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!

After the 3rd PRRT

I had the third Peptide Receptor Radioisotope Therapy (PRRT) on Friday three days ago.

So far, there is not a lot to report. The side effects seems to be less severe and less frequent than they were for the earlier treatments.

In fact, each treatment seems to “get better”. I told this to one of the nurses in the clinic today when I went in for my monthly Sandostatin injection. She said “You must be getting used to it.” I said, “I’m not sure that it’s good to get used to being highly radioactive!”

The symptoms that I have had so far since the third treatment:

  • Fatigue – very definitely need a long nap in the afternoon and not much will to do anything physical.
  • Lower abdominal pain – each morning for a half hour or so there is sharp pain in my lower abdomen.
  • Nausea – a little nausea every morning and yesterday morning, I worked on cleaning a gutter in the morning and the nausea took over much more intense for 4 to 5 hours. I better wait a week to do any more of that.
  • Joint/muscle pain – I awoke this morning with rather difficult pain in many of my joints joints, mostly those with noticeable arthritis or old injuries. It reduced very much in severity after 30 to 60 minutes. It is still there five hours though.

All the above happened after the other treatments, but this has been less severe so far.

Let’s hope that it all goes away quickly!

May we all have the best possible outcomes,
Cy

We Added a Videos Page

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 will certainly post the videos from the NETRF 2019 Patient and Caregiver Conference on August 10, 2019   as soon as they are available.

May we all have the best possible outcomes.

Donate Tumor Tissue for Research

This from our friend and member Annie Farrell:

A subject to let our fellow NET travelers know about.  I haven’t had tissue taken in a long time.  Don’t think the biopsy two years ago of the golf ball sized tumor near my thyroid counts since they probably just biopsied it, saw it was NET and threw away the remains.

 

Donate Tumor Tissue to Help Research

Consenting to donate excess tumor tissue, from a biopsy or surgical procedure, helps advance our knowledge of NETs by providing researchers with an essential resource. See our FAQs about tumor tissue donation. (MORE)

 

Patients can donate tumor tissue through Pattern.org.  Pattern.org links to an electronic consent form where patients can learn more about contributing. Should a patient decide to provide consent, Pattern.org arranges for excess tumor tissue to be shipped from a patient’s institution to the NETRF cell line research laboratory.

Make sure to talk to your doctor several weeks in advance of your procedure about your plan to donate excess tumor tissue.

If you donate a portion of your tumor tissue to the NETRF Cell Line Project, you can also choose to donate tissue to the institution where you undergo your procedure.

Thanks Annie for valuable information in the fight against NETS!

Information Sources

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.

May we all have the best possible outcomes…

2nd PRRT Yesterday, Some Complication.

The second PRRT treatment went much the same as the first (see https://cyrilfb.com/carcinoid-cancer/yesterdays-prrt/ ).

Except for one thing. My blood pressure spiked very high during the actual infusion of the Lutathera. One nurse said that she had never seen blood pressure that high. Now, 24 hours later, it has reduced to much less high but still not in the normal range.

The clinic doctor and nurses had me make an appointment with my cardiologist for within the next week. It should be interesting since I am already taking the maximum of my current bp medication.

May we all have the best possible outcomes.
Cy

2 Weeks After 1st PRRT

“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