Category Archives: NET cancer experiences

Crisis and calm in the cardiac ICU

awareness, Death, Jane, NET Cancer Awareness Day/Month, NET cancer experiences

Before the first crisis

I was sitting just to the left of Jane’s hospital bed six years ago today. She’d arrived in the cardiac ICU just about midnight and they’d let me in to see her, briefly, about 1 a.m. I’d talked to her doctor about the surgery. He’d seemed pleased, despite the complications they’d encountered, with how things went. There’d been no sense of crisis.

…she kept paying it forward.

They’d warned me what I would see when I entered the room for the first time. Sometimes the pasty complexion and all the tubes and wires cause people to faint when they first encounter it. I spent half an hour there, just holding her hand and whispering sweet nothings. Then they sent me back to my hotel.

Jane wakes up

I slept a few hours but arrived at her bedside a little before eight the next morning. The nurse stood behind his panel of dials and meters, monitoring every vital sign, every drug going in and every fluid going out. I liked him. There was a calm about him I wanted to emulate. I saw that same calm in all her nurses over the next few weeks, even when things collapsed into chaos and crisis. That happened four times before death claimed her.

They’d warned me what I would see…

Now, I held her hand and talked to her. The nurse told me she was unlikely to wake up before noon, but her eyes flickered open within an hour of my arrival. They didn’t stay open long, maybe five minutes, and she dozed off again. But within an hour she was fully awake and alert.

We had a plan

She couldn’t talk with the tube going down her throat to aid her breathing. She couldn’t write with all the tubes and wires she was wrapped in. But we could hold hands and I could tell her what the surgeon had told me. It very much looked like she’d be in the step-down unit by Thursday night–as planned–and I’d be back home and out of the nurses’ and doctors’ way as she began to rehab her heart.

There was a calm about him…

It didn’t happen that way, but we had 30 hours that certainly looked like clear sailing into a difficult but workable future. Yes, her liver was a mess. Yes, her intestines were likely lined with tumors. But we had a plan–and the first part of that plan was going well. Tomorrow, we’d celebrate her birthday as best we could when she couldn’t eat, confident there would be more in the future when she could.

When right turns wrong

By the following day, everything was ready for the move upstairs except locating a bed for her on that ward. No problem: we started taking out the lines and doing the physical therapy as though the move had already happened. And Jane was a more than enthusiastic participant. She kept doing the simple exercises long after the PT people left. They’d told her she could–that it would speed up the process. And Jane wanted to be home by Christmas.

…we had a plan…

And then it all went sideways. At the shift change the new nurse ran the checks every new nurse makes when taking over a patient’s care. They’d taken off the pulse-oxygen monitor in preparing to move Jane to the step-down unit. The exam showed Jane’s blood oxygen levels crashing. They put her back on oxygen but the levels stayed lower than was good. They ran tests, did scans–but could not figure out what was going on.

Carcinoid crisis

I spent that night sitting with her in her room in the ICU. I didn’t sleep–and neither did she. She was in the midst of her first carcinoid crisis, though we didn’t realize it at the time. It was minor, compared to the ones that came later. Those would put her in a coma–and the last one would kill her.

…Jane wanted to be home by Christmas.

Jane never got to the step-down unit. I didn’t sleep at home again until December 10, several hours after her death. I curled up in a fetal ball in my corner of the bed and cried myself to sleep. Then I put on a brave face and went to work planning her funeral.

What we learned

We learned a lot from Jane’s struggles over those four weeks. Doctors rewrote the protocols for heart surgery aftercare on patients with carcinoid syndrome from what Jane went through. People are alive today who might not be because of that. I’m glad about that–a small brightness in an otherwise dark firmament.

Jane never got to the step-down unit.

Jane wanted good things to come from her fight with NET cancer. She wanted her doctors to learn all that they could from her. And she wanted future patients to benefit from her battle with the demon. Even dying, she kept paying it forward.

Walking with Jane was born out of my personal crisis after Jane's death. She always wanted to keep paying things forward. I still do.
Walking with Jane was born out of my personal crisis after Jane’s death. She always wanted to keep paying things forward. I still do.

