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
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.
Ah, Beth! Those bumps are no fun! I think everyone I've talked to that is taking Sandostatin LAR has encountered those at some time, and some folks get them with every shot. I think you may have what I call a "nervous nurse" or one who just doesn't have the gift with a sando shot. Have you noticed how the nurse handles the injection? Is it slowly rocked before giving it to you? Fast rocking or shaking could cause the stuff to get hard too quickly. I had a few of those bad shots and decided if my insurance company was going to pay thousands of dollars for this stuff, we sure should be getting it right. So when I found a nurse that could give it, I requested her from then on. That has worked like a charm and my only "bad shots" have happened when she is on vacation. I'll have to train another nurse soon as she is retiring this year.
ReplyDeleteAlso important is the placement of the shot and you being in a position that relaxes the big gluteus muscle! The shot should be given in the outer third of the upper half of your behind. You should be lying down or standing with that hip loose and not bearing weight...in other words, if standing, put your weight all on the other leg and let the leg on the side of the shot go limp. Just a few tips that I hope can help. You can also read more tips and hints on the Sando issues at this website: http://heartlandcarcinoids.org/treatment_options/somatostatin_analogues/admin
or check the Novartis website at: www.sandostatin.com.
Hope this helps! Dianna
Thanks for the information. I'll speak with my doctor to see what he thinks and perhaps give the instructions to the nurse, if necessary. Your website has a lot of interesting information - I added it to my blog list.
DeleteI have been getting Sandostatin IM injections for 3 years. After getting them without difficulty for a number of months I noticed after one nurse gave it I had pain and was uncomfortable a few days. I requested my former nurse and back and went back to no problems. I eventually found a second nurse who also was good. Then this week I got a new nurse. The office seemed busy so I did not make a fuss and went with it. Waht a mistake! She was definitely nervous and also I notice she did not shake (roll)medication before giving (a must). What a mistake in not insisting on my usual nurse. Her skill in IM injections poor! Day 4 after shot I am still in a lot of pain. I also heard the noise at the end of injection which was unusual like air and fluid together, just not right. I am going to call the office regarding this. I have viewed on youtube the proper preparation which includes un-refrigerating the sandostatin it a least 30 -60 min in vial before injection to bring to room temperature and the importance of swirling the medication prior to giving (which she did not do) Both my thighs also were painful as well. SPEAK UP and ask for the nurse you know who is skilled. I will Not make this mistake again! I am also going to call the doctors office today and talk to who prepared it.
DeleteSandostatin has a youtube video that shows how this shot must be specifically mixed, drawn up and even gently swirled before given. I've had 3 shots now. One nurse gave it correctly and I had no problem. The other nurse who gave the two shots I had pain and incorrect placement. I am not being shy next time I am only allowing the nurse who is proficient to give it.
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