Monday, October 5, 2015

Tumor Stability and Quality of Life Issues

In late July, I began a phase II clinical trial of a daily dose of 60 mg of Cabozantinib, also known as Cometriq.  This drug is administered once a day with three 20 mg pills.  As previously noted, this is an angiogenesis inhibitor that works to block the blood flow to the tumors.  The clinical trial requires that I have a scan, in my case both an MRI and chest  x-ray, after 2 cycles or 8 weeks. 

When I started the trial, I immediately was very fatigued and after a week or so, I was so exhausted, I could barely get off the couch.  It was difficult for me to breathe, not due to any pulmonary issues, but because I felt my muscles were too tired to inhale and exhale.  My doctor told me to stop taking the drug for 5 days and then to begin again at 40 mg per day (2 pills).  I did this and the exhaustion lessened a bit but then I began to have more problems with diarrhea and weight loss.  My liver enzymes were also elevated as a result of this drug.  My ALT was as high  as 115 (range 7-52) and AST was 105 (range 9-30).  Both were within the range prior to starting the trial.  After about a month on 40 mg, I began to get numbness in my fingertips (neuropathy), had a mouth sore and some red spots on my legs that looked like welts.  I also had pain on the bottom of my right foot that was attributed to the foot part of hand and foot syndrome.  Given this toxicity to the drug, my quality of life was suffering more than I was comfortable with, even if the drug was going to keep my tumors stable or shrinking.

Last week I had my 8 week MRI and chest x-ray and the tumors were stable!  This is great news!  Even better, we decided to lower the dose to 20 mg daily, hoping to stop some or all of these side effects.  I’m hoping to continue to be stable with the lower dose.  We’ll know how that works in another 8 weeks.

Saturday, August 8, 2015

Difficult Decisions

I haven’t posted in a while because I have been dealing with further tumor progression and decisions concerning my future treatment.  A previous MRI in March of this year showed tumor progression.  At that point, my doctor and I decided to increase my monthly Sandostatin LAR dose from 20 mg to 30 mg and run another MRI in July.  Unfortunately, the July MRI showed more tumor progression.  I needed to make a decision on my treatment plan fairly quickly. 

In my previous post, I described two clinical trials of angiogenesis inhibitors that are open and recruiting at Dana Farber (DFCI).  After reading the extensive clinical trial paperwork and discussing my questions with my doctor, I decided to try Cabozantinib.  This drug was approved by the FDA for thyroid cancer in 2012.  As I previously posted, this is a phase II clinical trial, meaning the drug is being tested in this case, for a different type of cancer (NETs) to see whether it works and what might be the best dose.  Cabozantinib is in a class of drugs called tyrosine kinase inhibitors (TKI’s).  I don’t have a huge understanding of the differences between the angiogenesis drugs.  My limited knowledge says that there are two types of drugs that are FDA approved and being used for NETs– TKI’s like or Sunitinib (Sutent) or mTOR inhibitors like Evorolimus (Afinitor).  The link below describes how these drugs work:

The way the clinical trial works is that I will be taking the drug (3 pills) once a day and being monitored by my doctors every two weeks (lab work and check-up). I’ll have an MRI after 8 weeks to see if there has been any change in my tumors. 

If my tumors stay stable or shrink, I’ll stay on Cabozantinib.  If they continue to progress, I’ll get out of this clinical trial and try something else.  I’m not sure if the “something else” will be Afinitor off label or another type of angiogenesis clinical trial.  I’ve been taking Cabozantinib for 2 days now and the only side effects I am feeling are fatigue and a weird metallic taste in my mouth.  The clinical trial consent form listed 125 possible side effects!   That was quite daunting.  So far so good, I hope it stays that way and works to stabilize or shrink my tumors.

Monday, May 25, 2015

Tumor Progression

It has finally happened to me - the dreaded news of cancer progression.  After 4+ years on Sandostatin LAR and debulking surgery my remaining tumors have started to grow and progress.  The good news is there are no new visible tumors. Things were stable until this March when my MRI showed tumor progression in my liver and one of my lymph nodes.  We increased my dose of Sandostatin LAR from 20 mg to 30 mg in March, hoping that might slow down any further progression.  My doctor wants to do another MRI in July to see if the tumors are still progressing.  In July, if the tumors are stable we’ll just continue with the 30 mg Sandostatin LAR. Since there are no approved drugs for mid-gut NET patients that have progressed on Sandostatin LAR, My doctor mentioned some clinical trials that I might be well suited for that are going on at Dana Farber as follows:

1)  Immunotherapy Phase 1B trial of MK-3475 in patients with advanced solid tumors

2)  Angiogenesis inhibitors (new form of chemotherapy) – there are a few choices for me in this category

The immunotherapy trial originally sounded interesting.  MK-3475 is the immunotherapy drug that has been used in advanced melanoma patients that has put some of them into remission.  It works by targeting a protein called PD-L1 that allows the cancer cells to live and multiply without disturbance from the immune system.  MK-3475 is a drug that blocks the PD-L1 protein so that your own immune system can attack the tumor.  Basically, if my tumor tested positive for PD-L1 then I would be eligible to try this clinical trial to see if the drug would work for my NETs. 

Unfortunately, my tumor test was not positive and from what I understand, none of the NET tumor samples tested positive.  I guess it means that this particular pathway to immunotherapy does not work for NETs and from what I’ve heard, most other gastrointestinal cancers.  So if the tumors progress further, it’s on to angiogenesis inhibitors for me.

Angiogenesis inhibitors have dissimilar side effects from most conventional chemotherapy medications because they work very differently. Rather than killing healthy cells along with cancer cells, as many chemotherapy drugs do, angiogenesis inhibitors only prevent new blood vessels from forming. 

At this point, there are no FDA approved angiogenesis inhibitors for mid-gut NETS.  For pancreatic NETs, Sunitinib (Sutent) and Everolmus (Afinitor) are approved.  The clinical trials that my doctor presented to me are for two drugs as follows:

1)  Cabozantinib:  This is a phase 2 trial of a drug that is approved for thyroid cancer. 

2)  Aflibercept:  This is also a phase 2 trial of a drug that is approved for colorectal cancer.  

Both these drugs, like all cancer drugs, have multiple side effects associated with them.  All things being equal (and I don’t know if they are), I’d take the Cabozantinib because it is available in pill form rather than infusion.  Neither of these clinical trials is randomized, meaning that there is no placebo arm so if I do one of them, I will definitely be getting the real drug.

My issue with angiogenesis inhibitors is that they seem to work better for pancreatic NETs than for mid-gut NETs.  My feeling is based on some articles I have read and the fact that they are only FDA approved for pancreatic NETs.  My doctor generally agrees with me but believes that the inhibitors may still work for mid-guts, just not as well as they do for pancreatic NETs.  

She also suggested taking Afinitor on an off label basis, meaning that it is not approved for my specific condition.  If I took Afinitor, at least I would not be subject to the rigorous rules of a clinical trial.  Novartis released information last week about a phase III trial called Radiant-4 that showed that Afinitor met the trial goals for gastrointestinal and lung NETs. This study might be enough for the FDA to approve Afinitor for other NET types than pancreatic.

I asked her if we should consider peptide receptor radionuclide therapy (PRRT). She said that this could be a possibility at a later stage.  She also doesn't think any liver specific treatment makes sense at this point since I have low liver involvement and tumors outside my liver. At this point my tumor load is light and I don’t have too much carcinoid syndrome. The angiogenesis inhibitors make sense to see if that helps slow progression. 

I went to a patient conference where Dr. O’Dorisio at the University of Iowa passed out a treatment chart that showed the different treatments available for NETs and their average time to progression (TTP).  If one looks at the treatment chart, the angiogenesis inhibitors have an average time to progression of 7 months.  That seems like a pretty short time to me but I know the TTP can be much longer for some patients.  My doctor thinks that there may be additional PRRT trials available in the US in the next year if necessary for my case.  It may make sense to partake in that treatment.  I could also go to Europe for PRRT where they are much farther along in the development of this therapy.  I have some time to think about this as I wait for my disease to progress.  Hopefully the progression will be slow.

The link to Dr. O’Dorisio’s chart is below:

Saturday, May 9, 2015


This week’s New Yorker magazine has another great article called “Overkill” by one of my favorite medical writers, Atul Gawande.  It’s about how new medical technologies and partnerships between doctors and health care systems have combined to produce excessive testing and scanning. These often render no value except to find abnormalities that do not need to be treated because they will never cause harm.  He goes into some potential solutions as well.  It is a comprehensive but enlightening article.  Enjoy!

Below are some excerpts as well as the link to the article. 

An avalanche of unnecessary medical care is harming patients physically and financially. What can we do about it?

