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.
This log should encourage everyone to get copies of their CT Scans, MRIs, octreoscans, GA68 scans, and all reports on scans and procedures and test results. You will often find things that your doctor doesn’t mention. In the past, when I was with an HMO, my oncologist never went over the radiology reports with me and there were a number of things that I needed to know as well as things she should have known but did not pick up on.
I reported on the positive results of my meeting with Dr. Liu in the post Stability, Carcinoid Cancer 2016-10-27. At the time, we did not have the actual written radiologist’s report. It is worth understanding that with chronic disease like neuroendocrine, we get many scans and radiologists typically compare previous scans to the present scan. In this case, October’s scan was compared to the scan from October last year (2015).
That radiology report about the CT scan came to me in the mail Saturday and I was amazed and very happy to read it!
Neuroendocrine cancer – No lesions found in liver (Dr. Liu and I did find a lesion in our meeting and that had not grown, not sure why the radiologist did not) but the previous report had shown 5 or 6 very small lesions. They have shrunk to invisibility!
Urinary bladder, kidneys, ureters – all normal. This is important because I have struggled with urinary bladder cancer recurring for about three years now.
Everything else – normal! Still no sign of the primary tumor. Wish we knew where that little bugger is!
This is HUGE!!! From six visible lesions to one is unexpected, the monthly Sandostatin LAR injections (and of course my good living, Hah!) must be effective. Of course caution is in order, this is a radiologist that has never seen my scans before. Also, even lesions too small to see can start to grow again, in fact, it is said that the primary tumor generates microtumors that seed everywhere else.
But this is an even better CT scan report than I thought at the time of meeting with Dr. Liu. I am certainly really happy and ready to go forward with hope.
All of you who have our disease: Get copies of your scans and reports about scans and test results. At least try to read them. It will teach you things and may have good news.
Tomorrow, Thursday, November 10, is Neuroendocrine Cancer Awareness Day.
Yes, I am a zebra. I have neuroendocrine cancer.
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
Unfortunately, many doctors forget that us zebras actually do exist. The average time to diagnosis for us is about six years!
Keep reading, there are lovely baby pictures below!
My specialist Dr. Liu and I were concerned that perhaps my thyroid function was not good. Since Sandostatin injections can impact that and also ten years ago a nodule was noticed on my thyroid and not really followed up since then, I had an ultrasound last week and the “nodule” was still there. That worried me a lot.
There was also the possibility that my Carcinoid disease was progressing which is always a worry for those of us with the disease. I have been having more episodes of chills in the evening and occasionally night sweats.
Dr. Liu believes the “nodule” is cancer but has not changed significantly in ten years and the test for thyroid function are good. His recommendation is to revisit it in six months. He told me that conventional wisdom is usually to remove the thyroid but that he doesn’t agree when it is this slow growing. I am good with that. The less surgery, the better.
With blood tests and with a CT scan, there is no indication that the carcinoid has progressed. The small tumors in my liver have not changed and blood tests give no indications of change.
Obviously, I am overjoyed. It has been 3.5 years since my liver surgery and the carcinoid has been pretty stable.
Other good news is that the new GA-68 scanner will be used for patients starting next week! I will probably get it in the spring to insure that carcinoid tumors have not spread to any other areas of my body.
My back is still a painful problem. I have degenerative disk, arthritis and DISH (Diffuse idiopathic skeletal hyperostosis – tendons hardening to calcium). I have tried a chiropractor and it’s no help. Hopefully today’s CT scan will give my PCP some clues. I have been attending hot yoga classes for the last eight weeks and that gives me some relief for a day or so, but the pain can still be pretty bad. I think we will be looking at injections in the spine soon.
No news about solutions to the urinary bladder cancer problem as of yet.
I had another day surgery today for urinary bladder cancer and just returned home. For the fourth time, cancer had to be scraped from the inside of my urinary bladder. After the tumor was removed a type of chemo (mitomycin C) was left in my bladder. Although the procedure itself was about an hour long, Laurie and I spent from 9:30am until about 4:00pm in the hospital. I have to wear a Foley catheter for two days and then remove it.
The original anesthesiologist assigned to me was delayed in another surgery, I was assigned another one. He decided to use the same procedures that were used during this procedure in April. He thanked me for giving him a chance to study a disease he had only heard of in school but never seen (neuroendocrine cancer). I made sure that the octreotide was there and ready when I was wheeled to the operation room. In fact, we had to wait for the pharmacy to deliver it, even though the originally assigned anesthesiologist had ordered it. The doctor told me that the pharmacist had to look up recommendations and dosages because they had not used it before. At the pre-operation meeting a week ago, I had given the doctors copies of Dr. Woltering’s protocol, Dr. O’dorisio’s protocol and Dr. Pommier’s protocol.
