NETest

Nancy Teixiera, a registered nurse and carcinoid patient, spoke to the New York Noids Support Group yesterday.  She is representing Wren Labs which is working with Clifton Life Sciences. Wren has developed a genetic marker specific to neuroendocrine tumors.  The test measures tumor activity at a cellular level. The NETest is a novel blood-based molecular diagnostic that provides highly sensitive and specific information with respect to tumor status and therapeutic efficacy. The test is unique in that it uses 51 neuroendocrine tumor- specific gene transcripts developed by Wren scientists. The NETest has been developed and validated in over 600 NET patients and can identify the presence and activity of NET cells circulating prior to the formation of metastatic tumor.  The idea is to have the test performed on a periodic basis and see if there is a trend.  The blood test is scaled on a 0 – 8 basis with the levels as follows:

Level 1-4:  low activity

Level 5-6:  medium activity

Level 7-8:  high activity

This NETest can pick up tumor activity unlike Chromogranin A and Pancreastatin which monitor secretion. The question that came up in the group was: What should one do with the information if the trend is upward?  If that were the case, one could work with their doctor to consider modifying current therapy. Examples could include, increasing the dose of Sandostatin, finding the tumor(s) and removing it or some other systemic therapy such as chemotherapy or Peptide Receptor Radionuclide Therapy (PRRT).  This test is individualized and therefore so is each patient’s management plan.

In order for patients and physicians to appreciate the benefit of trending values, the company has offered to give this blood test for free 3 times over a course of 9 months to each NET patient in the group.  This way, each patient would have a baseline to measure their tumor activity.  They have applied for a Current Procedural Terminology (CPT) code and anticipate having this in place by May, 2014. The procedure could then be covered by insurance before the 9 months of free testing is done.  Wren Labs is bringing this test to the attention of patients prior or simultaneously to informing doctors of it.  Nancy has been visiting support groups around the country to inform patients of the test, as well as having discussions with NETs specialists at various national conferences. 

I think the challenge is to get doctors to understand and utilize the test.  Just like anything, if the test shows high tumor activity and there is no good way of finding the tumors or correcting the problem, then what is the benefit of having this information?  This could cause anxiety for patients, which seemed to be a concern to some of the patients in the group.   A few of those in the group suggested that we all go together to Branford, CT, where Wren Labs is located to get the test done together.  It would be like a Noids field trip! 

I’m inclined to go ahead and get the blood test.  It is a very low risk procedure in that I don’t need to take any medications or get scanned and it could help others with this disease in the future.  We’ll see what happens. 

If anyone else would like to get the NETest, you can contact Nancy Teixeira at nancy@wrenlaboratories.com

 

A Bump in the Recovery Road

I am now nearly 5 months post-surgery and things have been going reasonably well.  I am back to work but don’t have nearly the stamina I had pre-surgery.  After 5 days of working, I am very tired.  In the past month, I’ve had 2 incidences of severe abdominal pain.  It starts feeling like I was kicked in the stomach, then goes into severe pain with what feels like contractions or spasms.  The first time it happened, it was on a Friday night and I took a tramadol (pain killer). That helped me to sleep and I felt fine in the morning.  The second time was on Super Bowl Sunday and no, I was not eating tons of fatty foods and drinking beer!  It started the same way with the kicked in the stomach feeling, then went to contractions.  I did not take a tramadol until after the Super Bowl ended because I was trying to watch it.  I did take the tramadol around 10:30 pm but that time it did not help me get to sleep.  At about 3:00 am, I was vomiting and still in severe pain.  The next morning I went in to see my primary care physician and he said that I might have had my bowel kink and then unkink – that can cause this type of pain.  He said he did not think that I was having an obstruction at that time and if I were, I would be quite bloated.  I started to feel better later in the day on Monday.  I messaged my oncologist and she said that the nurse practitioner would talk to me about it when I came in on Thursday February 13^th

