are my hero! I too an a believer and I believe he is not done with me just yet. I teach full day Kindergarteners and I love my job! I am trusting in Him that I will continue to be stable on the sandostatin and not have issues with increased dosage that my insurance will not pay. I have had no issues with flushing or diarrhea thank goodness . I did have my thyroid out since they thought cancer might be there, but praise there was not cancer when the pathology report came back. I am holding on and living my life as normal as possible, but I still get scared and sad at times. I will continue to pray for you!

      almost 4 years ago
  • Julitina's Avatar

    Julitina wrote on SueRae1's wall

    SueRae 1, thank you for responding to my question. I am very thankful for the support and "hugs". I am trusting God, believing for many good days ahead. I have great peace in all of this , I am thankful for each day. It gives me greater compassion for any suffering with any illnesses. I will be praying for you, I believe knowing the Love and comfort from God brings such peace. I pray you know that you are loved by God! With all the "goodwill" you have you must be focusing your attention on helping others. I am encouraged by this example. I know it is better to help and encourage others than to focus on any problem, especially one that has such an unknown outcome.
    Better to take care of God's business, (loving others), and let Him take care of mine...
    You are so appreciated,
    Thank you, I'll be praying for you,
    Julie

  • Julitina's Avatar
  • Julitina's Avatar

    Julitina asked a questionSmall Intestine Cancer

    Carcinoid cancer stage IV, anyone know cases of multiple sights of tumors after primary and liver tumors treated/ removed?

    4 answers
    • jacquiepurple's Avatar
      jacquiepurple

      I have 4 carcinoid tumors. The primary one is in the stomach, 2 are outside of the pancreaus, and one is in the diuilum ( spelling?). I am on sandostatin and that seems to be working. Surgery is out of the questions for me since I would have no quality of life.

      You have been though a lot. Hang in there! I always think that information from multiple sources are helpful , but overwhelming at the same time. Reach out to all medical guidance that can trust.

      I am praying for you! Don't give up!

      Jacquie

      almost 4 years ago
    • suebo's Avatar
      suebo

      Hi Julie -- I have carcinoid also -- am having surgery in mid July. There are many carcinoid sites on the internet. Www.heartlandcarcinoids.com (I think) has a list of neuroendocrine specialists --be sure you are using one of them. I am surprised anyone tried chemo with you -- everyone knows neuroendocrine does not respond. I have learned a lot from these sites -- one option is PRRT -- have you heard of it? Go to www.prrtinfo.org or com. Also consider some alternative methods -- they have worked for others -- may help slow down or shrink tumors for you. Don't give up -- keep researching and look into all the carcinoid websites -- there are several good ones and they will all be very helpful to you. (google neuroendocrine or carcinoid for sites)

      almost 4 years ago
    • suebo's Avatar
      suebo

      Oops -- got those websites wrong. www.heartlandcarcinoids.org and www.cardinoid.org has the info on neuroendocrine specialists in the country.

      almost 4 years ago
  • Julitina's Avatar

    Julitina wrote on Joachima's wall

    I will be praying you have a wonderful time at your concert. I know battling cancer is life changing, then dealing with any family issues can seem overwhelming. Hope your husband is doing well. You are very strong to be at a point to continue with life! Praying God's blessing on you.

    3 Comments
    • lucky1571's Avatar
      lucky1571

      The one thing I have found since my cancer dx was how much christian music has helped me be more positive and relaxing.. Thanks to a good friend of mine for giving a disc, while I was in the hospital recovering. Keeping you and your family in my prayers. Good Luck with your concert.

      over 4 years ago
    • Joachima's Avatar
      Joachima

      Julitina and luck1571 - Thank you so much for your prayers as I step out once again to fulfill what I believe is God's calling in my life - to share the songs that I have written to encourage and uplift others. This has been an overwhelming couple of years but God has always been near and has been our strength & inspiration. So many people have supported us through all the disappointment and pain, now it is time to give back, even in this small way. My husband is recovering as well, and he runs the sound equipment when I play. Your prayers mean so much. God bless each of you & your families as you continue on your journey. I'm so glad for this site to share & meet others like you.

      over 4 years ago
    • Carol-Charlie's Avatar
      Carol-Charlie

      I have found along my life's journey... I am where God wants me to be. If not - HE MOVES ME! Since diagnosis, when I asked Him to take my hand and lead me. Life is wonderful, not always a walk in the park, but I relax knowing I will follow Him until I follow Him home and hopefully he'll let me stay!

      over 4 years ago