In any case, all went well.
The larger problem is that this bladder cancer has recurred several times now. This summer, I was given the BCG immunology treatment for six weeks. That is supposed to be 70% effective in preventing bladder cancer recurrence. Obviously, it did not work. My doctor is searching for other solutions. He says that there is some evidence (that means not proven with acceptable studies) that interferon added to the BCG can help. He is unsure of it and also insurance would probably not cover it. I will probably re-do the BCG treatment in any case. My doctor has also checked for any drug studies that I could enroll in. So far, three studies have turned me down because I also have neuroendocrine cancer.
We will have to keep searching. I really do not want to have this procedure every six months until my bladder walls are so thin they have to remove my bladder.
A. I have been seeing a chiropractor for five weeks now, twice a week because I have severe back pain. Two problems plague me:
Degenerative Disk Disease Basically, damaged or worn out disks between the vertabrae. I am the oldest of 12 children and at least 4 of us have this problem.
Diffuse idiopathic skeletal hyperostosis (DISH) Essentially the tendons in the spine start turning to bone. This and the degenerative disks above were first seen because I have so many full body CT scans and a bone scan checking my neuroendocrine cancer. They do not know the causes and there is no cure. It is not uncommon but usually found in very old patients. Darn it! I am not that old yet. Lucky me.
So far the chiropractic treatment has managed to move the pain around but not reduce it much although I do have a few good days which is good. My PCP also prescribed a treatment of prednisone for me. The drug got rid of sudden shooting pains I had, but the rest was not changed.
I have also been trying hot yoga for it, for stretching and increasing flexibility. After an hour of that, I am usually more comfortable for 12 to 36 hours. I’ll keep that up.
B. Next week, I get to see my NETs specialist, Dr. Eric Liu. We’ll decide on my next scans, blood tests, etc. And, I will talk about a little bit of increase in symptoms. Which would be more frequent pain in abdomen, more frequent diarrhea, more fatigue. Of course, I’ll get my monthly Sandostatin injection (or jab as the British say which is appropriate for this.)
C. Finally the good stuff. We love, love, love our new little granddaughter Margot. She is very different from our grandsons. All is well, very healthy with her and her mom.
Last month, in BCG Immunology Treatment Started, I posted about the BCG Immunology treatment that I was undergoing for urinary bladder cancer. Ten days ago it was finished for now. Although the side effects were minimal compared to other things that I have undergone, it was great to be done with it.
I have an appointment for a cystoscopy in about six weeks. They put a camera in your bladder to look at it! Not pleasant, but it will show whether there are any signs of the cancer. I am told that I may have to have another three weeks of treatment in about three months.
In my post May 2016 Scotland and Iceland, I mentioned that I was having a great deal of trouble with sciatica. This is because I have what is known as “degenerative disk disease” in my lower back. The sciatica pain is caused by the vertibrae pinching the sciatic nerve and inflaming it. There has been pain and tightness in my back, both sides gluteous, hamstring and calves. It can be difficult to walk, stand and negotiate stairs. I had a real fear of falling sometimes.
Three and a half years ago, I had a milder version of this. My PCP put me on a three week treatment taking Prednisone tablets. It worked well and lasted for over two years.
I suggested this to my current doctor and he agreed. However, my urinary surgeon said that it would interfere with the imunology treatment. So, with doctor’s instructions, I have been taking far too much ibuprofen and it has started causing stomach issues.
I started taking the Prednisone three days ago! Hoorah! It’s working well. My back and legs are better than they have been in three months and getting better. Hopefully, the improvement will last a long while.
There are lots of cautions and problems with Prednisone. Be careful.
For almost everyone it should only be taken for a few weeks including a taper off. I have five days two tablets; five days one tablet; five days half tablet; five days quarter tablet; for a total of twenty days.
Neuroendocrine Cancer News
I feel lucky to report that I am having almost no problems associated with neuroendocrine cancer at this time.
First, they publish a very good information pamphlet for medical professionals. When you realize that your doctor knows little or nothing or wrong things about your NETs, see if they will read it: NET Primer: Informational Brochure . It’s also pretty readable for us patients.