formerly the Colorado Carcinoid Cancer Support Group
Category: NETS Theranostics
Theranostics is a new field of medicine which combines specific targeted therapy based on specific targeted diagnostic tests. With a key focus on patient centred care, theranostics provides a transition from conventional medicine to a contemporary personalised and precision medicine approach.
Yesterday I had the last of the Peptide Receptor Radionuclide Treatment! Wahoo!
For more information about this treatment see my blog here and here.
Although I have only some fatigue today, I know that I will have a few other symptoms for a some weeks. Most people who have had the treatments tell me that the side-effects got less severe with each treatment (typically four treatment, eight weeks apart). This is my experience as well. There are some patients that have severe side-effects throughout the treatment cycle.
Typical side-effects that I typically experience are bad fatigue, abdominal pain (for me only in the mornings), nausea (only intermittent and light in my case) and joint and muscle pain (arthritis for me) is amplified quite a bit.. As today is only the day after and for me most side-effects are delayed a bit, I won’t know how the treatment effects me and for how long until a few days have passed. I know that some patients are not as lucky as I have been and have experienced dangerous and/or very uncomfortable reactions. A good friend had such a strong histamine reaction a few days after the treatment that she was admitted to the hospital.
Too early (7:00 am), the nurse welcomes me. At this clinic, a nurse is assigned to you and one other patient and shepherds us through the day. I love the nurses who do this. We are well cared for. This clinic does two patients in the morning and two in the afternoon.
The other patient, Paul, is already there. He is from Denver also and this is also his 4th treatment. This is a surprise because, in prior treatments, the other patients have been from out of state.
Our nurse hooks us up for the anti-nausea medication IV, somewhat later an IV of amino acids that are meant to protect our kidneys from the radiation is started. The amino acids will run for more than four hours, before the infusion, during the infusion and after the infusion until we are discharged to go home.
Two or three hours after arrival, we walk to the Nuclear Medicine department, pushing our IV poles before us. There the actual infusion of the radionuclide concoction of somatastatin (octreotide) analog coupled with the radionuclide lutesium-177, known as Lutathera, is hooked into the IV to drip into our arm for about 40 minutes.
After the infusion is done, we take the IV poles and walk back to the clinic where we each get a private room because we are radioactive now. For me, I went by wheelchair because I was quite light headed upon standing up from the infusion chair. That stayed with me for at least and hour and only gradually dissipated after that hour.
After that we wait for a couple hours while we snack and are basically under observation to make sure we aren’t having any strong adverse reaction.
Now the Celebration
I have had the good fortune to meet Joe Harris, Oncology Account Mgr, Advanced Accelerator Applications (company that makes Lutathera) at a couple of conventions. Two weeks ago when he found that I would be having the final Lutathera treatment, he promised to bring cake to the clinic. As you can see from the picture above, he brought cupcakes during the waiting period after the infusion. He brought enough for the patients, the clinic staff and the Nuclear Medicine staff. They were really good!
The clinic has a little tradition of “Banging the Gong” after the 4th treatment.
I have been very fortunate to be treated by such a wonderful group of people.
My Dr. says that we cannot perform scans (to determine if the tumors have shrunken or disappeared due to the treatment) for months. This is because the tumors usually swell for a while after they are attacked by the radiation. So…. there will be a CT scan in about three months and the GA-68 PET/CT scan at about six months (the definitive scan).
But, here’s a known result. I have had night sweats and evening chills daily for 10 years. Some oncology nurses call this tumor fever, they can be a misery. They have not happened at all for the past three or four months. Something good has happened!
I had the third Peptide Receptor Radioisotope Therapy (PRRT) on Friday three days ago.
So far, there is not a lot to report. The side effects seems to be less severe and less frequent than they were for the earlier treatments.
In fact, each treatment seems to “get better”. I told this to one of the nurses in the clinic today when I went in for my monthly Sandostatin injection. She said “You must be getting used to it.” I said, “I’m not sure that it’s good to get used to being highly radioactive!”
The symptoms that I have had so far since the third treatment:
Fatigue – very definitely need a long nap in the afternoon and not much will to do anything physical.
Lower abdominal pain – each morning for a half hour or so there is sharp pain in my lower abdomen.
Nausea – a little nausea every morning and yesterday morning, I worked on cleaning a gutter in the morning and the nausea took over much more intense for 4 to 5 hours. I better wait a week to do any more of that.
Joint/muscle pain – I awoke this morning with rather difficult pain in many of my joints joints, mostly those with noticeable arthritis or old injuries. It reduced very much in severity after 30 to 60 minutes. It is still there five hours though.
All the above happened after the other treatments, but this has been less severe so far.
Except for one thing. My blood pressure spiked very high during the actual infusion of the Lutathera. One nurse said that she had never seen blood pressure that high. Now, 24 hours later, it has reduced to much less high but still not in the normal range.
