Category Archives: Health

Very Messy Old/New Year

Carcinoid Cancer, Export, Health, Neuroendocrine Cancer, Therapy

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

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

Carcinoid Cancer, Health, Neuroendocrine Cancer, Therapy, , ,

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

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Fourth and Last PRRT Done!

Carcinoid Cancer, Health, NETS Theranostics, Neuroendocrine Cancer, ,
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.

Bang the Gong youtube
Watch this video on YouTube.

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

Carcinoid Cancer, Health, NETS Theranostics, Neuroendocrine Cancer

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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2nd PRRT Yesterday, Some Complication.

Carcinoid Cancer, Health, NETS Theranostics, Neuroendocrine Cancer

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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Three Years Since Bladder Cancer!

Health

For three to four years I had invasive bladder cancer procedures and a BCG (immune system treatment) to try to rid me of bladder cancer.

Today, I had another cystoscopy check for bladder cancer. There was none there! WOO! HOO!

It has been about three years since my last treatment. I can now go on a schedule of one checkup every year, instead of twice a year. As you might guess, it is a great relief to be able to worry about only one cancer instead of two.

May we all have the best possible outcomes,
Cy

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2 Weeks After 1st PRRT

Carcinoid Cancer, Health, NETS Theranostics, ,

“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

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Yesterday’s PRRT

Carcinoid Cancer, Health, NETS Theranostics, , ,

NOTE: Others who have had PRRT have told me that the procedures in the clinic they used were different. For instance, instead of a PICC line, the clinic used a standard IV. Do not expect everything to be similar.

Friday, March 1st was my first PRRT (Peptide Receptor Radionuclide Therapy). Today, Saturday, March 2nd, I slept well, did not wake up with Spiderman or Incredible Hulk powers and I am not feeling sick from the treatment. Perhaps a little fatigue and a tiny bit of upset stomach. I also have a cold so the symptoms could be related to that.

It went well. On Thursday I went to Presbyterian/St. Luke’s Hospital and had the PICC Line inserted. The wonderful Radiology team there were friendly, helpful and informative. The only discomfort was the initial little prick in my arm to insert the PICC Line. The actual process took only about 6 minutes. The line was inserted into a vein in my inner, upper arm and run to within about 4 cm (1.5 inches) from the top of my heart. No complications except my pacemaker was on my right side which they had expected to use so they used the left side. We don’t want to disturb those wires, right?

At 7:30 AM on Friday, I arrived at the Rocky Mountain Cancer Center (Dr. Liu’s offices), had my vitals checked and went to the infusion room to start the process. For those of who do not know (lucky you), an infusion room is a room with a lot of recliner chairs for patients and other chars for family. The patients there get chemo and other treatments. They had a few chairs set aside for PRRT patients. I and a man named Billy from Texas were there for the PRRT. Billy is about my size and age and he is apparently much sicker from the disease than I.

All of the nurses, nuclear medicine staff, in fact everyone at RMCC were friendly and helpful throughout. They went to great trouble to explain every step. What a great group!

Once I was in the infusion chair, my nurse checked and flushed the PICC line. She then injected a short acting anti-nausea and an antacid through the IV.

Over about 30 minutes a long-term anti-nausea medication is given through the IV. As you may recall from my last blog https://cyrilfb.com/carcinoid-cancer/prrt-meeting-today/, The next step can cause a lot of nausea in many patients.

Once the anti-nausea medication was finished, The amino acids were started and increased incrementally as tolerated. The IV anti-nausea meds would be continued throughout the treatment and would be the last thing removed at the end of the day. I only had a tiny spot of nausea at one point. Billy the Texan, experienced a lot of nausea during the treatment. He told me that his NETs symptoms included a lot of nausea so it was a terrible experience for him.

Receiving LUTATHERA

After the anti-nausea IV was going well, we were moved to the another floor, the Radiology/Nuclear Medicine dept. where the LUTATHERA would be added to the IV.

The LUTATHERA is started 30-45 minutes after the amino acids are started. The infusion lasts about 40 minutes. My Nuclear Medicine tech checked the level of radio activity at my heart and at an area that has several tumors. Fortunately, for me, there were no problems. Billy, I think was quite nauseous and sick.

LUTATHERA, glass vial in a lead container.

Once the Lutathera had been administered, we were moved back up stairs to the infusion room. We each got a small private room with a bed to rest on. There was one of those radiation signs (see the image at the top of this blog) and my name on the door.

There was a bathroom exclusively for PRRT patient use. There were two signs on the door which said “DANGER, do not enter“. Seemed a bit daunting, however we were required to void our bladders at least twice in the next two hours to make sure the kidneys were working. The bathroom had paper taped to the floor. The toilet bowl was completely covered in plastic cling type wrap. After voiding, we were instructed to cover the toilet seat with a special pad and flush three times. This is an attempt to keep all body fluids confined to the toilet.

Once in the room, I was asked if I wanted anything to eat. Most of the available food was snacks which were OK. I got to eat Ramen noodles, Cheese Crackers, coffee and water. Obviously, I was not nauseous. It went down fine.

Once the amino acid infusion was finished (between two and three hours after the actual LUTATHERA), my nurse removed the PICC line. This was almost instantaneous and painless. She just said look the other way until I say you can turn back. I looked away and she said OK and there she was holding the thing. After that, just bandaging the entry point and I drove myself home!

Now this experience must be repeated three more times eight weeks apart.

