Did April Fool’s Day Come Early This Year?

Last month, I spent a night in the hospital after a liver embolization.  I stayed in a very small double room with a roommate.  Recently, I got an explanation of benefits from United Healthcare, my secondary insurance (see below).  Note that the amount billed for one night at Memorial Sloan Kettering Hospital is $55,746.78!  Who bills that amount for a one night hospital stay? 

Do you think this is a typo?  I know NYC rents are rising fast but this is ridiculous!

Second Time for Bland Liver Embolization

Wow! It’s been a while since I wrote a blog post!  Since my last post in August, I had another CT scan in November that showed that the group of tumors in the left side of my liver had grown from an area of 6.8 x 1.7 cm to 8.3 x 2.2 cm.  This was not one tumor but a group of about 10 smaller tumors.  My doctors said I should do another liver embolization - on my left side this time. This procedure was set for December 5^th.

I knew this was coming and was glad to have had about 5 months between embolizations. The procedure was similar to the one I had on July 15^th but I spent less time in the hospital.  The pain was worse from the recent embolization, probably because the tumors in my left side were much more concentrated in one area.  That’s my theory, anyway.  I felt better in about 3 weeks and was reasonably healthy for Christmas and the New Year. 

My January 7^th post-embolization CT scan showed that the tumors on the left side of my liver had shrunk and were mostly dead (“necrotic”). There was a tumor in the middle/right segment of my liver that was embolized in July but still had some living (“viable”) tumor showing on a CT scan.  My interventional radiologist revisited that tumor in my recent surgery to embolize the areas that were not being fed by the hepatic artery.  Unfortunately, he was not able to completely “kill” that tumor and that’s why there is still some viable tumor there.  Overall, my doctors (interventional radiologist and oncologist) were very pleased with the results of the procedure.

My “syndrome” which had consisted of very occasional flushing has completely disappeared.  I stopped taking Sandostatin LAR in January 2016, prior to my PRRT clinical trial and have not resumed since.  My doctor and I have discussed whether I should stay on a somatostatin analogue since I don’t have syndrome and my tumors have already progressed while on Sandostatin LAR. These are the issues that came up:

• Patients who don’t take Sandostatin LAR have a higher incidence of carcinoid heart problems.  My doctor ran an echocardiogram and found that I have no evidence of any heart problems
•  My tumors started progressing in late 2015 so I’m not sure whether Sandostatin is still helping them grow “less fast” or not. My doctor doesn’t know either.
• I do not have “carcinoid syndrome” at all right now
•  Sandostatin LAR has always caused me icky side effects – mostly gastrointestinal - that make my life miserable

After reviewing the above, we both agreed that is was ok for me not to take Sandostatin LAR. 

At this point, my tumor load is quite low with only smaller tumors located in inoperable places.  I am in “watch and wait” mode for 3 months until I have another scan. I hope 2017 brings me more stability and fewer medical procedures!

Bland Liver Embolization was a Success!

On July 15^th, I had a bland liver embolization on the right/middle of my liver.  This is a minimally invasive surgical procedure where “beads” are put into the arteries in the liver to block the blood flow to the tumors.  The beads are inserted via a small tube in an artery the groin area.  By blocking the blood flow to the tumor, it should experience necrosis or tumor death.   For more information on the different types of liver embolizations and an explanation of the procedure, please take a look at the blog Walking with Jane as follows:

http://walkingwithjane.org/2015/04/28/liver-embolization-some-background/

My doctors explained that the bland embolization was safer for me than either chemoembolization or radioembolization because my tumors were extremely vascular, meaning there was a lot of blood flow to the tumors.  Both chemoembolization and radioembolization use beads treated with chemotherapy or radiation, respectively, to treat the tumors.  The risk of treated beads is that they can miss the target of the liver tumors and apply chemotherapy or radiation to the wrong areas of the body. Bland embolization, which uses untreated beads, can also miss the target and wind up in another area of the body but these beads may be less harmful without the chemotherapy or radiation. When having this procedure, it is important to have an interventional radiologist that has a lot of experience with liver embolization.

