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

Scatological Issues and Radiology

On Tuesday November 13^th, I went for a small bowel x-ray series.  The main purpose was to locate my primary tumor. Another reason was to determine if my small intestines were wide enough to swallow a “pill camera”- as is done in a capsule endoscopy.   The test involved swallowing about 16 ounces of a very white, chalky barium compound and then waiting for it to go through the small intestine and into the colon.  Along the way, there are x-rays taken at intervals of between 15-30 minutes. 
 

This is what bothers me about all these perpetual tests and procedures: the process should be explained in advance and not as things go along.  Finally, any possible side effects should be clarified up front.  For example, when I made my appointment for the x-ray series, the receptionist told me it would take “about an hour”.  It took 2 hours and 20 minutes.  The technician who was working with me said that was about normal and sometimes it can take up to 6 hours for the barium compound to travel into the colon.  Not exactly “an hour”.  Meanwhile, I had scheduled a conference call at work for 11:00. My appointment was at 8:30 am, so I thought I had plenty of time.  I missed the call. The radiology location was in a basement so I could not phone or email to inform my office that I would be unavailable. There is no service below ground.  And speaking of side effects, later in the day, I had a bowel movement and it came out completely white!  I gasped as I found this quite shocking!  If someone had made the effort to warn me, I would have been fine with it.

The first time I had a CT scan, my sister in law warned me about the effects of the injected dye.  For those that don’t know what I’m talking about, when dye is injected while you are laying on the CT scan table, it feels like you are urinating in your pants.  The technician refers to this as “you might get a warm feeling”, not that it feels like peeing!  At least I had advance notice on that occasion.

The radiology resident who was doing most of my small bowel x-rays said that they looked normal and that there was no sign of any tumors.  We’ll see what the actual report shows.

Meanwhile, I think my next step is the capsule endoscopy or pill camera.  This test will have me swallowing a “pill size” camera that takes pictures as it goes through my gastrointestinal system.  A few weeks ago, there was a post on the ACOR list about someone doing this test and the camera came out in the toilet still flashing pictures!  At least I have an idea of what I might expect and won’t be surprised if something weird like that happens and no one warns me.  I haven’t scheduled the test yet but I’m guessing it will take about an hour…

Hurricane Sandy Aftermath

It took us 8 days to fully recover power, heat, hot water, and cell/ land line service. For two days there was no water of any kind. We live on the 6th floor of a high rise building and had to go up and down dark stairs armed only with flashlights. We are most fortunate that we did not suffer an emergency. Our apartment was cold and dark and loads of blankets didn’t help much. Our two cats were scared and confused. They know when something serious is taking place. This has been quite an education on what is important in life. 

On Friday, we got the electric back but still had no hot water or heat.  Thankfully, I must be in pretty good shape as I went up/down the 6 flights of stairs with cat food, groceries, a space heater and other necessities about 6 times on Saturday.  On Sunday, the elevators were back and Monday saw the restoration of heat and hot water. It was great to take a hot shower! Finally, internet and cable service returned yesterday. We are officially back to normal.

In business school, we learned a theory called Maslow’s  hierarchy of needs. The hierarchy is a pyramid that starts with basic necessities such as food, water and shelter and ends with self-actualization, which is autonomy and achievement as the highest level.  During the past week, I moved to the bottom of the pyramid as did most of my friends, colleagues and family that lived in the tri-state area. 

I went to work after the office was closed for 2 days (and was happy to be there since work had all the “luxuries” we didn’t have at home). It was still hard to concentrate. I was thinking of things I need to get in order to survive and make the home situation as comfortable as possible.  I had to walk to work since mass transit was not running. We quickly ran out of food, water and batteries as the week wore on.  I was able to get “amenities” at stores near my office - but then had to walk back home with gallon bottles of water and other heavy things and to haul it all up 6 flights of stairs with a flashlight! The so-called emergency lights in our stairwells were out all week!  Batteries were a scarce commodity and even now, I don’t think that there are any D batteries on the island of Manhattan!  On Thursday, I went to at least 6 drugstores looking for votive candles and finally found them at a 99 cent store near my office.

