Tag Archives: neuroendocrine tumor

NETRF Conference Announced for Denver

Very exciting news!

The NET Research Foundation is pleased to invite you to join the 2019 Denver NET Patient and Caregiver Education Conference on Saturday, August 10, 2019, at the Sheraton Denver Tech Center. This full-day conference will include experts from the Rocky Mountain region. Our agenda includes speakers like Dr. Eric Liu, Dr. Lauren Fishbein, Dr. Heloisa Soares, and Dr. Mark Lewis.

The conference is free!

Breakfast, lunch, and snacks will be provided at the conference, seating is limited. A block of hotel rooms at a discounted price is available for out-of-town attendees. Register online at: https://netrf.org/events/patient-and-caregiver-conferences/2019-denver-neuroendocrine-tumor-conference/

This information is also posted on the Colorado NETS Support Group blog.

2 Weeks After 1st PRRT

“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.

Namaste,
Cy

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Yesterday’s PRRT

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.

Over about 30 minutes a long-term anti-nausea medication is given through the IV. As you may recall from my last blog https://cyrilfb.com/carcinoid-cancer/prrt-meeting-today/, The next step can cause a lot of nausea in many patients.

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.

Receiving LUTATHERA

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.

LUTATHERA, glass vial in a lead container.

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.

May we all have the best possible outcomes,
Cy

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Learning Lessons

Maybe I’m getting a little slow with old age. It is taking me a while to learn this:

I will get illnesses that are not NETs or PNETs! even if it looks like NETs symptoms.

Friday night and Saturday morning, I vomited blood and went to the hospital. Sunday, my bowel movements were bloody as well.

These are symptoms that I had before because of NETS. The doctors immediate response was they did not think so but they would keep Dr. Liu my oncologist in contact.

The emergency room had me on an NG tube (avoid that if at all possible) to check the amount of blood in my stomach. Once I was admitted, the doctors had it removed. The gastro-intestinal doctors did an endoscopy (camera down the throat to stomach) to see what could be seen. They found a tear in my esophagus near my stomach.

The problem is being blamed on a “perfect storm” of drugs to quote the GI doctor.

  1. low dose aspirin to prevent heart problems
  2. Eliquis blood thinner because I have AFIB
  3. A strong NSAID prescribed for my arthritis (which I took for 90 days and quit just a week before the incidents above. It wasn’t very effective.)

I am off all of them for now. May go back on Eliquis (ridiculously, greedily expensive and annoying and dangerous of course) in two weeks. The others not.

Interesting to me, the GI doc said that recent studies showed that aspirin therapy may not be that good anyway. He suggested Tylenol for arthritis which I already know is not that great. When I suggested CBD oil, he “Try it.” As far as I can tell, anything for arthritis pain is either not effective, incredibly expensive, and/or has terrible side effects.

I left the hospital with a prescription for omeprazole to heal the bleeding tear. Once again, this is confusing because 12 years ago I had had a burning stomach for years and developed a bleeding ulcer and was told that I took too much NSAIDS and put on omeprazole for two years. Later that was proven to be totally wrong. Stomach burning and bleeding was from the neuroendocrine cancer (I had it but was not diagnosed yet.) and omeprazole has a questionable relationship with NETs in animals not proven yet with humans.

The good thing is that Dr. Liu told me that short term omeprazole is ok where necessary.

Enough adventures! I hope that this really is not a NETS symptom or, if it is, that is will be resolved by the Peptide Receptor Radioisotope Therapy (PRRT) that I start in February.

May we all have the best possible outcomes,

Cy

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Good Vacation and Missed Opportunity

Vacation in Scotland

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.  

Namaste,

Cy

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Another Netspot (GA68) Scan, Next PRRT

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.

May we all have the best possible outcomes,

Cy

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