Many times, a patient will need two treatments, one for each side (lobe) of the liver.  These treatments are usually about a month or more apart.  I just had a one month CT scan and a post-op appointment with the interventional radiologist who said that the embolization went very well and that the tumors that were embolized were dead.  He showed me the images on the CT scan and they were all black.  The largest mass in my right lobe was 8.8 x 4.8 cm and the next largest was 4.4 x 3.1 cm.  At this point the tumors in the left side of my liver are very small and my doctors do not believe that they should be embolized unless they grow.  They will monitor with another CT in November and do the left side embolization if they grow. 

After the embolization I experienced postembolization syndrome (fever, nausea, vomiting, abdominal pain, and elevated liver enzymes).  It was quite painful for 2-3 days after the procedure.  After about a week, I felt a little better but I could still feel my liver area every time I inhaled, which was annoying.  This lasted several days and then I really had no symptoms after about 3 weeks post-embolization.  My alkaline phosphatase, one of the liver enzymes measured in a comprehensive metabolic panel is still elevated and my doctor said it could stay that way for a few months.  The rest of my liver enzymes are normal now. Also, I used to have occasional flushing, even when taking Sandostatin LAR.  Since the embolization, I have not had one episode of flushing.

On another interesting note, the tumors outside my liver, mostly in and around my lymph nodes, have been stable since I had the first round of PRRT in the clinical trial.  I wonder if the PRRT might have worked on these tumors, just not for the liver lesions. Now it’s time to give my body a break from treatments for a few months.

Peptide Receptor Radionuclide Therapy (PRRT) Did Not Work for Me

Ugh, after one round of PRRT with Lu-177-dota-JR11, my existing tumors progressed in the liver and there was also a new tumor seen there.  This is my first new tumor since my diagnosis in 2010.  Given this information, I was removed from the clinical trial since the treatment did not work as expected for me.  The tumors in the lymph nodes were stable or slightly smaller but the growth of the liver tumors and the new 1.4x1.3 cm tumor in the liver was what disqualified me.

I was under the impression, wrongly, I guess, that if my Ga-68 scan “lit up like a Christmas tree” that I would be a good candidate for PRRT.  In reality, the objective response rates, as shown by multicenter reports from Europe are seen in 15% - 35% of patients (see this article http://www.ncbi.nlm.nih.gov/pubmed/25117465). This is much lower than I thought given the information about PRRT that I have seen and heard through my experience.  In reality, I do not read a lot of scientific papers and depend on my doctors to give me information.  Dr. Reidy-Lagunes said that she feels bad when she recommends patients for PRRT in Europe because they are paying a lot of money out of pocket for results that are great if it works for them but the chances of a complete response, meaning tumors are gone or have shrunk 50% are less than 35%. 

I asked Dr. Weber, the head of nuclear medicine at Sloan Kettering, if he thought that I would respond more positively to other radiolabeled agents such as Y-90 or other peptides such as dotatate or dotatoc and he said “It is hard to predict if other forms of PRRT will potentially be effective.  All the clinically used PRRTs target the somatostatin receptor (as does JR11).  Therefore the limited effect of JR11 on the liver metastases also decreases the likelihood of a response to other PRRT agents.” 

So, unfortunately my PRRT experience was not successful.  I’m still glad I entered this trial and I would have even if I had known that my probability of objective response was 15% - 35%.  This is not to say it will be unsuccessful for others as I know of one other participant in this PRRT clinical trial that has had 50% reduction in tumor size after one round.  I think it is important to understand that although PRRT is a great new treatment that is going to be available soon in the US, it does not always work, even if you have the proper receptors. 

Dr. Reidy-Lagunes and Dr. Chan both said that a liver embolization is the next treatment I should consider.  I am meeting with an interventional radiologist tomorrow to discuss this procedure.  

When Breath Becomes Air

When Breath Becomes Air by Paul Kalanithi is one of the best books I’ve read about the experience of life, cancer and mortality.  The author had degrees in English literature and biology and chose to go to medical school.  He was diagnosed with lung cancer during his residency in neurosurgery at Stanford.  He came to my attention after I read an editorial he wrote in The New York Times that I shared on my blog here:

 https://bethsadventureswithcancer.blogspot.com/2014/01/how-long-have-i-got-left.html   

This is my definite “best book” pick of 2016, even though it is only May. 