The clinic doctor and nurses had me make an appointment with my cardiologist for within the next week. It should be interesting since I am already taking the maximum of my current bp medication.
“Beware the Ides of March!” may have been suitable for Julius Caesar, but the Ides have been good to me this year. Yesterday was 2 weeks after my 1st PRRT treatment and all is well.
The first week after PRRT, I had some of the symptoms which were predicted: nausea (not much), pain in abdomen ( only once or twice a day, fatigue ( i was sleeping almost 12 hours a day), Joint and muscle pain for parts of my day.
The second week after PRRT, much of the fatigue is gone, there has been indigestion on a couple of evenings, the abdominal pain has stopped occurring. The joint and muscle pain is still with me but is tolerable.
I am no longer a radiation danger to children, so I can see my grandchildren.
For about a week, I have been walking outdoors for a half hour to a full hour (not fast but steady)(except for the day of the blizzard when I shoveled snow).
A few day ago, I had my first lab test. These tests will be repeated every two weeks during the cycle of treatments to make sure that the PRRT is not lowering my white blood cell count too much. I was told that the count will be lower and will not bounce back, so we must make sure that it is not going too low.
Three more treatments to go! They say that each treatment can produce different symptoms with different severity for any patient. Also, we cannot know how effective the treatments have been until I have a scan after the last treatment late this year.
My next treatment may be in about six weeks. We may have to schedule it later because of travel plans.
Laurie and I are going to the Yucatan Peninsula in late April and hoping that my radioactivity does not screw up the travel. We also want to visit our son and his family in Scotland in the late spring/early summer again worried about my radioactivity. We will see.
NOTE: Others who have had PRRT have told me that the procedures in the clinic they used were different. For instance, instead of a PICC line, the clinic used a standard IV. Do not expect everything to be similar.
Friday, March 1st was my first PRRT (Peptide Receptor Radionuclide Therapy). Today, Saturday, March 2nd, I slept well, did not wake up with Spiderman or Incredible Hulk powers and I am not feeling sick from the treatment. Perhaps a little fatigue and a tiny bit of upset stomach. I also have a cold so the symptoms could be related to that.
It went well. On Thursday I went to Presbyterian/St. Luke’s Hospital and had the PICC Line inserted. The wonderful Radiology team there were friendly, helpful and informative. The only discomfort was the initial little prick in my arm to insert the PICC Line. The actual process took only about 6 minutes. The line was inserted into a vein in my inner, upper arm and run to within about 4 cm (1.5 inches) from the top of my heart. No complications except my pacemaker was on my right side which they had expected to use so they used the left side. We don’t want to disturb those wires, right?
At 7:30 AM on Friday, I arrived at the Rocky Mountain Cancer Center (Dr. Liu’s offices), had my vitals checked and went to the infusion room to start the process. For those of who do not know (lucky you), an infusion room is a room with a lot of recliner chairs for patients and other chars for family. The patients there get chemo and other treatments. They had a few chairs set aside for PRRT patients. I and a man named Billy from Texas were there for the PRRT. Billy is about my size and age and he is apparently much sicker from the disease than I.
All of the nurses, nuclear medicine staff, in fact everyone at RMCC were friendly and helpful throughout. They went to great trouble to explain every step. What a great group!
Once I was in the infusion chair, my nurse checked and flushed the PICC line. She then injected a short acting anti-nausea and an antacid through the IV.
Once the anti-nausea medication was finished, The amino acids were started and increased incrementally as tolerated. The IV anti-nausea meds would be continued throughout the treatment and would be the last thing removed at the end of the day. I only had a tiny spot of nausea at one point. Billy the Texan, experienced a lot of nausea during the treatment. He told me that his NETs symptoms included a lot of nausea so it was a terrible experience for him.
After the anti-nausea IV was going well, we were moved to the another floor, the Radiology/Nuclear Medicine dept. where the LUTATHERA would be added to the IV.
The LUTATHERA is started 30-45 minutes after the amino acids are started. The infusion lasts about 40 minutes. My Nuclear Medicine tech checked the level of radio activity at my heart and at an area that has several tumors. Fortunately, for me, there were no problems. Billy, I think was quite nauseous and sick.
Once the Lutathera had been administered, we were moved back up stairs to the infusion room. We each got a small private room with a bed to rest on. There was one of those radiation signs (see the image at the top of this blog) and my name on the door.
There was a bathroom exclusively for PRRT patient use. There were two signs on the door which said “DANGER, do not enter“. Seemed a bit daunting, however we were required to void our bladders at least twice in the next two hours to make sure the kidneys were working. The bathroom had paper taped to the floor. The toilet bowl was completely covered in plastic cling type wrap. After voiding, we were instructed to cover the toilet seat with a special pad and flush three times. This is an attempt to keep all body fluids confined to the toilet.
Once in the room, I was asked if I wanted anything to eat. Most of the available food was snacks which were OK. I got to eat Ramen noodles, Cheese Crackers, coffee and water. Obviously, I was not nauseous. It went down fine.