Stuart Bradford in The New York Times
“Low value care is defined as one of twenty-six tests or treatments that scientific and professional organizations have consistently determined to have no benefit or to be outright harmful.  In just a single year, the researchers reported, twenty-five to forty-two per cent of Medicare patients received at least one of the twenty-six useless tests and treatments.

“The virtuous patient is up against long odds, however. One major problem is what economists call information asymmetry. In 1963, Kenneth Arrow, who went on to win the Nobel Prize in Economics, demonstrated the severe disadvantages that buyers have when they know less about a good than the seller does. His prime example was health care. Doctors generally know more about the value of a given medical treatment than patients, who have little ability to determine the quality of the advice they are getting. Doctors, therefore, are in a powerful position. We can recommend care of little or no value because it enhances our incomes, because it’s our habit, or because we genuinely but incorrectly believe in it, and patients will tend to follow our recommendations.”

“Overtesting has also created a new, unanticipated problem: overdiagnosis. This isn’t misdiagnosis—the erroneous diagnosis of a disease. This is the correct diagnosis of a disease that is never going to bother you in your lifetime.”

“H. Gilbert Welch, a Dartmouth Medical School professor, is an expert on overdiagnosis, and in his excellent new book, “Less Medicine, More Health,” he explains the phenomenon this way: 'we’ve assumed, he says, that cancers are all like rabbits that you want to catch before they escape the barnyard pen. But some are more like birds—the most aggressive cancers have already taken flight before you can discover them, which is why some people still die from cancer, despite early detection. And lots are more like turtles. They aren’t going anywhere. Removing them won’t make any difference'.”

“We’ve learned these lessons the hard way. Over the past two decades, we’ve tripled the number of thyroid cancers we detect and remove in the United States, but we haven’t reduced the death rate at all. In South Korea, widespread ultrasound screening has led to a fifteen-fold increase in detection of small thyroid cancers. Thyroid cancer is now the No. 1 cancer diagnosed and treated in that country. But, as Welch points out, the death rate hasn’t dropped one iota there, either. (Meanwhile, the number of people with permanent complications from thyroid surgery has skyrocketed.) It’s all over-diagnosis. We’re just catching turtles.”

“Every cancer has a different ratio of rabbits, turtles, and birds, which makes the story enormously complicated. A recent review concludes that, depending on the organ involved, anywhere from fifteen to seventy-five per cent of cancers found are indolent tumors—turtles—that have stopped growing or are growing too slowly to be life-threatening.”

“We now have a vast and costly health-care industry devoted to finding and responding to turtles. Our ever more sensitive technologies turn up more and more abnormalities—cancers, clogged arteries, damaged-looking knees and backs—that aren’t actually causing problems and never will. And then we doctors try to fix them, even though the result is often more harm than good.”

Monday, March 30, 2015

Black Raspberry Powder

Since my surgery in 2013, I have had problems with bowel movements – everything from frequency size, color, timing and consistency.  Prior to surgery, I had no bowel issues, basically one bowel movement a day every day.   My issues post-surgery seem to derive from having a shorter small intestine and not carcinoid syndrome, which causes diarrhea in a lot of people.  My doctor has had several suggestions over time such as eating more soluble fiber, CREON (a pancreatic enzyme to help digestion), taking benefiber daily and Imodium as needed.  Some of these helped marginally but my bowels never returned close to “normal” like they were before surgery.Over the years I had heard about people using black raspberry powder (BRP) for relief of diarrhea due to carcinoid syndrome.  In my opinion, Lucy Wiley, another blogger, is the expert on BRP.  You can find links to her blog describing how to use it and its benefits here:

Prior to reading the carcinoid message boards I had never heard of a black raspberry much less black raspberry powder.  BRP is a powder made from dehydrated black raspberries.  Dr. Woltering at Louisiana State University is a strong proponent of BRP and believes that it inhibits tumor angiogenesis.  Tumor angiogenesis is the sprouting of new blood vessels that enable tumors to grow.  There has been a lot of research done on BRP, mostly in labs and on mice, but no human clinical trials that I know of.  Dr. Woltering’s paper on BRP and its angiogenesis properties can be found here:

After years of hearing about BRP and its benefits, I decided to try it myself in late February.  I looked into the suppliers of BRP and found Berrihealth ( .  Lucy Wiley is also using this supplier for the BRP. The only other source I have located is Nutri-Fruit that can be bought here:

Dr. Woltering suggests the following protocol:1 gram of BRP per kilogram of body weight. 1 quart of lukewarm water. Mix in the BRP and water.  Stir and refrigerate overnight.  The next morning, put the liquid through a strainer to eliminate the residue and seeds. Drink the quart of BRP throughout the day until finished.  I also follow Lucy Wiley’s very good suggestion of storing the BRP mixture in two Snapple bottles. 
Thanks to Lucy for this idea

In order to follow this protocol daily, one needs a lot of BRP.  The best way to get a large quantity of BRP from Berrihealth is to go on their website and contact them by email or phone. You must notify them you are a NET patient to order the BRP in bulk. 