Below are some quotes from the book.  I would definitely recommend reading the book as one can’t get the whole amazing experience from a few quotes.

On dissecting a cadaver in medical school:  “Cadaver dissection epitomizes, for many, the transformation of the somber, respectful student into the callous, arrogant doctor.”

On being diagnosed with cancer:  "I began to realize that coming in such close contact with my own mortality had changed both nothing and everything.  Before my cancer was diagnosed I knew that someday I would die but I didn’t know when.  After the diagnosis, I knew that someday I would die but I didn’t know when.  But now I know it acutely.”

“The word hope first appeared in English about a thousand years ago, denoting some combination of confidence and desire…Medical statistics not only describe numbers such as mean survival, they measure our confidence in our numbers, with tools like confidence levels, confidence intervals and confidence bounds…Could we divide the curve into existential sections from ’defeated’ to ‘pessimistic’ to ‘realistic’ to ‘hopeful’ to ‘delusional’?  It occurred to me that my relationship with statistics changed as soon as I became one.”

“While being trained as a physician and scientist had helped me process the data and accept the limits of what that data could reveal about my prognosis, it didn’t help me as a patient.  It didn’t tell Lucy and me whether we should go ahead and have a child, or what it meant to nurture a new life while mine faded.  Nor did it tell me whether to fight for my career, to reclaim the ambitions I had single-mindedly pursued for so long, but without the surety of the time to complete them.  Like my own patients, I had to face my mortality and try to understand what made my life worth living.”

“I would have to learn to live in a different way, seeing death as an imposing itinerant visitor, but knowing that even if I’m dying, until I actually die, I am still living.”

“The tricky part of illness is that, as you go through it, your values are constantly changing.  You try to figure out what matters to you, and then you keep figuring it out. You may decide that you want to spend your time working as a neurosurgeon but two months later, you may feel differently.  Death may be a one-time event, but living with terminal illness is a process.”

“Time for me now is double edged.  There are, I imagine, two responses to that realization.  The most obvious might be an impulse to frantic activity: to ‘live life to its fullest’, to travel, to dine, to achieve a host of neglected ambitions.  Part of the cruelty of cancer, though, it’s not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day.”

Enjoy the book and honor our fallen soldiers on this Memorial Day.

Peptide Receptor Radionuclide Therapy (PRRT) Clinical Trial at Memorial Sloan Kettering

It’s been a long time since my last post.  I have been doing a lot of procedures for the PRRT clinical trial that I am a participant in at Sloan Kettering (MSKCC). 

I was lucky enough to get into this clinical trial because my doctor, Dr. Chan at Dana Farber, called Dr. Reidy-Lagunes at MSKCC to see if there was space available  for me if I met the qualification criteria. I was happy that they could cooperate with each other even though they work at competing institutions – sometimes politics can interfere with the best interests of patients.

This clinical trial is testing the use of a new peptide (DOTA-JR11).  The goal of the trial is that in patients with positive somatostatin receptors, the DOTA-JR11 will bind to the tumors and the attached radiation Lutetium-177 (Lu-177) can kill the cancer cells. 

The clinical trial has been extremely scan intensive and I had the following two scans before even entering the trial:

• CT scan of the chest, abdomen & pelvis
• Octreoscan

Diagnostic Phase

Once in the trial, I had the following scans, and this was just in the diagnostic, not the treatment part of the trial:

• Glomerular Filtration Rate (GFR) - Scan to measure kidney function
• 68-Ga PET scan with 68-Ga-DOTA-JR11 - Scan to measure if my tumors have the right receptors to bind to DOTA-JR11

These 4 scans were all done within less than a week.  My insurance company (Aetna) routinely denies most of my scans and they did so with the GFR scan.  Dr. Reidy had to call their affiliate company EviCore who acts as Aetna’s “bad cop” because they are the entity that denies most scans, to explain that it was a safety issue and then it was approved.  The good news is that I passed these scan diagnostics as well as the blood and other tests.  

