For three to four years I had invasive bladder cancer procedures and a BCG (immune system treatment) to try to rid me of bladder cancer.
Today, I had another cystoscopy check for bladder cancer. There was none there! WOO! HOO!
It has been about three years since my last treatment. I can now go on a schedule of one checkup every year, instead of twice a year. As you might guess, it is a great relief to be able to worry about only one cancer instead of two.
“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.
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.
Today, I had a checkup with my urinary surgeon. Another cystoscopy — UGH. I had been really nervous before this examination. The surgeon had told me that if it came back, he might have to remove my bladder.
However, by the end, it was a pleasure. The bladder cancer has not returned in two years since it was last removed!!! Prior to the last surgery, it had occurred four times, about every six to eight months.
With every month it does not recur, the odds are lower that it will recur.
My sincerest thanks to all who think, pray and otherwise wish me well in this journey.
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!