One trial could be NET cancer key

awareness, Goals, Jane, Marketing NETs, NET Cancer Awareness Day/Month, NET cancer experiences

The polio vaccine trial

I lived in Pittsburgh, PA in the 1950s. I remember a summer when we were not allowed to leave the yard. I remember standing in line for the first mass inoculation with the Salk the polio vaccine. My parents knew my brother, sister, and I might get polio from it. They took that risk.

…our most important resource…

Today, polio is a nearly dead disease in this country–and in much of the world. It is dead because people were willing to spend the money to find a solution to it–and others were willing to put their lives–and their children’s lives–on the line to prove that solution worked.

One man’s trial

That drive started because one man decided to do something about it. He wasn’t a scientist. But he knew first-hand about polio because he’d survived it and it’s aftermath. He could not stand without braces. He spent most of his remaining life confined to a wheel chair.

They took that risk.

He started a little charity he called The March of Dimes because all he wanted was one dime from every American for polio treatments and research. He did a lot of other things in his life. He guided the United States through the worst years of the Great Depression and World War II.

A personal trial

Laying the groundwork for the end of polio is something we forget about Franklin Delano Roosevelt. He died years before Jonas Salk developed his vaccine. He died years before I stood in a line waiting to be injected with an experimental fluid designed to protect me from the disease.

He wasn’t a scientist…

What I remember most vividly was how big the needle looked–and how scared I was of it. I didn’t know what polio was. I had never known anyone who had it. But I knew my parents had kept us all in the yard for weeks one summer because some people in town had caught it.

The first time my universe changed

Years later, I met a man who had  polio in his youth in the days before the vaccine. He walked with the aid of a cane and a crutch. His one good leg dragged the other up the stairs and down the hall to his classroom every day.

I didn’t know what polio was…

The universe changed for me and many others because of a single trial of a single drug in a time I can barely remember. That trial meant I would never get polio–and that no friend of mine would ever get it. It’s why I never hesitate when someone asks me to get involved with a scientific trial–even when it puts my life or health at some kind of risk.

Jane’s personal trial

Jane shared that attitude for reasons of her own. She knew she was in serious trouble when she heard the diagnosis. She quickly learned she had cancer so advanced she was not likely to live long. There were no trials she qualified for.

That trial meant I would never get polio…

So she told her doctors to learn everything they could from her in every way that they could. She made sure I understood precisely what she meant by that. She wanted to beat NET cancer–but if she couldn’t do that and live, she wanted to make sure her death would help others with the disease–and help researchers find a way to beat NET cancer once and for all.

Our most valuable resources

There are lots of things we need to beat NET cancer: We need more doctors, researchers and lab techs; we need more labs doing both basic research and the translational research that turns that basic research into new drugs and new treatments; we need greater awareness among both doctors and the general public; and we need the cold hard cash that pays for those things.

She wanted to beat NET cancer…

But we need more than scientists and donors. We need patients and caregivers who are active participants in both treatment and awareness building; we need people willing to tell their stories beyond patient forums and support groups; we need blood and tissue samples; and we need people willing to take the same risks my parents took with the lives of their children–and their own.

The power of one trial

My wife killed her NET cancer the only way anyone with an advanced form of the disease ever has: she died and took it with her. But the way she died created new knowledge that has extended and improved the lives of other NET cancer patients. Some of you reading this are the unknowing beneficiaries of that knowledge.

…we need more than scientists and donors.

If we are going to kill NET cancer, none of us can sit on the sidelines, whether we are patients or caregivers. Awareness won’t happen by itself. Cures won’t happen without people willing to take part in trials. In the fight against NET cancer, our most important resource–fair or not–is each other.

There was no trial Jane could take part in, so she found her own way to move the science forward.
There was no trial Jane could take part in, so she found her own way to move the science forward.

Five years ago–surgery day

Death, Grief, Jane, NET cancer experiences, Uncategorized

Dark days of the soul

Jane was in surgery five years ago today as I write this. Part of me wishes she had had a less competent surgeon that day–someone who would not know how to deal with the damage to the heart he found when he opened her chest. It would have spared her the 25 days that followed.

…the price of all that is beyond counting…

I remember everything about that day in too vivid detail. I remember taking off her wedding ring. I remember the hours in the waiting room. I remember the walk up the street to the church where two friends were married–where Ted Kennedy sat when his son was in surgery–where the “liberal lion” of the Senate had had his funeral. It is all long and silent.

