Sandostatin LAR – A Real Pain in the Ass

I’ve been taking monthly shots of Sandostatin LAR since January 2011.  That’s 23 times. Over the past 6 months, 3 of the shots have given me Sandostatin lumps, sometimes called hematomas.  By definition, a hematoma is a collection of blood outside of a blood vessel.  In reality it is a bump underneath the skin, it does not show up as a bruise but it feels like a marble under the skin. While it is not painful, it is annoying and bothersome, especially when I sleep on my back or sit in a hard backed chair.  I’m not sure exactly why I am getting the lumps. I suspect that the nurse currently working with me is doing something wrong.  

My first lump was after my July shot and it lasted about 3 months.  My doctor was on vacation when I went in for my August appointment. The substitute doctor said that a hematoma sometimes occurs and that it would probably go away.

Meanwhile, my November shot gave me a bump on the right side and my December shot gave me one on the left side so now I have two annoying/slightly painful bumps.  I have no confidence in this nurse’s ability to give these shots and I’m not sure if there is anyone else in the office that can give them.

I have heard from other patients that hematomas can be reduced by administering the drug slowly and warming it prior to injection.  The lumps could be from the shot being done subcutaneously (just under the skin) and not in the muscle tissue.  I’m not sure if these lumps mean the shot is not working as I have no symptoms.  Perhaps the nurse could get some instruction from Novartis, the maker of the drug.  I’ll bring this up with my doctor next month but I really don’t want to be the “guinea pig” for this nurse’s learning curve.

When I was being treated at Memorial Sloan Kettering Cancer Center (MSKCC), I had a bottom decile doctor but very good nurses.  I had 14 Sandostatin shots at MSKCC and never had a problem with residual pain or lumps.  Now I have a competent doctor but an incompetent nurse.  I’m not sure if there is such a thing as a happy medium where I can trust and communicate effectively with my doctor and get the Sandostatin LAR treatments without a hitch.

I am thinking about using a carcinoid specialist who is not located in the New York area. If I take that approach, I would need an oncologist, not necessarily a carcinoid specialist, who would treat me.  Unfortunately, I’m not sure how exactly to identify this local doctor and I’m concerned about how the shots might go, now that I am having a bad experience with a nurse. 

I don’t really consider myself a difficult patient but after my carcinoid experiences, I’m not sure.  I do expect my doctor to be punctual, articulate and clear about my treatment options. I also expect the nurses and other professionals involved in my care to be competent in administering medication and other treatments.  Is this too much to ask?  Do I need to lower my expectations and live with monthly Sandostatin lumps?

I’ve had the same doctors for over 15 years for dental, primary care and ob/gyn so it’s not like I hire and fire doctors often.  I’d be interested in hearing from anyone in the NYC area who has a great doctor and nurses or who is using a local doctor with a far away specialist.