We (Colorado NETs Support Group) had our quarterly meeting yesterday. There were twelve attendees. Two of the attendees were new to our meetings.
We had no speaker, so we all spoke. It was a sharing meeting. Each person shared their history and experiences with the disease as much as they cared to share. There was an amazing amount of information about the disease, the treatments, the patient’s experience.
The value of such meetings is immense! Each of us could comment on how hard it is to experience a disease when no one believes you nor can medical people properly diagnose it for years. Even after a proper diagnosis, it can be years before you meet someone with the disease and a shared experience. Because the tumors often secrete hormones that cause us to look well externally, it can be difficult to convince others that we feel terrible internally.
A sharing meeting allows us to understand that all of us go through these problems…
And we survive! One of our members yesterday was diagnosed 40 years ago! The sharing allows us to talk to people with shared problems and I find it to be cathartic.
At the end of the meeting, we had veggie snacks, brownies, pumpkin pie and drinks. Many thanks to those who provided these refreshments. Also, thanks to Presbyterian/St. Luke’s Hospital for providing a conference room for the meeting. That is quite important because we are not an official non-profit and we do not collect dues.
Again. thanks to all and
May we all have the best possible outcomes.
Many people find it easier to watch video presentation than to read all of the technical things on the internet about neuroendocrine tumor and try to winnow out the fluff and nonsense.
We have added a video page always available from the main menu above, with youtube video playlists from a number of trusted sources. Our intent is to keep this up to date, so that the information is now and not stale.
We have added a new page to this blog which lists a large number of information sources for NETs! See the menu above. It now has NETs Information Sources as a link.
One of the worst problems with our disease is the difficulty of finding accurate, appropriate, reliable information about the disease and our own manifestations of the disease. Dr. Google can be very misleading sometimes. Our specialists want to help but usually can only answer the questions we ask and we don’t know what questions to ask.
The best approach we have found is that each patient must be their own best advocate (or have a loved one who can do it.) To be a good advocate one must be as well informed as possible.
Please help us. If you find inaccurate information, let us know. If you find a new trusted source, let us know.
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.
Our guest speaker: Pamela Gaytan BSN RN, Clinical Nurse Manager Lexicon Pharmaceuticals. She was Dr. Eric Liu’s former nurse. She has worked with NET patients. NET doctors all over the country. Her knowledge, experience, empathy and compassion for the NET community will make this meeting invaluable to NET patients, caretakers, and anyone wanting to learn more about Neuroendocrine Cancer.
ALL ARE WELCOME…
For more information please contact: firstname.lastname@example.org
We are working toward supporting our neuroendocrine cancer (NETs) survivors and caretakers. We also are creating awareness, encouraging development of treatments and even cures!
Why the zebra stripes? In medical schools, students learning to diagnose are sometimes told “When you hear hoofbeats, think of horses, not zebras.” This encourages the new doctor to look for the obvious, common causes, not the exotic ones.
The problem is that neuroendocrine tumor (NETs) has been so unusual that the average time to diagnosis has been six years! Thus, we call ourselves zebras.
Let’s raise awareness! I’d rather not be a zebra anymore.