My Experience with GA-68 and PRRT

As many people know, I have maintained a blog about my experiences with NETs.  People (including Dr. Eric Liu) have suggested that some of those posts should also be on this site.

My posts about the Ga-68 scan and PRRT have been particularly poplular.  So, I have copied them to our blog here. You can click on the post titles to read them

Or you can read them by clicking on the Category “Cy’s Blog Posts” in the category list on the right or simply scroll down the main page.

I hope that you find them of some value,
Cy

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

Fourth and Last PRRT Done!

Joe Harris’s cupcakes for celebration
Bang the Gong after the 4th Treatment

Treatment

Yesterday I had the last of the Peptide Receptor Radionuclide Treatment! Wahoo!

For more information about this treatment see my blog here and here.

Side-Effects

Although I have only some fatigue today, I know that I will have a few other symptoms for a some weeks. Most people who have had the treatments tell me that the side-effects got less severe with each treatment (typically four treatment, eight weeks apart). This is my experience as well. There are some patients that have severe side-effects throughout the treatment cycle.

Typical side-effects that I typically experience are bad fatigue, abdominal pain (for me only in the mornings), nausea (only intermittent and light in my case) and joint and muscle pain (arthritis for me) is amplified quite a bit.. As today is only the day after and for me most side-effects are delayed a bit, I won’t know how the treatment effects me and for how long until a few days have passed. I know that some patients are not as lucky as I have been and have experienced dangerous and/or very uncomfortable reactions. A good friend had such a strong histamine reaction a few days after the treatment that she was admitted to the hospital.

Yesterday’s Treatment

Too early (7:00 am), the nurse welcomes me. At this clinic, a nurse is assigned to you and one other patient and shepherds us through the day. I love the nurses who do this. We are well cared for. This clinic does two patients in the morning and two in the afternoon.

The other patient, Paul, is already there. He is from Denver also and this is also his 4th treatment. This is a surprise because, in prior treatments, the other patients have been from out of state.

Our nurse hooks us up for the anti-nausea medication IV, somewhat later an IV of amino acids that are meant to protect our kidneys from the radiation is started. The amino acids will run for more than four hours, before the infusion, during the infusion and after the infusion until we are discharged to go home.

Two or three hours after arrival, we walk to the Nuclear Medicine department, pushing our IV poles before us. There the actual infusion of the radionuclide concoction of somatastatin (octreotide) analog coupled with the radionuclide lutesium-177, known as Lutathera, is hooked into the IV to drip into our arm for about 40 minutes.

After the infusion is done, we take the IV poles and walk back to the clinic where we each get a private room because we are radioactive now. For me, I went by wheelchair because I was quite light headed upon standing up from the infusion chair. That stayed with me for at least and hour and only gradually dissipated after that hour.

After that we wait for a couple hours while we snack and are basically under observation to make sure we aren’t having any strong adverse reaction.

Now the Celebration

I have had the good fortune to meet Joe Harris, Oncology Account Mgr, Advanced Accelerator Applications (company that makes Lutathera) at a couple of conventions. Two weeks ago when he found that I would be having the final Lutathera treatment, he promised to bring cake to the clinic. As you can see from the picture above, he brought cupcakes during the waiting period after the infusion. He brought enough for the patients, the clinic staff and the Nuclear Medicine staff. They were really good!

The clinic has a little tradition of “Banging the Gong” after the 4th treatment.

I have been very fortunate to be treated by such a wonderful group of people.

Known Results

My Dr. says that we cannot perform scans (to determine if the tumors have shrunken or disappeared due to the treatment) for months. This is because the tumors usually swell for a while after they are attacked by the radiation. So…. there will be a CT scan in about three months and the GA-68 PET/CT scan at about six months (the definitive scan).

But, here’s a known result. I have had night sweats and evening chills daily for 10 years. Some oncology nurses call this tumor fever, they can be a misery. They have not happened at all for the past three or four months. Something good has happened!

May we all have the best possible outcome,
Cy

Some Points from Yesterday’s Conference

There was an immense amount of information given to us patients and caregivers yesterday. Well delivered and useful information. One cannot begin to list everything we heard. For that, you should watch the conference stream that is available on YouTube here:
This will be available for a long time, I think. There will be individual videos of the sessions as soon as they can be properly edited.

NETRF has initiated a podcast. If you like/listen to podcasts, it is available here: netrf/podcast and will soon be available at all of the normal podcast sources.

Bearing in mind that I have been to a number of conferences and seen many videos, much was not really new for me. Some things on my mind from the conference:

Genetics

Most of us know that there is a familial connection for some NET patients. And, it seems there must be some genetic connection between tumors in a patient and tumors in another patient.  Dr. Fishbein’s presentation clarified those thoughts for me, educated me more on genetics and especially brought home these points about whether to be tested for inherited genetic causes of NETs.

  • PNETs (up to 15% inherited)
    only test if multiple primary tumors in the patient or if another feature of a syndrome is present.
  • Lung NETs and Small-Intestine-NETs (rarely inherited)
    Only if another feature of a syndrome is present
  • Pheo/Para (35-40% inherited)
    Testing recommended for everyone with these NETs
  • Medulary Thyroid Cancer (25% or more inherited)
    Testing recommended for everyone with these NETs

Medical ID

Josh Mailman brought up the desirability of having a medical ID. He said the he wore his all the time.  We have discussed this in our support group in the past but it bears repeating. Having readily available Medical Information may be very important in the case of an accident or crisis.

  • Josh uses ROAD iD. It looks good to me.
    There are many other companies offering Medical ID
    MedicAlertFoundation
    American Medical ID
    Creative Medical I.D.
    of course, Amazon.com
    and many others.
  • For myself, I do not wear an ID bracelet, but, I do have an “In Case of Emergency” app on my smart phone which is with me most of the time. On my Android phone, I use Medical ID(Free): In Case of Emergency.
    It can be set to show whether you are an organ donor, height, weight, medical conditions, allergies and reactions (“Epinephine only in Emergencies”), current medications and notes (here I list emergency contacts family, PCP, Oncologist, Health Insurance Plan and number, and pacemaker model.) This can be set to appear on your home screen even if it is locked, so that emergency people can access the info.
    There are many of these apps available for both Android and iPhone.Always download only from Google or Apple stores.

Communication

Josh also led a great discussion on communication between patients and doctors.  A very important point to me was how important the caregiver can be in the discussions.

 

It was a wonderful conference and I may add to these points later.  If you went to the conference, don’t hesitate to add your take-aways in the comments below.

The NETRF Patient and Caregiver Conference in Denver was great

Elyse, Gellerman, Anne Ferrell, Lela Selby, Cy Ball

Thanks so much to Elyse Gellerman and Laran Hyder of the Neuroendocrine Tumor Research Foundation for providing such an informative and useful conference.

Thanks to the speakers for their wonderful presentations:

  • Lauren Fishbein MD PhD, Endrocrinology
    University of Colorado
  • John Gerhold MD, Diagnostic Radiology
    Diversified Radiology
  • Mark Lewis MD, Medical Oncology
    Intermountain Healthcare
  • Eric Liu MD, Surgical Oncology
    Rocky Mountain Cancer Centers
  • Josh Mailman MBA, Cancer Patient Advocacy
    NorCal CarciNET
  • Charles Nutting DO FSIR, Interventional Radiology
    Minimally Invasive Procedure Specialists
  • Heloisa Soares MD PhD, Oncology
    University of New Mexico

The conference videos will be available on the NETRF YouTube channel after they have been edited.

We had strong attendance and people stayed for the whole 8 hours!