Once the amino acid infusion was finished (between two and three hours after the actual LUTATHERA), my nurse removed the PICC line. This was almost instantaneous and painless. She just said look the other way until I say you can turn back. I looked away and she said OK and there she was holding the thing. After that, just bandaging the entry point and I drove myself home!
Now this experience must be repeated three more times eight weeks apart.
I am scheduled to have the first of four PRRT treatments on Friday, March 1st. Today, February 26, I had a meeting to learn about it and the rules for me and to have the blood tests which will be the benchmark for the blood tests that I will have every two weeks for the next none months.
First, I have done a little explanation of PRRT in this previous post. Here is another attempt at clarification:
PRRT – Peptide Receptor Radionuclide Therapy
P – Peptide: In the case of this treatment the peptide is a somatostatin analog similar to octreotide. Somatostatin is an endocrine hormone made by our own bodies. Octreotide is a commercially made chemical very similar to somatostatin that many people with NETs (like me) have injected into their rear ends every month or more
peptide /pep·tide/ (pep´tīd) (pep´tid) any of a class of compounds of low molecular weight that yield two or more amino acids on hydrolysis; known as di-, tri-, tetra-, (etc.) peptides, depending on the number of amino acids in the molecule. Peptides form the constituent parts of proteins.
R – Receptor: Neuroendocrine tumors have (or express) receptors on their surface that attempt to bind with somatostatin as it passes by in the blood stream. Unfortunately, only 80% of the receptors are active, so any particular patient may not be a good candidate for PRRT if their receptors are not active. Also, even if most of a patients tumors have active receptors, they may not all be active. PRRT is said to be 75% likely to have positive effect.
R – Radionuclide: A chemical substance, called an isotope, that exhibits radioactivity. In the GA-68 scans which I have written about, Gallium-68 is the isotope. It is not radioactive enough to worry much about damage to the patient. In PRRT the radionuclide is Lutetium-177. This is strong enough to damage the tumor cells but not to damage the patient, if controlled. The brand name of the Lutetium-177 and octreotide combination is LUTATHERA distributed by: Advanced Accelerator Applications USA, Inc., NY 07041
T – Therapy: This therapy directly targets the molecules of the tumors. Because it works over the whole body, can be ideal for someone like me who has tumors in the liver, the pancreas, behind my eyes in the skull, in three vertebrae and in my abdominal wall. This will probably not eradicate the disease but the goal is to shrink the tumors and be stable (progression free) for three to four years (average). If or when progression occurs it can be repeated.
There are many places to look for more detail. Try these:
It was more than information. NOTE: Bear in mind that everything below will be particular to Rocky Mountain Cancer Center (RMCC), Dr. Liu’s offices. Not all clinics will have identical procedures.
The PRRT will be done four times, once every eight weeks. Today’s blood lab tests will form a benchmark to compare with lab tests that will be done every two weeks for nine months! This is to closely monitor my blood cell count to make sure that the radiation is not making it too low.
On Thursday, the day before PRRT, I will go to RMCC and they will insert a PICC Line. This is a long flexible IV tube running through my vein to a near the intake valve of my heart. I have been told that most clinics do not use a PICC line, they use standard IVs instead. The PICC Line will be removed after the treatment is given on Friday.
On Friday, the day of treatment, the whole process should take 5 or 6 hours.
1 hour before the LUTATHERA, I will be given a short acting anti-nausea medication and an antacid through the PICC. then a longterm anti-nausea through the IV. These are because the next step is known to cause nausea in many patients. I am told it is better now than it used to be!
At this an infusion of amino acids will begin. The purpose of these amino acids is to protect the kidneys from radiation. I am told that our kidneys are among the most sensitive organs to radiation yet in this therapy, they must clean it all out of the bloodstream ultimately.
The LUTATHERA infusion will start 30 to 45 minutes after the amino acids have started and will last about 40 minutes. Then there will be a saline flush.
The rest of the amino acid infusion will be finished and the PICC removed.
After the above process people must stay a designated distance from the patient. You are radioactive.
As long as all has gone well, the patient is released and can drive themselves home, if they wish.
Avoid close contact with people. Try to keep a distance of 3 feet for 3 days. During that time avoid public places.
Limit contact (3 feet) with children for 14 days.
For the first two or three days after treatment bedding, pajamas, clothing must be washed separately from other people’s laundry. They should be washed two or three times.
For any air travel, you must keep a discharge letter with you for at least 3 months after treatment.
Possible Side Effects (None are very common)
Interestingly, many of the listed side effects are the same as the side effects of Sandostatin (octreotide).
I asked if there was anything that could occur long term. PRRT has been blamed for leukemia in a few cases. Only one case was seen at RMCC a year after PRRT was given at a different clinic. There was no way to determine whether that patient would have developed leukemia anyway.
I will attempt to blog my personal experience with the therapy this weekend.
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.
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.