In Loving Memory of Cy Ball

While our Colorado NETS support group leader, Mr. Cy Ball, is no longer physically with us, his spirit is always with us and our Colorado NETS support group.

As you can see below, Cy’s last entry from this difficult year and a half was posted on February 24th, 2021.  He unfortunately got COVID.  He was in and out of the hospital.  In March of this year, he wrote me and told me he needed tricuspid valve surgery.  Carcinoid heart disease affects more than 50% of patients with carcinoid tumors.

Cy was very symptomatic with edema and fatigue.  Cy had many supportive and prayerful well-wishers.  Sadly, our support group leader passed away on April 21st, 2021.

He will be deeply missed.

Those we love don’t go away

They walk beside us everyday

Unseen, unheard, but always near,

Still loved still missed and very dear.

-Anonymous

I am keeping his postings on our website to bring his experience with NET cancer into our heart and keep them in our memory.

Many of you may not know, but Josh Mailman is an internationally recognized advocate for neuroendocrine tumor patients as well as an advocate for integrative oncology, nuclear medicine, and molecular imaging and the President of NorCal CarciNET Community.  He contacted me and thankfully offered to set up and teach me about a list serve to allow our group to communicate with each other.  He has added all of our email addresses to the system.  If you are not a part of the list, please reach out to me through the “Contact Us” page to be added.

An outside NET picnic/meeting is being planned for the end of the summer when more Coloradoans are COVID vaccinated.  More information to follow.

Until our first summer meeting, please refer to our NETS information sources page.  Many of those foundations and organizations are having live webinars with experts in the NET field and have NET educational video series available for no cost.

Please contact me with any questions or concerns.  Stay well everyone.

-Lela Selby

Very Messy Old/New Year

Who would have guessed?

This is a real story. We made mistakes. No apologies… we were trying to serve and protect our family. Doing the best we could with what we had. Our grandkids got COVID-19 around New Years. 4 year old did not get sick, 8 year old had symptoms for about 2 days. Daughter got symptoms. Laurie, my wife, had been babysitting, no symptoms. The dates here are approximate, I lost track.

They all tested positive. I got a test and tested negative.

In a few days, January 20, I woke in the middle of the night. Did not know where I was and got lost in my own bathroom. Managed to get to bed. Went to ER. Was admitted with a positive test with covid. Now my blood pressure would not stay up. I could not stand for more than a few seconds without collapsing to the floor.

After 4 days I was released and never had the usual covid symptoms, but my blood pressure would not stay up. A few days later back in the ER. Blood pressure so low I could not stand up. Terrible pNETS syndrome, fecal and urinary incontinence, mentally very confused. Adding more confusion, I also could not swallow properly (This was a symptom that I was already being treated for, unrelated to COVID or pNETs, we think, and still not resolved on Feb 19.)

carcinoid zebraWhat is going on? Has Plague 2020 morphed into Godzilla 2021? carcinoid zebra

So, the interesting thing about the COVID stuff above was that I never experienced the “normal” COVID symptoms except that my smell and taste were impacted severely.

Returned home on 27th still feeling weak, fatigued, I was reading the Sunday paper on the 29th and suddenly the Carcinoid bowel symptoms hit very hard, I was very confused, plus I could not stand up (literally collapsed). To the NETS experts, I did not change my diet except that I could not eat some things because of the COVID taste/smell thing. In fact, for several weeks, I ate very little. Everything tasted or smelled awful.

Off to the Emergency Room on January 31. Could not stand or walk reliably. Admitted to hospital that evening with very low blood pressure. I was confused and sometimes was not sure where I was or when it was. It was about then that we determined that I was taking three medicines that reduced my blood pressure. They were far too successful! For 1 or two years, my blood pressure had been quite high. The doctors had finally driven it low. We discontinued all but one of the weakest BP meds. This appears to work, allowing my blood pressure to rise to a more reasonable level.

We need to also factor in that the Sandostatin injections, specially when I miss an injection, and sometimes the NET disease itself can drive blood pressure up and down inexplicably. So some times we don’t know why the BP is what is.

For 2 days, I was in the regular hospital then , transferred for 10 days, I was in a rehabilitation hospital. Every day the physical therapist and the occupational therapist came to me and we did exercises while they watched carefully to see if I was steady on my feet, physically strong enough to do well on my own. ( By the way, since I am retired, my thought is that physical therapy and occupational therapy is pretty much the same thing.) Both therapists’ conclusion was that the problem was only the blood pressure, not core strength.

My blood pressure finally rose to “normal” range and I was no longer unsteady on my feet. So I was released and went home. For the last week and a half, I am trying to see my doctors and get to work on the physical problems. This morning my blood pressure was higher than anyone wants to see. I can see that this will be an ongoing story.

When there is more news, I will blog more.

Cy

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

Information from the Carcinoid Cancer Foundation and NANETS

News of videos, Facebook Live presentations about the COVID-19 disease and NETs patients and caregivers.

Click here for videos and events.

From the Carcinoid Cancer Foundation and from NANETS (North American Neuroendocrine Tumor Society.)

Run For Hope in Ft. Collins will be rescheduled

Sorry, the Run for Hope is being rescheduled. We will repost when we have a date.The Run for Hope is still going strong. Originally started by one of our group’s founders to support NETs it now provides funds to several cancer foundations.
It is a beautiful and fun event!

Fossil Creek Park
5821 S Lemay Ave.
Fort Collins, CO  80525

 

COVID-19 Information from NETRF

This message is from the Neuroendocrine Research Foundation.
The coronavirus disease (COVID-19) outbreak concerns everyone in the NET community. Issues range from reducing exposure to the disease to getting basic supplies. NETRF encourages patients and families to seek information and guidance from the U.S. Centers for Disease Control, the World Health Organization, as well as regional health authorities.
NETRF will offer NET-specific updates as information becomes available. We’ve compiled information on reducing the risk of COVID-19 as well as coping with social distancing and isolation.
Thanks to NETRF Board member and NORCAL CarciNET president Josh Mailman for recently posting a Q&A with Pamela Kunz, MD, NET specialist, and Janice Brown, MD, infectious disease specialist, Stanford Unversity, to address NET patients’ common concerns.
My thanks to the Neuroendocrine Research Foundation.
May we all have the best possible outcomes,
Cy