Mayo Clinic Connect
I would like to be in voplved in carcinoid cancer only as that is what I have
@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
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@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.
Liked by Teresa, Volunteer Mentor
@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.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
@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.
@joannem, No surgery yet, but I’ve been on Sandostatin for close to 8 years and never experienced any side effects except soreness at the injection site. Thanks for sharing the good news concerning your latest test results. I’m sure it is relieving to know that you are stable and all is working in your favor. I am cheering from the sidelines.
@joannem I’m glad to hear that the sandostatin has worked so well for you. You mentioned having “extensive surgery.” Would you mind sharing what type of surgery you had and/or the location of the carcinoids? If you are comfortable sharing this information it might be of help to the rest of us, Zebras!
Liked by Colleen Young, Connect Director
Hi- the extensive surgery I had was a right hemicolotomy. I which takes out all of your ascending bowel, 1/3 of your transverse bowel, 6 inches of small bowel, appendix, illium cecum and any other parts in that area. also a small part of my duodenum and some more small bowel and 27 lymph nodes. doc said it started in appendix and grew from there. I was diagnosed with crohns disease for 15 years prior to this. so many of us with carcinoid are misdiagnosed with crohns, colitis, irritable bowel. I questioned crohns when I was diagnosed cause it didn’t quite fit. I didn’t pursue my questions because several members were diagnosed with crohns. O scans showed a tumor in liver and tumor in right kidney. now my oscans show no tumors after 2 years on sandostation
@joannem Thanks for sharing some more of your story. That is good news that your Oscans are showing no tumors after 2 years of treatment. You must be very pleased. The stories people tell of how their carcinoids were diagnosed is always interesting. Doctors usually discover them when they are looking for something else. Thanks again for being part of our Mayo Connect community!
A support group would be helpful, I think. Just to compare treatments others are receiving. I have been living with this since 2002. My mom had the same diagnosis and she lived with it for 24 years before dying at 85. She never had treatments of any kind which is a hopeful prognosis for someone older with this diagnosis. I get a Sandostatin shot 1x/month with a recent increase from 20 to 30 mg.
Is it inherited like MEN-1, are you candidate for PRRT treatment.
@gaylejean I have had 4 octreoscans over the last 7.5 years, however it’s been about 2 years since the last one. I currently take 50 mgs of sandostatin every 28 days. Originally I was given one shot of the 50 mg, but
for the last 2 years the shot is broken down into 2 shots (25 mgs in each hip). With the one shot, the injection
shot was sore for 3-4 days after. I rarely have soreness with the 2 shot procedure. The downside is if the
needle jams, then it takes more attempts to give the 2 shots. My last shot was 9 days ago. It took 2 attempts
to administer the shot in my right hip and 3 attempts in the left. Ouch!
If she waits more than two minutes after mixing it it will jam because it gets thicker. The shot comes with instruction ask het to hand it to you and train her.
Has anyone heard anything about ISI labs possibly having a lot of false positives with their Neuroendocrine labwork due to recent changes in their lab? Specifically, I just got results with huge spikes in both Chromogranin-A (now at 1410) and Pancreastatin (now at 155). My doctor is doing a Triple Phase CT of pelvis and abdomen as a precaution. I do sometimes run a little high with Chromogranin-A due to GI meds/PPIs that I take, but 157 is the highest it has ever been, which is WAY lower than this new 1410 level. I just had normal labs 4 months ago, so something seems off.
@jenchaney727 I’m not familiar with this lab, however, perhaps some of our other members are. Let’s hear from our members to see if they have had any experience with ISI Labs, @gulzar @joannem @joanney @amyh2439 @lucci50 @derekd @lorettanebraska @wordnoid @tresjur
I did some more digging, and it turns out they did not use ISI this time, so I’m tracking down the other lab (MedFusion). And I also learned that it’s more of 3 month trend that matters, so hopefully this was just an anomaly!!
@jenchaney727 Thanks for the update~ I have also had high CgA (in the 300’s) but my Serotonin and 24 HR Urine was all within normal limits so it wasn’t looked at with great concern. While I go to the Univ of Michigan for follow up, most of my lab work for the NET is sent to Mayo. I’m glad that you are feeling more comfortable now.
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