There are still many people who had a much worse time than we did – those that lost their homes, livelihoods, friends and relatives.  Even in our community, some apartments still have no power or heat and I feel quite sorry for what they are going through.

During the past week, I did not really think about my cancer, treatment choices or anything related to my health – just tried to get through the day and take care of the basics.  I rescheduled my small bowel x-ray series but have not spent any time looking things up, reading the posts on the ACOR list or dwelling on my situation.  It’s been quite refreshing to forget about all this cancer stuff for a week. 

Now that I am moving up on the hierarchy of needs again, I have my monthly Sandostatin shot as well as the small bowel x-ray series scheduled for next week.  I am meeting with my primary care physician after Thanksgiving to discuss my situation and choices as it relates to my cancer treatment – hopefully he will give me some perspective on the choices I face.

This morning the temperature plunged to 38 degrees. We are expecting a big Nor’easter today – I hope the power system and infrastructure here in NYC can deal with another storm. A lot of us are holding our breath!

Hurricane Sandy

Wow, it was really damaging here.  I live below 40th Street on the East side of Manhattan and we have no power, cell phone, internet, or landline service.  They say we will not have anything until the weekend, maybe!  My office, however, in midtown has full power and services so I expect to be there a lot this week.

Below are some pictures:



Williamsburg Bridge between Brooklyn and Manhattan

  Unfortunately, I live on the Manhattan (dark) side of this bridge.  Brooklyn is all alight with power.



La Guardia Airport

 Above is La Guardia Airport - still flooded and not sure when it will reopen.  I'm glad I'm not flying this week.  They have not cancelled the New York marathon for Sunday but I'm guessing a lot of runners will not get here.

Downtown NYC Subway Station

The above photo is a subway station in downtown NYC.  They have not reopened the subway but I think tomorrow there will be service above 34th street in Manhattan. 

I'm happy to be safe but I think the no power thing could wear on me soon.  The only hospitals in Manhattan that are working well are NY Presbyterian and Mount Sinai.  Some of the big hospitals like Bellevue,  New York University Medical Center and Beth Israel were evacuated when the power went out and the generators were flooded. 

Many people are much worse off than I am - especially in NJ.

That's it from NYC!

Insurance Woes -- and an update

Throughout my cancer experience my doctor or hospital system has submitted my insurance claims.  I am quite lucky that I have very good coverage through my employer. Owen also has good healthcare so I use his plan as my secondary coverage.  After my visit to Dr. Warner last week, I submitted the bill to my primary insurer, Aetna.  (Dr. Warner does not take any insurance).  Today I received a rejection of my claim. I’m not sure if it is because of the procedure code or an issue with my secondary coverage.  I called Aetna to ask but they are closed on weekends.  Now I have to call from work to figure out the problem. I usually work 50-70 hours a week so it is hard to find time to remember to deal with insurance issues.  I realize now how lucky I am that my doctors have been handling this for me.

I am scheduled to have a small bowel x-ray series on Monday morning.  Monday is also the day that we are supposed to be hit by hurricane Sandy.  I wonder if that is an omen about doing all these diagnostic tests!  I hope I can just get the test done - or if they are going to cancel the appointment, that they give me a few hours notice. 

That’s all I have to report this week.  I’m planning to go out and get some extra water and batteries in case we lose power.

Update as of Monday afternoon:  Last night, the radiology group called to cancel my small bowel x-rays in plenty of time, thank goodness.  I called Aetna and they said that they did not process the claim properly and will resubmit it and I should get payment within a week or so.  The hurricane still has not hit here in NYC but it is quite windy.  One of my friends in NJ had to be evacuated.  As of now, the power is still on and things are ok.  My office was closed today and will be tomorrow as well.  I'm hoping all goes well as the worst is yet to come.