Carcinoid cancer: Want to meet others

@tresjur and @gaylejean. Thanks for sharing your stories about the sandostatin injection problems. As I have never had to have these injections, I'd be interested in knowing what makes them so difficult. Has anyone explained that to you? If so, I'd like the information. Teresa

@derekd Hi Derek: It has been awhile since we have heard from you. I hope you had a good summer. How are you doing? Anything new in your treatments or care? We look forward to hearing from you. Teresa

@amyh2439 I've been thinking about you. You mentioned that you were having some genetic testing. Did you receive any information about that? How is your daughter doing? I wish you well. Please keep in touch! Teresa

@hopeful33250, a simplified explanation is the Sandostatin treatment comes in a kit that requires mixing the drug with a reconstituted solution, then inserted in a special syringe which contains another solution. This mixed product sometimes settles and create a sedimentation that can clog the needle. Novartis, the pharmaceutical for Sandostatin, does provide training for mixing and administering the product and upon request from the patient, will send someone out to the doctor's office. Once it took six attempts
to administer one injection and the nurse was so distraught that I felt bad for her. Thank God I'm not needle-phobic and the injection really doesn't hurt that much. When I was getting a 50mg shot in one injection, though, I would have pain at the injection site the following 3-4 days after. That is no longer an issue now that take the 50mg in 2 injections instead of one.

Thanks, @tresjur, the sedimentation explains why it is so difficult to administer. You are certainly brave to keep at it for six attempts. You are certainly made of sturdy stuff!

@hopeful33250, Sturdy, yes, but mostly fortunate that I get away with an injection every 28 days instead of hours of chemo infusion. I sit among others receiving chemo in the treatment room at the cancer center waiting for my shot to be prepared. I'm wishing and praying that all cancer treatments could someday be minimized to a monthly shot or equivalent.

@tresjur Yes, I understand what you are saying. While carcinoids are pesky, unusual types of cancer there is an upside to them. They are slow growing and don't require some of the powerful drugs that other cancer treatments require. Attitude means a lot, doesn't it? Best wishes to you along your healing journey! Teresa

Had my O scans last week and saw my Doc today. She had great news for me - no evidence of disease. She wants me to continue treatment of sandostatin shots every 28 days as I am stage 4, says the shots are doing there job and suppressing growth. she also wants O scans every 6 months.

@joannem How wonderful! Congratulations on such a good report, I'm sure that you are relieved and happy. It's always good when the treatment plan is working, isn't it? Please continue to keep in touch with us. By the way, how are you feeling?

I'm feeling happy, that's for sure. I had asked how can you tell the difference between carcinoid syndrome and the side effects from the sandostatin and no one had a clear answer for me. At the time that I was put on sandostatin, I was still so sick and weak from my extensive surgery, I couldn't put 2 and 2 together. I can honestly say that the diarrhea has improved greatly, so the tumors must have been causing that problem and the sandostatin the rest. I feel very fortunate that I was put on sandostatin so soon after my surgery. Others that I know were not and their liver mets - well to many to count.