New York Noids Carcinoid Support Group - Upcoming Luncheon

The above carcinoid support group will be getting together informally with fellow carcinoid patients and medical experts in the field.   We will share our experiences, observations, questions and concerns.  We will learn about recent developments of interest. Attending this discussion will be 3 doctors from Mount Sinai Medical Center as follow:

Dr. Richard Warner, carcinoid expert

Dr. Lynn Ratner, oncologist

Dr. Celia Divino, surgeon

Date:  Sunday January 27, 2013

Time:  12:30 pm

Location:  Carino restaurant, 1710 2^nd Avenue in Manhattan between 88^th and 89^th streets.  Menu can be seen by clicking the link below:

 http://www.menupages.com/restaurants/carino/menu

If you plan to attend, contact Emily Zuckerberg at ezuckerber@aol.com or call 917 689 1980.  Because of space limitations, attendance will be limited to 24 people. There will probably be a waiting list. Patients may invite one guest.  If you reserve and then find that you’re unable to make it, please contact Emily immediately so others can attend.  Please RSVP to Emily by January 20^th so she will have an idea of who/how many people will be attending.

A Happy and Healthy New Year to all and I hope to see some of the New York area patients/caregivers on January 27^th.

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.

Sanity Check

This week I went to my primary care physician (PCP) for a physical.  It’s been a while since I had one. I wanted to talk about my cancer situation more than I needed a physical.  I have been going to the same PCP for about 15 years and find him helpful, clear and articulate. 

I explained that I am having trouble finding a doctor who can clearly explain the treatment plans that might be appropriate for treating my disease and how they would affect my quality of life and survival.  Specifically, I am trying to reconcile having a major exploratory abdominal surgery with a watch and wait approach.

In my business, we sometimes use something called SWOT analysis to evaluate opportunities and help make decisions. SWOT stands for strengths, weaknesses, opportunities and threats. 

	Positive Factors	Negative Factors
Internal	Strengths	Weaknesses
External	Opportunities	Threats

In a business situation, looking at all these alternatives can help arrive at a good decision.  I am wondering if it is possible in some way to apply these factors or something similar when making a decision on how to treat my cancer.  Perhaps considering simple pros and cons of the different treatment options would be sufficient.

My PCP is a gastroenterologist and does not have any experience or expertise with neuroendocrine tumors.  He has seen some of my diagnostic test results but not all of my doctors are forwarding information to him.  I explained the following to him, most of which he knew:

At this point I have an unknown primary tumor (which may be in my small intestine or pancreas) and many metastases. Most of these are not in my liver.  Any exploratory surgery would not remove all the tumors but could reduce the tumor burden and might lower my serotonin/5HIAA levels.

The monthly Sandostatin shots have lowered my CgA levels from 25x range to 2x range. But my serotonin/5HIAA levels have not come down; they are still at 5-7 times the normal range.

I have no symptoms and feel excellent.  I used to have very occasional flushing prior to starting Sandostatin treatment.

I have yet to determine if the primary reason for an exploratory surgery is:

1) To remove tumors so I don’t have a bowel obstruction or

2) To lower my serotonin levels so I don’t develop fibrosis

3) Some combination of 1 and 2

 

Despite my high serotonin levels, and the fact that my tumors may have been there for 10-20+ years, I have no symptoms of fibrosis.  Symptoms of fibrosis include diarrhea and heart valve issues.  Not all carcinoid patients get fibrosis – I read an article that said it occurs in approximately 40% of patients¹.

My PCP thought that 40% was not necessarily a high enough percentage to justify an exploratory surgery if the objective was to avoid fibrosis.  If the number were more like 80%, it might be more obvious that I require surgery.  He thought that perhaps I might be in the 60% who might not get fibrosis because I’ve had the tumors for so long and don’t have any associated symptoms. 

My PCP stated that I should definitely shop around until I find a doctor/oncologist that I trust and can communicate with. Ultimately I have to make the decision on the treatment that is right for me. He also reminded me that medicine is not completely science and that there is a lot of judgment involved.  At this point I need more clarity and information before I proceed.  It was a helpful appointment and a good sanity check.

¹ The Oncologist 2008; 13:1264