Next phase of the trial:

Treatment Phase

The first step of the treatment phase consisted of dosimetry.  This procedure is a test of Lu-177 in the body to see how much radiation it delivers to the tumors and to your normal organs, primarily the kidneys.  The procedure is to give the patient IV amino acids to decrease the amount of Lu-177 that is absorbed by the kidneys.  Then an injection of a small dose (50 millicuries) of Lu-177 is given.  The IV amino acids are given for 3 hours.  Immediately after the IV is done, the patient gets a 20 minute PET scan that shows the distribution of the Lu-177 in the body; i.e., the kidneys, the tumors and other organs.  In addition, the same 20 minute scan is done at 24 hours, 4 days, and 8 days after the dosimetry.  There is also a SPECT/CT scan done at 24 hours to see a 3-D image of the distribution of Lu-177 in the body.  This series of scans is what the nuclear medicine doctors and medical physicist (never heard of that before!) looked at when they decided what dose of Lu-177 to give me when I did my first round of PRRT a few weeks later.

You can only imagine how all these scans got my insurance company (Aetna/EviCore) into a denial frenzy!  I got letters and robocalls from EviCore practically every day for the past month as they tried to deny my scans and then approve them after a call from the doctor.  What a crazy health system we operate in!  

The dosimetry left me quite fatigued and nauseous for about a week afterward. I felt like I had the flu.  Dr. Reidy gave me a prescription for Zophran, an anti-nausea medication to take 3 times a day as needed for up to 15 days.  Of course, my drug provider, Express Scripts has set up this drug so that I can only get 12 pills at a time, meaning that it takes 4 trips to Walgreen’s to get my 45 pills.  Nice way to treat a nauseous cancer patient!

I had the first round of PRRT a little over a week ago.  The procedure was exactly the same as the dosimetry except the dose of Lu-177 was 200 millicuries.  I’ve now finished all the scans and the flu/nausea symptoms are getting better.  I’ve managed to use the same 45 Zophran pills for both the dosimetry and PRRT so as not to spend so much time on line at Walgreen’s….I’m still getting letters every day from Aetna/EviCore asking my doctor for more information and denying the post-PRRT scans….

In between the rounds of PRRT, I will be getting blood tests done every 2 weeks.

This clinical trial allows for 2 rounds of PRRT.  I believe my next round will be in 10-14 weeks.  I will have a scan right before the next round to see if my tumors have shrunk, stayed stable or grown.  If they have grown, I will not be doing the next round as the PRRT would not have worked as expected. 

I’m hoping that that my tumors shrink and am looking forward to seeing what my next scan shows in a few months.  

So Much for Tumor Stability

I am now off the Cabozantinib clinical trial. My latest MRI showed 11% growth in my tumors since the last scan on November 22^nd.  Basically my tumors grew 22% in the 6 months I was on this clinical trial.  Not good! I have now decided that peptide radionuclide receptor therapy (PRRT) is my next treatment plan.This treatment is not FDA approved in the US, so the only current availability is:

1. A clinical trial at Memorial Sloan Kettering Cancer Center (MSKCC)
2. Going to Excel Diagnostics in Houston to do the PRRT under a “Right to Try” law.   

I could also go to Europe where several countries provide PRRT to neuroendocrine cancer patients. Given that I live in New York City, going to MSKCC would be the easiest option.  Also, my husband is having medical problems now as well and I am both patient and caregiver, a very difficult set of responsibilities.

I met with the MSKCC oncologist, Dr. Diane Reidy-Lagunes, on Wednesday to discuss the PRRT trial.  Her staff was concerned with my platelet levels because they were below 200 in January, which is the minimum allowed to be admitted this trial.  Since I have been off Cabozantinib for about 3 weeks, my labs have been improving and my platelets were fine.  I am now scheduled for several scans before the PRRT occurs. Since I have not been off Sandostatin for 6 weeks, I am scheduled for the scans later this month.

It felt strange to go back to MSKCC after leaving my first doctor there about 4 years ago.  Dr. Reidy and the clinical trial assistants were very nice and professional, unlike my prior experience.  I am looking forward to being in this trial.  I hope it shrinks and stabilizes my tumors for a while.