A single day

I remember coming back to the waiting room. I remember them sending me off to eat with a pager in my pocket. I remember coming back and watching the other people leave, until I was the only person left. I remember them closing the room and sending me to a waiting area of the sixth floor, right outside the ICU where Jane would arrive after the surgery.

It is all long and silent.

I remember trying to distract myself with television shows. I paced. I looked out the window at the street below and at the buildings across the street. And I remember thinking, this is taking too long–something is wrong.

Living and dying

And something was. The valves in the right side of Jane’s heart were so damaged that the serotonin had begun damaging the area where the new valves were supposed to attach. The surgeon had to sculpt a new seating for them into the flesh of Jane’s heart. A lesser surgeon would not have seen in his mind how to do that. A lesser surgeon would have been forced to let her die.

…something is wrong.

Sometimes I think about the what-ifs of that night. I wonder what would have happened if the surgeon had come to me and told me she was gone. I wonder if her death would have been harder or easier to bear. I wonder if I would be doing what I am doing now. I wonder how my relationship with her doctors would have been different–my relationship with our friends.

The day the world changed

I do know that there are people alive today who would not be if that had happened. They had heart surgery after Jane battled through four carcinoid crises–the last of which killed her. Her doctors learned from those and what they did to stop them. There is consolation in that–but it has not stopped the tears, especially not today.

…I think about the what-ifs…

I went to the wake for the father of some friends this afternoon. Jane and I had his grandchildren in class. They were the kinds of kids you don’t forget. Jane would be proud of them and the people they have become–as am I. She should have been there in more than spirit to see them.

Too much memory

A memorial service was held right after the wake. I’d planned to stay for it. But I could feel the tide rising. I had to get out of there before I lost it. Seeing our friends was one thing–seeing our students in that setting–was too much. Maybe on a different day than this one, it would have been different. But today…

There is consolation in that…

Today, I realized Jane really didn’t come out of that surgery. Her body worked–sort of. The heart pumped and the lungs pushed air in and out. The mouth formed words. But the anesthesia clouded her mind so badly she didn’t know what day it was until December 3. And the endless diarrhea stripped off her dignity more rapidly than her weight.

Forging tomorrow

Yet she stayed with me as much as she could for 25 days–and we forged something out of those days. I don’t know who I’d be without those last fragmentary days–or what I would be doing. I don’t know how many lives we touched in those days–nor how many since and in the future. I think I am a better person than I would have been without them.

Her body worked…

But the price of all that is beyond counting–and today it hurts more than I can say.

One reason I work on NET cancer issues is that I don't want anyone else to face a life alone without their other half.
Every day this month I try to do something to raise awareness about NETs. It is doubly difficult because the these days encompass the worst days in my life.

My experience: surgery and progression

Metastases, NET cancer experiences, Personal treatment stories, Treatments, Uncategorized

(Editor’s note: This is Part 2 of Beth R. McGivern‘s piece on her experience with NET cancer. In Part 1, she talked about her experience with the initial diagnosis of her disease and her decision to take part in the Gallium-68 PET scan trials. She detailed her experiences with that scanning method, as well. In Part 2, she talks about her decision to have surgery, and her recent discovery that her disease is progressing again.)  

DFCI weighs in

I went to Dana-Farber (DFCI) in early 2013 for a consult. Dr. Jennifer Chan was very clear and honest about my situation– it was the first time that I felt I was hearing the whole situation and potential consequences of my decisions. She said that the large tumor was already pressing in on my small intestine–she showed it to me on a CT scan slice–and that there was near certainty that I would have a bowel obstruction due to that tumor at some point in the future.

Hopefully, the progression will be slow. 

This was quite similar to Dr. Liu’s opinion, except she was an oncologist, not a surgeon. She set me up to meet with a surgeon and said that Dana-Farber was not going to do a huge, long surgery to get most of the extensive tumors out. They would take out the large tumor and the part of my small intestine that was causing the problem and whatever was nearby, but would not take out the smaller, more widely spread tumors. The surgery would be 3-4 hours.

