My Third Sandostatin Shot ~ The Tumors Have Grown

I just went to my doctor to get my third Sandostatin shot and it seems that Sandostatin is not working. Earlier in the week I went for some scans and, after reading the results, the doctor decided not to give me a third shot. I’m a little dismayed because the decision seems to be a bit hasty but, I guess she knows what she’s doing. She said that there a stronger doses but, that’s usually only given AFTER the Sandostatin stops working on existing patients. She suggested chemo as my next step but, I have to admit, I am a bit worried about that.

Previously, my doctor told me that my tumors were categorized as “intermediate” meaning that the tumors were not slow growers and were not fast growers but were in the middle. She said that they were now considered, in her opinion, to be more aggressive and no longer intermediate. She said that there was significant growth in the tumors located in my liver.

Here’s what makes me worry. My doctor has used Sandostatin alone and is now suggesting chemo alone but, I have just done a bit of research….about 10 minutes worth…and have found that it seems they need to be used together. Here’s a quote from Carcinoid.org (Click this link for more information):

How does Sandostatin work in conjunction with chemotherapy?

Sandostatin when given in large doses (if OctreoScan is positive) along with alpha interferon (with which it works synergistically) causes tumor regression in 2/3 of the cases.

So, I’m not getting it..why has my doctor taken such a differing approach than what seems to be a proven method to shrink the tumors? I will look into this further…of course but, I’m a bit taken back at my doctor’s current approach. AND….to be honest…a bit frustrated. I’m starting to feel that I may not be getting the best of care. I think I need to find out if my “OctreoScan is positive”. I am fairly sure that it was.

I will keep you posted,
Ed

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7 Comments

  1. My husband was diagnosed in June and had a large tumor in the center of
    his pancreas, mets to the liver with numerous nodes, some lymph nodes and a small quadrant of his stomach, he has received threeSandostatin LAR shots with no side effects and his “main” doctor said he was not being treated as aggressively as such an advanced patient should be. He has been on Afinitor, a daily pill, for 2 weeks and is feeling well. He looks well, as well and even gained 3% body fat ! (I can do that before finishing this letter!). His main doctor also found that it’s not a carcinoid PNET, it’s an even rarer form. We feel we are in great hands. If you want to call me, you can. Just email me.

    • Wow, that’s great. May I ask who you are seeing and at what hospital? I have tumors in my liver, femur, collar bone, lymph nodes, colon and maybe a few more places but, I’m not sure. I just went for a consultation to see if I can get a new perspective.

      • If you give me your phone number I will call you.

        Also, go on the main website of carcinoid.org to read and see videos about this and other issues. Extremely important info. And you can find a list of support groups for people with neuro-endocrine tumors.

        Weber are you located?

  2. We are in north Jersey and the doctor you should be seeing is in NYC. I am hesitant to put my phone number here. Want to send me yours?

  3. Pingback: I Finally Have a Plan to Fight My Cancer | Carcinoid-Cancer.com

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