We spent about 10 days in Scotland ending last week. Our son, his wife and son live in Cellardyke near St. Andrews. We take every chance we can to visit them. We love to see them especially the five and a half year old grandson.
While there, we took the wonderful train system to Stirling. Stirling is an ancient town with a castle that dates to the the 14th century. It was perhaps the most used of the royal residences during the reign of the Scottish Kings. The Scots have done a very good job of restoring the interiors of several of the castle rooms to look like they did during the King’s residence. The battles of Stirling Bridge and of Bannockburn pictured in the movie “Braveheart” was fought very nearby.
All in all, it was a very good trip. I regret that I have not pictures of family or castles but my phone with it’s camera died on the first day of the trip.
Health and Missed Opportunity
I have written in Another NETspot GA68 Scan – Next PRRT that I am “on the list” for a treatment called PRRT. While we were in Scotland, an opening in the list occurred for today Nov. 9. The oncology office called and left messages but I was in Scotland and my phone was broken. I finally got the message when it was too late to begin the treatments this week. This was a bit disappointing but could not be helped. I am still on the list for early next year.
Last Friday, just two days after our return, I got my monthly Sandostatin injection for NET Cancer. Since then, I have been experiencing some of the Carcinoid Syndrome symptoms that don’t usually bother me. I mentioned this to my oncologist and he told me that sometimes the injection is done badly or the batch of medication is bad.
Tomorrow (November 10) is International NET Cancer Awareness Day.
This is important to all of us who have the disease. NET Cancer has been one of the least recognized cancers with less research and diagnostic effort than most. Due to efforts like these awareness days, doctors and researchers are becoming more familiar and producing more tools to diagnose and treat our disease.
Most states governors have signed proclamations supporting this day. Though the efforts of my co-leader of Colorado Carcinoid Cancer Support Group (CCCSG), our governor here in Colorado has signed this proclamation.
You can read more about NET Cancer Awareness Day here.
The term “Scanxiety” is often used among cancer patients.
Our disease is often tracked by a confusing array of scans. I personally have had CT scans, ultrasound, MRI scans (not anymore, I now have a pacemaker), octreoscans, a bone scan, and PET/CT Netspot scans (see About the GA-68 Scan).
“Scanxiety” obviously refers to the anxiety, worry about what the scan will reveal. I try to remain optimistic but when you know the disease is incurable, optimism means no progression and for the test eight days ago, I actually suspected that there is some progression (disease is worsening).
I met with Dr. Liu today and, sadly, I was right. However, the report says “mild progression” and Dr. Liu says “tiny progression”. Here are some pictures but be advised that only an expert who has reviewed hundreds of these should try to interpret them:
These scans have several ways of pinpointing tumors. The black and white below can be turned 360 degrees so you can see tumors that might be hidden by organs. The color ones really show up brightly as you scan through the body from head to knees.
The red marks show new tumors, behind the left eye and on the abdominal wall, Some others may have grown a little. The larger black spaces are organs, not tumors.
The tumor behind the right eye was found last year. The tumor just a little lower behind the left eye is new.
So… What now?
Dr. Liu has put me on the list for a treatment just FDA approved in January 2018 although it has been used in Europe for maybe twenty years. The treatment is called Peptide Receptor Radionuclide Therapy (PRRT). I will be able to get it sometime after the new year. A person is eligible for PRRT if they:
Have metastatic/progressive NETs (see above)
Netspot (GA68) shows positive images of the NETs (see above)
bloods tests show that the patient can handle the radiation
I check all those boxes.
What does PRRT do?
Just like the GA-68 scan, PRRT relies on neuroendocrine tumors having receptors for somatastatin which is a protein or peptide our body makes. An artificial version (analogue) of the peptide is combined with a small amount of radioactive material called a radionuclide (currently, in the U.S, this Lutetium 177 (Lu-177). This pharmaceutical is injected into the patient. It travels through the bloodstream and binds to the tumor’s somatastatin receptors which delivers a high dose of radiation directly to the tumor.
This technology for both GA-68 scan and PRRT is called Theranostics. The GA-68 scan (low level radiation) is diagnostics. The PRRT (high level radiation) provides the therapy and they both use the somatastatin analogue. The same technique with different drugs will soon be offered for prostate cancer.
How is PRRT performed?
The therapy product now has a brand name of Lutathera. The protocol approved by the FDA is a series of four PRRT treatments spaced about two months apart. In the U.S., it is typically a full day outpatient treatment. Our kidneys are most susceptible to damage from the radiation, so the patient is given an amino acid solution intravenously which will protect the kidneys. Unfortunately, the amino acid can severely upset the stomach, so the anti-nausea medications are given first. The treatment itself is given after the amino acids and is about a 30 minute injection which is then followed by more amino acids and anti-nausea medicine. The full treatment lasts about five hours.