Moving forward

At that point I had three opinions for surgery and two for watch and wait. I met with the surgeon, was convinced that this was a necessary step, and moved my care to DFCI. I was still nervous about the surgery and waited until after the summer because I wanted to be healthy for my niece’s wedding in August.

They would take out the large tumor…

I had the surgery in September, 2013 and they removed about 90 percent of my tumor load.   During the surgery they removed two large tumors (the one hanging from my liver and a pelvic tumor that was about 6.6 cm) plus about 100 cm of my small intestine.

Surgery impact

Also removed was a 1 cm tumor in my right ovary and the corresponding fallopian tube.  The doctor did not remove my gallbladder which is ok with me because I’m not having any trouble with it. The surgeon said that he got more than 90 percent of the tumors out, which is excellent.

I was still nervous about the surgery…

The surgery was large; I had tubes coming out of every orifice and I was in the hospital for six nights. The recovery took a long time.  Long term effects of the surgery have been difficulty with nutrition absorption, frequent bowel movements and some loss of bowel control.

Post-surgery, I continued on Sandostatin LAR with semi-annual scans–and things remained status quo until this March. Then it finally happened: the dreaded news of cancer progression. After 4+ years on Sandostatin LAR and the debulking surgery, my remaining tumors have started to grow and progress. The good news is that there are no new visible tumors.

Progression

This March, my MRI showed tumor progression in my liver and one of my lymph nodes.  We increased my dose of Sandostatin LAR from 20 mg to 30 mg in March, hoping that might slow down any further progression. My doctor wants to do another MRI in July to see if the tumors are still progressing. In July, if the tumors are stable, we’ll just continue with the 30 mg Sandostatin LAR.

…my remaining tumors have started to grow…

Since there are no approved drugs for mid-gut NET patients who have progressed on Sandostatin LAR, Dr. Chan mentioned some clinical trials that I might be well suited for that are going on at Dana-Farber:

  • Immunotherapy Phase 1B trial of MK-3475 for patients with advanced solid tumors
  • Angiogenesis inhibitors (a new form of chemotherapy)–there are a few choices for me in this category

Immunotherapy?

The immunotherapy trial sounded interesting.  MK-3475 is the immunotherapy drug that has been used in advanced melanoma patients that has put some of them into remission.  It works by targeting a protein called PD-L1 that allows the cancer cells to live and multiply without disturbance from the immune system.

We increased my dose of Sandostatin LAR…

MK-3475 is a drug that blocks the PD-L1 protein so that your own immune system can attack the tumor. Basically, if my tumor tested positive for PD-L1 then I would be eligible to try this clinical trial to see if the drug would work for my NETs.

Other options

Unfortunately, my tumor was not positive–and from what I understand, none of the NET tumor samples tested positive.  I guess it means that this particular pathway to immunotherapy does not work for NETs – and from what I’ve heard, most other gastrointestinal cancers. So if the tumors progress further, it’s on to angiogenesis inhibitors for me.

The immunotherapy trial sounded interesting.

These drugs have dissimilar side effects from most conventional chemotherapy medications because they work very differently. Rather than killing healthy cells along with cancer cells, as many chemotherapy drugs do, angiogenesis inhibitors only prevent new blood vessels from forming.

Fighting angiogenesis

At this point, there are no FDA approved angiogenesis inhibitors for mid-gut NETS.  For pancreatic NETs, Sunitinib (Sutent) and Everolimus (Afinitor) are approved. The clinical trials that my doctor presented to me are for two drugs:

  • Cabozantinib:  This is a phase 2 trial of a drug that is already approved for thyroid cancer.
  • Aflibercept:  This is also a phase 2 trial of a drug that is already that is approved for colorectal cancer.

…angiogenesis inhibitors only prevent new blood vessels from forming.

Both these drugs, like all cancer drugs, have multiple side effects associated with them.  All things being equal–and I don’t know if they are–I’d take the Cabozantinib because it is available in pill form rather than as an infusion. Neither of these clinical trials is randomized, meaning that there is no placebo arm, so if I do one of them, I will definitely be getting the real drug.

Considering options

My issue with angiogenesis inhibitors is that they seem to work better for pancreatic NETs than for mid-gut NETs.  My feeling is based on some articles I have read and the fact that they are only FDA approved for pancreatic NETs. My doctor generally agrees with me, but believes that the inhibitors may still work for mid-guts, just not as well as they do for pancreatic NETs.

