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

NOTE: This appeared first on my blog at cyrilfb.com. I have been encouraged by our members to show my posts about the NET journey here as well.

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.

  1. You will be radioactive for about 3 days. Stay away from other people. (What’s the big deal? We already do that this year.)
  2. 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.
  3. 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

Confused about NETs Imaging and Testing?

Before our diagnosis, most of us know absolutely nothing about NETs, much less the testing and imaging used to diagnose and follow the disease.

The Neuroendocrine Tumor Research Foundation recently produced a podcast about this subject.  The podcast is audio, but you can listen to the audio and download pdf files of infographics on this page: https://netrf.org/podcast/episode-2-imaging-testing-and-building-a-care-team/?platform=hootsuite&utm_campaign=HSCampaign

An informed patient is more likely to be their own best advocate.

November 24 – Meeting

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.

NET Cancer Day November 10

Net Cancer Day is November 10.  Lela requested a proclamation from the Colorado Governor’s office for Net Cancer day.

She got it!

This is the official proclamation.

Neuroendocrine (NET) Cancer Day-2019

Let’s hope that more awareness and recognition leads to more and better treatments and to a cure!

November 23, 2019 Meeting

We will be having our next meeting on Saturday, November 23, 1:00 pm to 4:00 pm at Jack Chang MD Conference Room, 2nd floor, Rocky Mountain Hospital for Children, Presbyterian/St. Luke’s Hospital.

We have not scheduled a speaker.  This will be a sharing meeting.  Lela will bring pumpkin pie!  Our apologies for the short notice.

RSVP please to Lela Selby. lelaselby@msn.com

Net Cancer Awareness Fundraiser for the Healing NET

The Healing NET Foundation has initiated this fundraiser:
Between Oct 1, Rare Cancer (Awareness) Day and Nov 10, NET Cancer (Awareness) Day, The Colorado NETs Support Group is asking for support for Healing NET Foundation in our mission to optimize care for the NET community.
 
This fundraiser originated from an idea Lela had based on a recent school band fundraiser that she saw. Her idea is: 20 reasons to support Healing NET with a $20 donation between now and November 10. 
 
The fundraiser link is: 20 Reasons
Please read that link and consider donating.
 
Thanks,
Cy & Lela