Lutathera is radioactive! After a treatment, you are expected to sleep in beds separated by at least 3 feet and no sex for seven days. Keep small children away from the toilet that the patient uses for 2-4 days. Stay 3 feet away from other people for 2-3 days. Stay away from children and pregnant women for 7 days. Clothes and sheets must be washed separately. For a good list of restrictions, read here: University of Michigan Lutathera Discharge Instructions. If you fly, the TSA will detect that you are radioactive for over a week, I think.
PRRT is not a cure. Like so many things involved with NETs, each patient is different. They say that over 70% of the tumors have the somatastatin receptors needed. Even within one patient however, not all tumors are guaranteed to have receptors. The treatment can be repeated, which is good.
The year I was diagnosed, 2011, most of these sources did not exist or were not generally known (NETs itself was not known by most people including medical people). The ACOR listserv and the Carcinoid Cancer Foundation were the only reliable things I could find. I got information from these and from conferences that CCCSG sponsored in Denver and from the members of CCCSG. My own doctors claimed that they could give all the information I wanted, but I soon found that they knew less than I did. It seems to me that because they were strictly evidence based medicine believers, they did not think they needed to know anything about NETs. At the time, the only thing on their checklist was Sandostatin and perhaps TACE (Transarterial chemoembolization). I eventually knew enough to know that I had to switch from that oncologist and the HMO she works for.
Times have changed. More treatments and diagnostic tools are available now and more are under development. There are many more sources of both information and support for NETs sufferers. One still has to be careful of old or incorrect information but things are better.
So I have added a page to this site listing the sources (see the menu above.) I also include it here:
CAUTION: Fortunately for us the medical treatments for NETs are being developed rapidly at this time. There may be out of date information. Especially in the videos which are 1 to 4 years old. They are still good starting points.
If you follow this blog, you know that I have been struggling to get a surgeon who would help me with my spinal and sciatic pain. Although the surgery is simple (as spine surgery goes), my neuroendocrine cancer makes me a “special case” because there’s a tumor in L3 and the surgery is for L5 – L4. A surgeon who refused to see me told me to see Dr. Anant Kumar. He takes us “special cases”. He agreed to take me and it seems to be working well.
Here is the problem we are trying to solve. It is called spinal stenosis. It means that the channel that the spinal cord runs in is narrowing and thus squeezing the spinal cord. In my case the canal Vertebral Foramen through the L5 – L4 was narrow for 4 reasons:
Because of disk deterioration the L4 vertebra had moved one way and the L5 had moved another, thus narrowing the channel where they meet by quite a bit to 5.5 mm when it is supposed to be greater than 13 mm. The procedure did nothing to attack that directly If more surgery is needed later, it would be fixed by the complex of wires and screws. We have done a simpler thing on Monday.
Due to aging, the material in the channel has expanded. This is cells growing larger and is called hypertropy. The procedure was to scrape out much of the material in the L4-L5 vertebral foramen.
There was a 14mm cyst on the L4-l5 facet joint caused by friction which happend because of the deteriorating disk. That was removed because it caused pain.
There was some bone spur caused by arthritis on these bones which was removed also because is caused pain.
The anesthesiologist, Dr. Santangelo took extreme care knowing that I had neuroendocrine cancer and that I had had a carcinoid crisis once before. I am told that two times the blood pressure did drift down where it shouldn’t be and he had to put more octreotide in the drip and the BP came back. Remember “special case”? It was good that the surgery took place at Presbytarian/St Luke’s Hospital where my neuroendocrine specialist, Dr. Liu works. Dr. Liu has done much to train the personnel about neuroendocrine and carcinoid crisis.
Both of the doctors working with me were great. I feel very fortunate. The sciatica pain, the numbness, tingling and weakness in my feet is gone!
Dr. Kumar tells me the arthritis pain in the back will remain. That’s OK, assuming that I can walk and fish again.
Thursday I can go to my sister Sarah’s for a huge Thanksgiving dinner. Hurrah!
My NETs specialist, Dr. Eric Liu will be giving updates on neuroendocrine cancer on that day and I hope to attend that meeting.
Other health notes.
I have struggled with back pain and sciatica for two years. It is caused by stenosis which is a narrowing of the passage which the spinal cord goes through. My stenosis is fairly severe.
After trying yoga, physical therapy, chiropractor, spinal injections, pain drugs and mindfulness, I still couldn’t walk or stand without a lot of pain. For almost three months I have been looking for a surgeon who could make it better with a procedure called decompression. They scrape out excess material in the canal which mostly comes from ageing.