…I will definitely be getting the real drug.

She also suggested taking Afinitor on an off label basis, meaning that it is not approved for my specific condition. It is already approved for pancreatic NETs, so if I took Afinitor, at least I would not be subject to the rigorous rules of a clinical trial. Novartis released information last week about a phase III trial called Radiant-4 that showed Afinitor met the trial goals for gastrointestinal and lung NETs. This study might be enough for the FDA to approve Afinitor for other NET types than pancreatic.

Into the future

I asked her if we should consider peptide receptor radionuclide therapy (PRRT). She said that this could be a possibility at a later stage. At this point my tumor load is light and I don’t have too much carcinoid syndrome. The angiogenesis inhibitors make sense to see if that helps slow progression.

She also suggested taking Afinitor…

My doctor thinks that there may be PRRT trials available for mid-gut NETs in the US in the next year. It may make sense to partake in that treatment. I could also go to Europe for PRRT, where they are much farther along in the development of this therapy. I have some time to think about this as I wait for my disease to progress. Hopefully, the progression will be slow.

(Editor’s note: Beth R. McGivern walks on our NETwalkers Alliance Jimmy Fund Marathon Walk team. All funds raised by that team go to support NET cancer research at DFCI. If you would like to donate to Beth’s walk, you can do that here. If you would like to join our team, you can do that here.)

For most, surgery only offers time for us to find a real cure for NET cancer. Working together, we can end NET cancer.
For most, surgery only offers time for us to find a real cure for NET cancer. Working together, we can end NET cancer.

My experience: Gallium-68 scan

Metastases, NET Cancer Awareness Day/Month, NET cancer experiences, NETwalkers Alliance, Personal treatment stories, Treatments

(Editor’s Note: This is the first of two parts of a piece Beth R. McGivern has written about her NET cancer experience. In this section, she talks about her diagnosis and her experience with the new Gallium-68 scan that is nearing the end of trials in the US. In the second part, she talks about her surgery and the drug trials she is now considering. That piece will run here the end of next week.)

by Beth R. McGivern

Discovery and questions

In 2010, I was diagnosed with widely metastatic disease with tumors all over my abdominal and pelvic area, the largest being a 12x10x8 cm tumor hanging from my liver. Surprisingly, there were only a few very small tumors in my liver.

…the expert opinions were so divided as to what I should do.

My first specialist started me on monthly Sandostatin injections but did not believe I should have surgery. I then had another specialist review my case through a second opinion service sponsored by my employer. This doctor also did not believe I should have surgery.

Scanning options

I was quite dissatisfied with my first specialist so I changed to another doctor and they suggested that I have an octreoscan, which I had never done. I had heard that there was a better scan called a Gallium 68 PET (68-GA) that was much better at detecting tumors than the octreoscan. This doctor thought I should have a de-bulking surgery and the octreoscan would help define my tumor load and surgical plan.

My first specialist started me on monthly Sandostatin...

The FDA has not approved the 68-GA PET as a diagnostic test in the US at this point. At the time of my investigation, the closest place to get into a clinical trial for a 68-GA PET was at Vanderbilt University in Nashville, TN. The problem with the clinical trial was that it would not be covered by standard medical insurance.

Goals and fears

The goals of this test were 1) to get an accurate idea of my tumor load, 2) to see if I had the receptors that would make some of the radiopeptide therapies available in Europe a treatment option for me and 3) to get another opinion about how I should treat my disease.

The FDA has not approved the 68-GA PET as a diagnostic test…

In July 2012, I had my appointment with Dr. Eric Liu, followed by my scheduled 68GA PET scan. This was my first scan other than a CT. I was nervous about being injected with a radioactive tracer–it just sounds a bit scary.

Last in line

Dr. Liu was very articulate and professional and spent a lot of time with me. I was very impressed with my experience at Vanderbilt-Ingram Cancer Center. Dr. Liu talked about my experience to date to gather some history. He said the 68GA PET scan would answer two questions: 1) Do I have appropriate receptors for the scan to work? 2) What is the extent and location of my disease?

…it just sounds a bit scary.