May we all have the best possible outcomes,
Cy

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PRRT Meeting Today

Carcinoid Cancer, Health, NETS Theranostics

I am scheduled to have the first of four PRRT treatments on Friday, March 1st. Today, February 26, I had a meeting to learn about it and the rules for me and to have the blood tests which will be the benchmark for the blood tests that I will have every two weeks for the next none months.

First, I have done a little explanation of PRRT in this previous post. Here is another attempt at clarification:

PRRT – Peptide Receptor Radionuclide Therapy

  • P – Peptide: In the case of this treatment the peptide is a somatostatin analog similar to octreotide. Somatostatin is an endocrine hormone made by our own bodies. Octreotide is a commercially made chemical very similar to somatostatin that many people with NETs (like me) have injected into their rear ends every month or more

peptide /pep·tide/ (pep´tīd) (pep´tid) any of a class of compounds of low molecular weight that yield two or more amino acids on hydrolysis; known as di-, tri-, tetra-, (etc.) peptides, depending on the number of amino acids in the molecule. Peptides form the constituent parts of proteins.

https://medical-dictionary.thefreedictionary.com/peptide
  • R – Receptor: Neuroendocrine tumors have (or express) receptors on their surface that attempt to bind with somatostatin as it passes by in the blood stream. Unfortunately, only 80% of the receptors are active, so any particular patient may not be a good candidate for PRRT if their receptors are not active. Also, even if most of a patients tumors have active receptors, they may not all be active. PRRT is said to be 75% likely to have positive effect.
  • R – Radionuclide: A chemical substance, called an isotope, that exhibits radioactivity. In the GA-68 scans which I have written about, Gallium-68 is the isotope. It is not radioactive enough to worry much about damage to the patient. In PRRT the radionuclide is Lutetium-177. This is strong enough to damage the tumor cells but not to damage the patient, if controlled. The brand name of the Lutetium-177 and octreotide combination is LUTATHERA distributed by: Advanced Accelerator Applications USA, Inc., NY 07041
  • T – Therapy: This therapy directly targets the molecules of the tumors. Because it works over the whole body, can be ideal for someone like me who has tumors in the liver, the pancreas, behind my eyes in the skull, in three vertebrae and in my abdominal wall. This will probably not eradicate the disease but the goal is to shrink the tumors and be stable (progression free) for three to four years (average). If or when progression occurs it can be repeated.

There are many places to look for more detail. Try these:

My informational meeting today

It was more than information. NOTE: Bear in mind that everything below will be particular to Rocky Mountain Cancer Center (RMCC), Dr. Liu’s offices. Not all clinics will have identical procedures.

The PRRT will be done four times, once every eight weeks. Today’s blood lab tests will form a benchmark to compare with lab tests that will be done every two weeks for nine months! This is to closely monitor my blood cell count to make sure that the radiation is not making it too low.

On Thursday, the day before PRRT, I will go to RMCC and they will insert a PICC Line. This is a long flexible IV tube running through my vein to a near the intake valve of my heart. I have been told that most clinics do not use a PICC line, they use standard IVs instead. The PICC Line will be removed after the treatment is given on Friday.

On Friday, the day of treatment, the whole process should take 5 or 6 hours.

  • 1 hour before the LUTATHERA, I will be given a short acting anti-nausea medication and an antacid through the PICC. then a longterm anti-nausea through the IV. These are because the next step is known to cause nausea in many patients. I am told it is better now than it used to be!
  • At this an infusion of amino acids will begin. The purpose of these amino acids is to protect the kidneys from radiation. I am told that our kidneys are among the most sensitive organs to radiation yet in this therapy, they must clean it all out of the bloodstream ultimately.
  • The LUTATHERA infusion will start 30 to 45 minutes after the amino acids have started and will last about 40 minutes. Then there will be a saline flush.
  • The rest of the amino acid infusion will be finished and the PICC removed.
  • After the above process people must stay a designated distance from the patient. You are radioactive.
  • As long as all has gone well, the patient is released and can drive themselves home, if they wish.

After Care

  • Avoid close contact with people. Try to keep a distance of 3 feet for 3 days. During that time avoid public places.
  • Limit contact (3 feet) with children for 14 days.
  • For the first two or three days after treatment bedding, pajamas, clothing must be washed separately from other people’s laundry. They should be washed two or three times.
  • For any air travel, you must keep a discharge letter with you for at least 3 months after treatment.
  • Other precautions.

Possible Side Effects (None are very common)

  • Anxiety
  • Confusion
  • Hair loss
  • Irritability
  • Nausea
  • Weight loss
  • many more
  • Interestingly, many of the listed side effects are the same as the side effects of Sandostatin (octreotide).

I asked if there was anything that could occur long term. PRRT has been blamed for leukemia in a few cases. Only one case was seen at RMCC a year after PRRT was given at a different clinic. There was no way to determine whether that patient would have developed leukemia anyway.

I will attempt to blog my personal experience with the therapy this weekend.

Namaste,
Cy

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Net Cancer Day

2018 NET Cancer Awareness Nov. 10

Carcinoid Cancer, Health,
Net Cancer Day
Worldwide NET Cancer Awareness Day

Tomorrow (November 10) is International NET Cancer Awareness Day. 

This is important to all of us who have the disease.  NET Cancer has been one of the least recognized cancers with less research and diagnostic effort than most. Due to efforts like these awareness days, doctors and researchers are becoming more familiar and producing more tools to diagnose and treat our disease.

Most states governors have signed proclamations supporting this day.  Though the efforts of my co-leader of Colorado Carcinoid Cancer Support Group (CCCSG), our governor here in Colorado has signed this proclamation.

You can read more about NET Cancer Awareness Day here.

May we all have the best possible outcomes,

Cy

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