I have been turned away by a couple of surgeons because of my NETs. If you have read the blog earlier this year, NETs tumors have spread to my vertebrae. In fact, at least one of the vertebra involved in the stenosis has a tumor. Yesterday, I finally found a specialist surgeon who will do it and it is scheduled for November 20, just 12 days from today! I have high hopes.
If I do not blog more before November 23, Happy Thanksgiving to all!
A few days ago, I had a scan for cancer called a GA-68 or gallium-68 or Netspot. This was designed specifically to detect neuroendocrine tumors. My own results are reported here: The Results of my GA-68 Scan.
EDIT: There has been tremendous response to these two posts on social media. The most frequent question is “Where can I get a gallium scan?”. I now can show you two sources:
I figure it might help other people with NETS to explain what this scan is. If you have had a cancer or know people with cancer, you probably know that a PET (Positron Emission Tomography) scan is used to try to locate tumors and metastases. The traditional PET scans normally do not work with neuroendocrine tumors because the biology of the tumor is different than most cancers so the standard markers do not function.
One year ago, the FDA approved a different kind of marker for use with PET scanners that is specifically designed for neuroendocrine tumor. The GA-68 (commercial name: Netspot) is an injectable that is a binding of radioactive gallium 68 to a somatostatin analog called octreotate. Neuroendocrine tumors have receptors for the hormone somatostatin in over 60% of patients. The tumors therefore will capture the somatostatin as it passes by and of course the radioactive GA-68 bound with it. Although some other tumor types and even some body parts (pituitary gland for instance) have receptors, if you are the lucky patient whose tumors have these receptors, you can get a good picture of where the tumors are by tracking the radiation. The PET cameras take pictures of the radiation in the body. GA-68 scans have been used in Europe for over 15 years already. Apparently, they were not considered profitable enough to develop, test, and get approval for in the U.S. until recently.
You are probably familiar with CT (xray Computed Tomography) scans. These take three dimensional xrays of the body. The new PET machines are actually PET/CT machines. They take the PET and the CT at the same time.
Before now the best we had for neuroendocrine tumors were CT scans, MRIs, and octreoscans which were a much weaker version of the GA-68 type of scan without the attached CT scan.
After my diagnosis, I have had more than six octreoscans (about one per year) and a CT scan every six months and one or two MRIs. This picture shows the difference between the GA-68 and the octreoscan.
What a difference. The black dots are areas of high “uptake” meaning attachment to the marker. My first radiologist showed me my first octreoscan and said “‘nuclear medicine’ is sometimes called ‘unclear medicine’!” These are not my scans. They were uploaded to Facebook for an example.
Combining the CT scan and the Netspot PET scan in one picture is even more powerful.
The gallium radiation has a very short life. We patients are given no warnings at all except to drink lots of water so the radiation won’t gather in the kidneys. NOTE: Although the gallium injectable is more radioactive than the indium-111 used in the octreoscan, the patient actually receives less radiation because the gallium-68 isotope has a much shorter life than the indium-111 isotope.
The old octreoscan routine was to wait until the end of my 28 day Sandostatin injection cycle then I had to take a laxative the night before and fast until I was given the injection. After the injection we waited 4 hours, then had about an hour laying flat on my back without moving in the nuclear scanner. The hour long scan was repeated the next day and sometimes even a third and fourth day. I was warned that I would need a doctor’s letter to pass through an airport within 30 days of the injection. What a pain!
The Netspot PET/CT requires no preparation, no laxative, no fasting. It could be given 15 days after the last Sandostatin injection and they asked that you not use an octreotide “rescue” injection for a day. You are given the injection, wait an hour, then climb onto the scanner bed pictured above and lay still for less than 40 minutes. That’s it! Unlike a normal CT scan there are no breathing instructions during the scan (“hold your breath”, “breathe”). The machine is a bit bigger than a CT scan but is open on both ends so there is no claustrophobia.
Edit: 2017-06-05 Like NETs patients, each medical facility is different. My scan was at Rocky Mountain Cancer Center where Dr. Liu works. Someone just told me that a facility in Arizona is telling patients that they must wait 4 to 6 weeksafter their Sandostatin injection to get a Netspot scan. Also note that Medicare is paying for these scans but how much is paid and the difficulty of getting approval may depend on your add-on plans. As far as all health insurances, I have heard that the scan part is usually covered (perhaps around $1,000). But the Netspot injection is separate and is much more expensive. That is the part insurance companies are unsure about. Additionally, of course, each medical facility may charge differently for the scans.
NOTE: Josh Mailman who works in the nuclear medicine field and has NETs and is very active in our NETs community shared the searchable map link above and these links:
I am not a doctor or medical person (perhaps a professional patient these days). The above is my “not a doctor” explanation of some very complex things. I hope that it helps and is not incorrect in any substantive way.