The doctor said I was the last of the 50 patients that were in this clinical trial. He also mentioned, that he would appreciate it if I made a $2,000 contribution to Vanderbilt. The money would allow him to continue this important work to secure FDA approval for this scan in the US. This cost was explained to me up front before my appointment, so there was no surprise here.

Pre-test procedure

Dr. Liu said the injection should not hurt or cause any side effects–but an EKG was required before and after the scan. He assured me the radioactive tracer has a very short half-life and that I would be fine going through airport security the next day. We also discussed my doctor experiences in NYC, some of which had been “suboptimal”, and how it might work if I were to use him to treat my disease since I live so far away.

…I was the last of the 50 patients…

The prep for the scan included the EKG and the 68GA injection. Then I drank the same large container of barium contrast that I have had for all my CT scans. This process took about an hour. The injection did not sting, burn or cause any adverse consequences.

The scan experience

The PET scanner is similar to a long CT scan machine. The drill is that you have to lie on your back with your arms above your head and not move for about 30 minutes. The machine does not tell you to breathe in and out like the CT scanner does.

The injection did not sting…

Some people have issues being put into the enclosed tunnel-like machine but I just kept my eyes closed and tried not to move. Dr. Liu came into the room while the scan was going on. This surprised me as I had my eyes closed. He encouraged me to stay still and that I was doing a great job. It was a nice pep talk.

Scan results

After the scan was over I went for the second EKG and then to lunch.

It was a nice pep talk.

Later in the afternoon, we met again with Dr. Liu. He said he did not have the report yet but that I was positive for the receptors and although I have extensive disease there is no evidence of metastatic disease outside of the abdomen/pelvis.

Surgical questions

With the help of a radiologist, Dr. Walker, we reviewed the scans. The CT scan was right beside the 68GA scan on the computer screen. It was quite amazing, though I had no idea what we were looking at. The doctors said I had very low liver involvement with one definite liver metastasis to the right lobe and a possible metastasis to the left lobe.

…I was positive for the receptors… 

The largest tumor hanging from my liver would most probably cause a bowel obstruction should it grow. There was also, they said, multifocal small bowel disease. That is where the primary tumor is located.

More surgical questions

Dr Liu said that he definitely thought that this was resectible because all of the tumors are in the abdomen and pelvis, i.e., not bone, brain or other mets. Surgery, although not curative, would mean that I would most likely die of something else other than carcinoid cancer.  He described the surgery as major– probably six hours in the operating room with a 6-8 week recovery period.

…I had very low liver involvement…

Dr. Liu was the third carcinoid specialist that I had seen. Two had recommended taking Sandostatin and “watch and wait.” I took Dr. Liu’s surgical recommendation  lightly as he is a surgeon and they usually recommend surgery.

Looking for answers

I was seeing another specialist in New York who was also recommending surgery and putting some pressure on me to do this, but I was uncomfortable because the doctor was not being clear as to what the surgery would entail or the rationale for it. Also, I was not comfortable with a giant abdominal surgery when I had no symptoms and the expert opinions were so divided as to what I should do.

He described the surgery as major…

At this point, I had two opinions for surgery and two for watch-and-wait. Later in 2012, I went to a conference sponsored by the New England Carcinoid Connection support group in Boston and heard some of the doctors from the Dana-Farber Cancer Institute speak. I thought they were more conservative and concerned with quality of life issues than most of the other doctors I had been to. I decided to get my fifth opinion there and that would break the surgery-or-watch-and-wait tie that I was in.

(Editor’s Note: Beth R. McGivern is a member of our NETwalkers Alliance Boston Marathon Jimmy Fund Walk team. You can make a donation to her Walk effort here.)

Together, we can do anything--nothing is impossible. Let's cure NET cancer.
Together, we can do anything–nothing is impossible. Let’s cure NET cancer.

Liver embolization–some background

Carcinoid/NET News, Metastases, NET cancer experiences, Treatments

Liver lessons

Liver embolization therapy  is a directed therapy that takes advantage of the unique vascular supply of the liver to go after inoperable cancers that form in the liver. The method is seeing increasing use in NET cancer patients because they are often not diagnosed until the metastases in the liver are well along in their development and have colonized the liver to the point surgery is not a good option.