At my appointment, the nurse practitioner explained that this type of pain can come from a bowel surgery.  She said it could have been a “kinked bowel” or partial obstruction but did not know for sure.  She said that if it happens again, I should get to a radiology facility and get a KUB which stands for kidney, ureter, bladder.  A KUB is an x-ray of the chest and lower abdomen and is used to detect bowel obstructions.  I didn’t get the impression that even if they knew exactly what the problem was, that there was a good solution for it.  Nonetheless, I’ll ask my primary care physician how I might get a KUB quickly, should I need one.  I would prefer not to go to the emergency room because the wait would be long and who knows what else they would do besides a KUB.  Anyway, this really threw me off as I have had a pretty painless recuperation until now.  I’ve already used two sick days for abdominal issues and at this rate I’ll be out of days well before year-end.  I’m hoping this doesn’t happen again but I don’t know what I can do to avoid it or mitigate the pain since I don’t know exactly what is going on.  Some other patients have suggested taking fish oil or drinking coke syrup when it starts to hurt.  I asked the nurse practitioner about this and she said that she had not heard that these things work but there is no harm it trying it if I want to. 

Because of these abdominal issues and the fact that I was not eating much for a day or two after each event, I lost another 2+ pounds this month.  I was hoping to get my weight stabilized to I could figure out what size I will be but now my “new” clothes are getting a bit loose on me.  Oh well, that is a minor issue relative to the pain.  I’m hoping that this is not going to be a recurring problem.   

We Are Giving Ourselves Cancer

In yesterday’s New York Times, there was an editorial with the title above. The subject was the extensive use of CT scans and how we are “silently irradiating ourselves to death”.  The Op-Ed was written by two doctors at San Francisco Medical Center.  It generated a lot of comments, most of which were directed at the lack of clinical evidence regarding their theory. Nonetheless, this subject is near and dear to my heart as a cancer patient who undergoes a CT scan at least every 6 months.  Since my diagnosis in August 2010, I have had 8 CT scans!  My concern is that the radiation from CT scans can cause cancer.  My question is: What if you already have cancer?  I’m trying to understand the risk of missing something by not doing regular CT scans versus the risk of getting another type of cancer from all the radiation.  I’ve spoken with my oncologist about the frequency of my CT scans since I have been concerned about this for a while.  She said that if there were no cancer, we would not be doing CT scans but since I do have cancer, the CT scans are appropriate to monitor for changes.  I really do not know how to evaluate my risks; i.e., is the risk of radiation from the CT scan higher or lower than the risk of not catching cancer progression in time if we spaced the CTs farther apart?  Would an ultrasound or MRI be a better way to measure progression?  My doctor says an MRI would be better for liver tumors but not for other abdominal lesions.  Perhaps less frequent CT scans would be an appropriate approach?

The link to the NYT editorial is below:
http://www.nytimes.com/2014/01/31/opinion/we-are-giving-ourselves-cancer.html?_r=0

One of the ACOR list members posted an X-ray risk calculator that can give one an idea of their exposure to radiation and their additional cancer risk.  You can access the calculator at http://www.xrayrisk.com/.  I have no idea how credible this source is in evaluating radiation risk but it at least gives me a “radiology risk budget” and helps me to quantify the risk.   I put in my CT scans, 68-GA PET, mammograms and other radiological tests but not my dental x-rays and the small bowel x-ray series and came up with the results below.  My additional cancer risk from the tests I’ve already had is 1 in 84 or a 98.8% chance of having no effect from this exposure.  Again, I have no idea how accurate this calculator is but given this information, and my current stage 4 cancer diagnosis, I’d say it’s ok to keep doing CT’s. Perhaps the NYT editorial was overly alarmist?  Am I overthinking this whole subject?  I’d be interested in what others think about these risks.

Beth's Current X-Ray Risk Report

Study	Gender	Age	# of Exams	Dose (mSv)	Additional Cancer Risk
DEXA Scan (Bone Density)	Female	45	1	0.001	0.000000%
Chest, Abdomen and Pelvis CT	Female	51	2	42	0.274400%
Chest, Abdomen and Pelvis CT	Female	52	2	42	0.265227%
Whole Body PET	Female	53	1	14.1	0.086000%
Neck CT	Female	53	1	6	0.037000%
Chest, Abdomen and Pelvis CT	Female	53	2	42	0.256361%
Chest, Abdomen and Pelvis CT	Female	54	2	42	0.247791%
Mammogram (unilateral)(every other year)	Female	40-52	7	2.8	0.022000%
		Totals	18	190.901	1.188779%

An Additional Cancer Risk of 1.188779% is equal to 1 in 84 chances.

Or said another way, a 98.811221% chance of having no effect of the above studies.