Tag Archives: NETs

Y-90 Radioembolization (SIR-Spheres) results so far

August 20, 2020Carcinoid Cancer, Health, Neuroendocrine Cancer, TherapyLiver, NETs, neuroendocrine tumor, Radioembolizationcy

One month ago, I received a treatment for my neuroendocrine tumor called Y-90 radioembolization.

Commercial product is called SIR-Spheres.

In radioembolization, tiny glass or resin beads called microspheres are placed inside the blood vessels that feed a tumor in order to block the supply of blood to the cancer cells. Once these microspheres, which are filled with the radioactive isotope yttrium Y-90, become lodged at the tumor site, they deliver a high dose of radiation to the tumor and not to normal tissues. From RadiologyInfo.org for Patients/

This treatment was for a larger, more active tumor in my liver.

The procedure itself was quick (an hour) and painless. It was supposed to be day surgery so that I could go home that day. Instead, I had nausea so bad that I could not use oral pain meds (opoids! Don’t dis me), for two days the pain meds were given IV. Then I got to go home

Wait… Didn’t I have PRRT radioisotope treatment last year for this cancer?

Yes, I did (see Yesterday’s PRRT and follow the thread). Four treatments spaced over 8 months. The last was in August last year. Dr. Liu tells me that the PRRT acts like thousands of BBs throughout the body and does best against small tumors. This larger tumor actually grew during the treatments. He said the Y-90 treatment is like a bowling ball dropped on a very specific tumor in a specific site (in other words, a lot more radiation to a lot more specific place).

Side effects of Y-90.

You will be radioactive for about 3 days. Stay away from other people. (What’s the big deal? We already do that this year.)
These vary with patient but for me, there has been severe liver pain which took about three weeks to go away. There has also been a lot of nausea, stomach pain and gas and bloating which after four weeks has reduced some but not nearly enough for my normal functioning even with medication. If it continues, for more than another couple weeks, I will need to be checked for stomach ulcer which would happen if a few of the radioactive spheres escape the liver and travel through the blood system to the stomach. I am told it doesn’t happen often but does happen. If it is damaged by the radioactivity, I may have to take drugs for my stomach for a long time.
A side effect specific to me was excessive worry because of the fact that I had chemoembolization (similar to above except with chemo instead of radioactivity) in 2011 and it caused a “carcinoid crisis(in my case it was blood pressure and heart rate both going very low and refusing to respond to treatment)” so bad that I very nearly died.

Results

Today, August 20, 2020, I saw Dr. Liu to discuss the results of an MRI and YIPPIE! The tumor is shrunk and may be completely dead! We will test again in three months. As stated above, if my stomach is not better, we will test that also. In the past, Dr. Liu has discussed the possibility of having me do chemo after the Y-90. It would probably be an oral treatment (captem – The combination of capecitabine and temozolomide) and might extend for years. He did not mention it in this meeting and I am happy to let that sleeping dog lie.

May we all have the best possible outcomes,
Cy

2 Weeks After 1st PRRT

March 16, 2019Carcinoid Cancer, Health, NETS TheranosticsNETs, neuroendocrine tumor, PRRTcy

“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

2018 NET Cancer Awareness Nov. 10

November 9, 2018Carcinoid Cancer, HealthNETs, neuroendocrinecy

Net Cancer Day — Worldwide NET Cancer Awareness Day

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.

May we all have the best possible outcomes,

Another Netspot (GA68) Scan, Next PRRT

August 30, 2018Carcinoid Cancer, Health, NETS TheranosticsGA-68, NETs, Netspot, neuroendocrine tumor, Peptide Receptor Radionuclide Therapy, PRRTcy

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.