Not everyone is a good candidate…

Unlike the other organs in the body, the liver is not primarily fed by an artery. Rather, it gets 80-90 percent of the nutrients it needs through the hepatic portal vein system before shipping that blood onto the heart to be sent to the lungs for oxygen. The oxygenated blood then returns to the heart to be distributed to the rest of the body.

Tumor weakness

The hepatic artery does carry some nutrients to the liver, but the liver is not very dependent on those supplies. Blocking it or its downstream capillaries doesn’t seem to do the liver any longterm harm. But it can do the tumors significant harm. They get all their food and oxygen coming in on that arterial pathway. They even create their own vasculature to steal supplies to help them grow.

The method is seeing increasing use in NET cancer patients…

Regardless of where a tumor forms in the body, that desire for blood flow creates a weakness in any tumor. If we can prevent blood vessels from forming, the tumor will starve to death in short order. Several different drugs are designed to try to do this (angiogenesis inhibitors)–they may be the only option for affecting the vasculature of tumors growing in most places in the body. You can’t easily block an artery that is feeding both cancerous and healthy tissue.

Enter embolization

But the peculiar way the liver works means blocking arteries is not entirely–or necessarily–a bad thing, and that opens up another avenue of attack. If we can block the small arteries leading to a tumor, then the tumor will starve to death the same way a city under siege does. There may be some damage to surrounding tissue, but that damage is comparatively minor–and the liver is very good at repairing itself.

But it can do the tumors significant harm.

Researchers have developed three methods of liver embolization: bland (TAE), chemo (TACE), and radiation (TARE). All three use small beads to block the blood supply to the tumors, but the beads are treated with drugs before being inserted in chemoembolization, and impregnated with radiation in radioembolization. The bland embolization beads are sterile, but not treated with anything. They simply block the blood supply to the tumor.

Embolization fundamentals

The chemo and radiation treated beads deliver their payloads directly to the tumor, which means less chance of damage to surrounding healthy tissue and fewer side effects than regular chemo or external radiation treatments can entail. For NET cancer, TACE beads can be treated with a number of different chemical agents, either singly or in combination; Y90 is used with the irradiated beads used in TARE for NET cancer: SIR-spheres or TheraSpheres, the primary difference being how big a dose of radiation each sphere carries.

…the tumor will starve to death…

The basic procedure is the same for all three forms of liver embolization. A small tube is inserted into the femoral artery and threaded up to the liver. That tube is then used to place the tiny beads into the arteries leading to the tumors. The doctors only do one lobe at a time. The second lobe is done about a month after the first, if necessary.

Embolization impact

Liver embolization can be repeated later if the tumors return or begin to grow again if the first round of embolization is successful. The procedure may improve the quality of a patient’s life and extend that life. But it does not work for everyone, and none of these treatments offers a cure for the disease. It can only reduce the size and number of the tumors in the liver and may provide some relief from the symptoms of the disease for a time.

The basic procedure is the same for all three forms…

There is a wide range of side effects–ranging from minor to severe, including–among the most negative–liver failure, kidney failure and death. But the more severe side effects are rare–death occurs in less than five percent of all cases, and is less frequent the more experience the doctor has with the procedure.

Good news–bad news

At least one of the side-effects, postembolization syndrome (fever, nausea, vomiting, abdominal pain, and elevated liver enzymes), occurs in most patients. Strangely, the severity of that one side-effect may be an indicator of the success of the procedure rather than an indication of failure, as those with more severe versions of it seem to have had a better reduction in tumor size than those with milder reactions.

 The procedure may improve the quality of a patient’s life…

Not everyone is a good candidate for this procedure and it should not be used if the tumors can be dealt with surgically in any event. And even for those who are not good candidates for surgery, it is not always possible. The greater the tumor burden, the less likely it is to be an option. Where exactly the tumors are in the liver also makes a difference.

A final point

The purpose of this article is not to give medical advice. Rather, it is designed to provide basic information about liver embolization for a non-medical audience. As with any medical procedure or treatment, you need to discuss your particular case with your doctor.

Until there is a cure, we'll keep walking. Come join us for this year's Boston Marathon Jimmy Fund Walk on September 27.
Until there is a cure, we’ll keep walking. Come join us for this year’s Boston Marathon Jimmy Fund Walk on September 27.