Category Archives: Neuroendocrine Cancer

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

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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

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NETRF Conference Announced for Denver

Very exciting news!

The NET Research Foundation is pleased to invite you to join the 2019 Denver NET Patient and Caregiver Education Conference on Saturday, August 10, 2019, at the Sheraton Denver Tech Center. This full-day conference will include experts from the Rocky Mountain region. Our agenda includes speakers like Dr. Eric Liu, Dr. Lauren Fishbein, Dr. Heloisa Soares, and Dr. Mark Lewis.

The conference is free!

Breakfast, lunch, and snacks will be provided at the conference, seating is limited. A block of hotel rooms at a discounted price is available for out-of-town attendees. Register online at: https://netrf.org/events/patient-and-caregiver-conferences/2019-denver-neuroendocrine-tumor-conference/

This information is also posted on the Colorado NETS Support Group blog.

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

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Learning Lessons

Maybe I’m getting a little slow with old age. It is taking me a while to learn this:

I will get illnesses that are not NETs or PNETs! even if it looks like NETs symptoms.

Friday night and Saturday morning, I vomited blood and went to the hospital. Sunday, my bowel movements were bloody as well.

These are symptoms that I had before because of NETS. The doctors immediate response was they did not think so but they would keep Dr. Liu my oncologist in contact.

The emergency room had me on an NG tube (avoid that if at all possible) to check the amount of blood in my stomach. Once I was admitted, the doctors had it removed. The gastro-intestinal doctors did an endoscopy (camera down the throat to stomach) to see what could be seen. They found a tear in my esophagus near my stomach.

The problem is being blamed on a “perfect storm” of drugs to quote the GI doctor.

  1. low dose aspirin to prevent heart problems
  2. Eliquis blood thinner because I have AFIB
  3. A strong NSAID prescribed for my arthritis (which I took for 90 days and quit just a week before the incidents above. It wasn’t very effective.)

I am off all of them for now. May go back on Eliquis (ridiculously, greedily expensive and annoying and dangerous of course) in two weeks. The others not.

Interesting to me, the GI doc said that recent studies showed that aspirin therapy may not be that good anyway. He suggested Tylenol for arthritis which I already know is not that great. When I suggested CBD oil, he “Try it.” As far as I can tell, anything for arthritis pain is either not effective, incredibly expensive, and/or has terrible side effects.

I left the hospital with a prescription for omeprazole to heal the bleeding tear. Once again, this is confusing because 12 years ago I had had a burning stomach for years and developed a bleeding ulcer and was told that I took too much NSAIDS and put on omeprazole for two years. Later that was proven to be totally wrong. Stomach burning and bleeding was from the neuroendocrine cancer (I had it but was not diagnosed yet.) and omeprazole has a questionable relationship with NETs in animals not proven yet with humans.

The good thing is that Dr. Liu told me that short term omeprazole is ok where necessary.

Enough adventures! I hope that this really is not a NETS symptom or, if it is, that is will be resolved by the Peptide Receptor Radioisotope Therapy (PRRT) that I start in February.

May we all have the best possible outcomes,

Cy

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