Today, I met with Dr. Eric Liu and discussed my GA-68 scan results. Both quite positive and surprising results left me feeling very happy. It could have been much, much worse.
Found my primary tumor after 6 years! Instead of a mid-gut carcinoid, I am now a pNET (pancreatic neuroendocrine tumor). I did not expect that. Although this is what killed Steve Jobs and is very often more dangerous than mid-gut carcinoid, it is not a great worry for me because it is small and at the very tail of my pancreas. Dr. Liu says my pancreas looks as healthy as his.
There is some progression. There is some spreading of the disease to several places in my body. Dr. Liu calls them freckles. Nothing very serious it seems.
There are small tumors in my bone in a couple of places. The bone above my eye and two places in my spinal column (in bone, not on spinal cord! Whew!)
The CT scan was wrong last November. The tumors that did not show on that CT scan, though they had appeared in earlier scans, are still in my liver but not looking very active.
The nodules on my thyroid did not light up on the scan. This means that they are not NETs. I think Dr. Liu is convinced that they are a benign form of thyroid cancer. We will continue to watch them.
We will change surveillance to a CT scan once a year and continue with the Sandostatin which is still working. If I get sicker or have more pain, the good scan indicates that I am a good candidate for PRRT (Peptide Receptor Radionuclide Therapy). PRRT works identically to the GA-68 except the gallium 68 is replaced by lutetium 177 (Lutathera) which is much more radioactive and thus capable of killing the tumors. It should be approved in the U.S. within six months which probably means that I can avoid more surgeries.
Today, I turned 70 years old! How on earth did that happen? Below is a picture of my wife Laurie whom I blame for my continued existence more than anyone else. But I also depend on my kids, grandkids and all the rest of my large family (11 siblings) and my friends for their love and support. Of course the medical establishment has done much to keep me going, although I had to learn to battle them when I felt they were wrong.
I just spent 11 days in the Netherlands with Laurie, Derek, Kat and Ansel. It was a great trip during which we could celebrate Ansel’s 4th birthday, Derek’s birthday and my own birthday. We saw the Van Gogh museum in Amsterdam and saw some of the King Day (big holiday) celebrations in Amsterdam. We spent several days in Haarlem as well and had a wonderful tour of the tulip gardens with the tulips at their peak.
Kat had arranged for Airbnb accomodations in both cities and they were very nice. The very nice flat in Amsterdam was beautiful but was a 4 flight walkup. The old house in Haarlem had some stairs that were difficult but we managed.
The trip was marred only slightly by some problems with my sciatica. Fortunately, my
spine doctor had supplied me with a prescription for methyl prednisolone. I filled that and took it with me to the Netherlands which enabled me to get around most of the time. The injection’s good effects are not lasting as long as I would have hoped.
Yesterday was the 6th anniversary of my diagnosis but I had no problems with the Neuroendocrine Cancer on this trip.
As usual with my list of diseases, the day after I got back, Friday, I went to the oncologist’s for my monthly butt dart (Sandostatin injection). Tuesday I meet with my oncologist to discuss the neuroendocrine cancer and perhaps the Netspot (GA-68) scan. Next Monday I restart weekly physical therapy for my spine. The beat goes on.
Today February 28, 2017 is Rare Disease Day.
Several things have occurred today which warrant examination.
The U.S. Food and Drug Administration (FDA) has approved Xermelo™ (telotristat ethyl) as a first-in-class orally administered tryptophan hydroxylase inhibitor indicated for the treatment of carcinoid syndrome diarrhea in combination with somatostatin analog (SSA) therapy in adults inadequately controlled by SSA therapy. This is a pill that will help people with the diarrhea part of carcinoid syndrome (some people up to 40 times a day) while those patients are on somatastatin analog therapy (that’s the octreotide (Sandostatin LAR) injection that I get every 28 days or a newer injection called lanreotide (Somatuline)). Big news for those with the syndrome. Fortunately for me, my syndrome is very mild and occurs very infrequently.
saying this “The main objective of Rare Disease Day is to raise awareness among the general population. The Healing NET Foundation encourages you to share this video of stories and comments NET patients posted on our website and on FB, to let the world know about our RARE DISEASE, Neuroendocrine cancer and Carcinoid syndrome. “
The Lifetime TV channel show “The Balancing Act” had a Rare Disease Day episode this morning which partially featured Neuroendocrine Cancer. The show is now on YouTube:
Point 1. above show how raising awareness of our disease gets doctors and drug companies looking for ways to treat it.
Points 2. and 3. are good parts of the ongoing efforts to raise awareness of the disease. It exists. It affects people’s lives. We all need more treatment options.