The contact information is here:

They sell a 1,500 gram 3-pack of BRP for a substantial discount per gram.  Depending on how much you weigh and if you are following the higher dose protocol above, the cost could be around $8 a day.  When you buy a bulk package from Berrihealth, 5% of the proceeds go to carcinoid cancer research.  Here is a picture of one of the BRP bags:

The dosing for Dr. Woltering’s protocol is as follows:

Body Weight in Pounds =
Body Weight in Kilograms (kg)
BRP in grams (gr) daily

As you can see above, the dose is quite high for this protocol.  The bag of freeze dried BRP says a serving size of 2 teaspoons is 8 grams.  I don’t have a gram scale so I translated the doses into tablespoons and that is how I measure out the BRP. A tablespoon is equal to 12 grams.

Body Weight in Pounds
BRP in grams (gr) daily

When I received the BRP, I started using 2 tablespoons (24 grams) just to see how my body would react.  I weigh about 150 pounds, so the Woltering protocol would have me using close to 6 tablespoons daily.  I noticed a positive change in my bowel movements within 24 hours and it was even better after a few days.  I was altering between 2 and 3 tablespoons per day in the quart of water. My bowel movements were much less frequent (1-2x per day), much less voluminous and the color was a normal brown instead of yellowish.  I was amazed at the difference! 

The BRP has a mild taste of berries but it is quite thick when mixed and steeped overnight.  I have been adding flavored club sodas, cranberry juice, herbal teas and diet ginger ale to enhance the taste and make it less dense. My bowels were doing quite well but I was having trouble drinking as much as 4 cups a day of the mixture, especially when I was mixing in the tea, seltzer or other liquids.  I lowered the water to 3 cups and used 1 tablespoon per cup of water or 36 grams a day.  At 36 grams a day, the cost is about $5 a day, rather than $8 or more for the higher dose.

So, after about a month of playing with BRP and dosing, I’ve had better bowel behavior. The downside is that I have added a few pounds to my weight.  Better bowel behavior was my primary goal and BRP has exceeded my expectations.  At this point, I’ll stick to the dose of about 36 grams a day mixed with 3 cups of water, hoping that it can also help with slowing my tumor growth. 

I would recommend you try BRP for any of the above described bowel issues.  It could make a big difference in your quality of life. You might even live longer!

Monday, March 2, 2015

Big Apple NETs

The New York Noids patient support group has officially changed its name to Big Apple NETs.  We’ve done that as part of the effort in the neuroendocrine cancer community to stop using carcinoid or Noids in our case and to switch the terminology to neuroendocrine tumors (NETs).  Emily Zuckerberg is the leader of the group and spouse of a NET patient. She has been working diligently to get this group up and running since 2013.  We meet on the last Sunday of each month.  We have a new website at that was designed by Nancy Stone, one of our members and a lung NET patient.  The website is full of information on our group’s and other NET events, news in the NET community, medical centers that treat NETs in the Northeast and resources for NET patients.  Nancy did a great job of learning html and putting this together!

Big Apple NETs is also hosting a lunch with some of the doctors from Mount Sinai on April 12th.  This is a unique opportunity to share experiences with others who have similar concerns and to hear from expert physicians in an informal setting on issues ranging from NET cancer treatments and surgery to follow-up testing and new developments.  We are hoping to host other events in the future.

Please take a look at our new website and join us for a support group meeting or event.  

I love the zebra apple!

Wednesday, February 11, 2015

John Oliver on Marketing to Doctors

I think John Oliver is one of the funniest guys on TV.  He has a show called Last Week Tonight and his latest episode was a hilarious and cynical take on big pharma and marketing to doctors.  You can watch it here – it is about 17 minutes long:

I covered this subject a few years ago – you can see that post here.

I still think the ProPublica website ( is a better way to see how much money your doctor is getting from big pharma than the openpayment site that is part of the Affordable Care Act (