Tag Archives: Dr Hirschfeld

A Summary Shout Out to Bruckner Oncology

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Please Note: I still owe you an update of my next medical steps – coming soon! Until then let me close out this phase with the great Team Bruckner.

Back in June 2014 I posted about Joining Team Bruckner. I have made subsequent posts about the experience on the Livingly Dying blog. I completed a total of 13 treatments, each two weeks apart and all requiring out of state travel because I could not find an Oregon oncologist to provide the treatment.

I traveled to the Bruckner Oncology clinic in NYC four times and completed an additional 9 treatments in California under their guidance. As I take a break from the protocol it seems a good time for a summary update.

Bruckner Oncology is where many patients go when their oncologists say, “There is nothing more we can offer you.” Some patients, like me, start earlier in the process usually motivated by a cancer crisis. Over the last three years the docs at Bruckner Oncology have increasingly wrapped their big brains and huge hearts around recurrent ovca (ovarian cancer) because they like to focus on the cancers that stay especially deadly.

The partnership between the elder Dr. Bruckner and the younger Dr. Hirschfeld is a thing of beauty allowing every patient access to their best collegial thinking. I have worked with oncological teams in four different settings beyond Bruckner Oncology. I have had few complaints. My teams were caring and solid. I accepted the extremely limited contact with my actual doc. Nurse intermediaries represented me between the 15-minute visits with my oncologist. It worked but rarely felt like it encouraged dynamic problem solving.

To arrive at Bruckner Oncology is to leave that tiered system behind. Yes, there are PA (physicians assistants) and receptionists but they are a bridge not a barrier to your bountiful time with the doctors themselves. I can email or call my doctors directly at any point and expect a sprightly response – even when one is in Europe and the other had a baby late the night prior.

It’s a people’s clinic. No one is turned away. Every problem has an answer and they just don’t stop trying creative possibilities. Saying that, patients still die there. Recurrent, late stage cancer is not an easy to tame dilemma. They keep people alive for longer and have bragging rights on some amazing cases headed for hospice and now in their third year of remission with pancreatic cancer and more.

Their starting cocktail, adapted as needed, is built on the idea that lower doses of compatible chemos allow more impact with less damage and less development of resistance. But like any toxic cocktail it can’t be used forever. They start with that cocktail, continue through a post remission period and then tinker from there. Actually, they tinker throughout. That is why the level of contact between the doctor and patient is so high; they really need to KNOW how we are doing. They order a more comprehensive set of labs than most of us are used to. They listen, they look, they wonder. Throughout the infusion, they roam the room on a regular basis. And their interaction with the PAs and nurses is collegial and constant. There is a lot of respect being shared. (It also seems like staff love their jobs.)

What you don’t find there is a moneyed spa. The people’s clinic is crammed elbow to elbow. The nurses had better be damn good because a lot of the triple checks of other places are replaced with high competency expected of the primary nurses. They deliver. Visitors are often made to wait elsewhere or left standing for hours on end. It is crowded when your policy is to accept everyone. My husband noted, “It’s a bit like getting your chemo in a bus station.”

The front desk is understaffed. They can require multiple checks on every request but you see how much they are handling and so you partner with greater grace than you might at an overstaffed office, where systems are ironically often too staffed to work well. Here the problem is the opposite.

The treatment is Medicare covered. They do use creative, proven approaches like iv vitamin c that is yet to be paid for by any standard insurer but they are quick to advise you of out of pocket costs before you incur them.

The location of the clinic is in the Bronx, which is easy to get to if you are comfortable with public transportation. NYC is a Mecca for being able to get everywhere on little money. The American Cancer Society offers free lodging at Hope Lodge in midtown Manhattan – and an express bus available 5 blocks away goes to two blocks from the clinic.

There is no question that travelling to treatment is a challenge. I traveled cross-country and hated it. And it is expensive! I transitioned to a clinic in N California for treatments – still a slog but staying in the same time zone helps. I continue to seek a local provider but as I document on my blog that is not easy to do in our current medical industrial climate.

If you want more options I recommend that you flag this clinic for a time in your treatment when you don’t like what your local team is offering up. I started at Bruckner Oncology when my cancer surged from no evidence of disease (NED) status to being measured 45 days later in inoperable inches. Now I transition to a Phase One clinical trial knowing that in my six months of care with Bruckner Oncology, they disappeared my high volume of cancer. I transition because my cancer is starting to break through the cocktail and my body seeks a chemo break. I have no doubt that I will return to Bruckner Oncology again in this cancer journey.

Current Update

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As these shorter, darker days hurtle us towards the close of 2014, it seems time to give an update. Just how am I staying alive these days? And what are my next tricks, if any?

Since late June of 2014 I have been doing several days of chemotherapy every other week. I am on a cocktail called the Bruckner Protocol that employs a varied mix of chemo drugs (often off label meaning FDA approved drugs but not approved for my form of cancer) in lower dose combinations that intend to intensify results without the toxicity. It has shown some success with hard to treat cancers. Using the protocol with recurrent ovarian cancers shows short-term results but there are challenges maintaining disease stability. It is no magic wand.

The doctors at the clinic are confidence inspiring in their relentless capacity to utilize the latest science to keep patients stable. Stability means a lot when you have untamed, terminal cancer. (Remission would mean more.) Drs Bruckner and Hirschfeld were pleased to hear that I not only had already started immunotherapy prior to arriving at their clinic but also that I was waitlisted for a next step immunological trial to open. I needed the Bruckner Protocol as a bridge to keep me alive. That was June 23rd.

I completed four treatments at the Bronx based clinic in NYC, a hefty commute, transitioning to Marin Specialty Care in early August. marinpagephoto2

I am just recovering from my seventh treatment in Marin bringing me to a total of eleven 31-hour cocktails.

Marin Specialty Caremarinphotonew3 became my new home when no Oregon facility was willing to treat me. (Thanks Oregon!) I had heard of Marin Specialty Care from the same woman who had initially presented the Bruckner Clinic as an option to track. Inbal was further down her relentless path with this disease when we met. With a young son to raise and a passion for life she was willing to try all options. Inbal blended zeal with research. She reported on the Bruckner Protocol with a journalist’s skill. For two years I saved her notes. When my cancer surge arrived in June I knew exactly where I was headed, and, in fact, flew off to the Bronx within a week.

Inbal lived in the woods near Oakland, CA. She chose Dr Jennifer Lucas as her oncologist, commuting the hour to Marin Specialty Care. Dr Lucas gave an initial no to Inbal when she requested the Bruckner Protocol but when asked to reconsider, Dr Lucas did, saying to me, “Who was I to say no. She and I both knew that I had no other way to keep her alive.” It is a rare oncologist that can set aside traditional doctrine and agree to a more daring protocol led by the patient. Dr Lucas watched the protocol both work and not work for Inbal. (Inbal died this September.) The clinic used the protocol on other hard to treat patients availing themselves of the free advise of Dr Hirschfeld in the Bronx. I arrived in August of 2014 as their first patient to fly in to their small 7-chair facility but patient number 9 on the Bruckner Protocol. Their entire team had expertise.

It has been an ambitious treatment period. Every two-week period I have three/four days in treatment/travel, recovery is a rather fierce three – five feeling lousy days (during which I moan and repeat, “oh my goodness” a lot) and then I have my rebuilding period in which I have daily health appointments and while my physical body is feeling better, my internal blood work is the weakest leaving me in a state of malaise. It is hard.  (14 days. 4 days treatment/travel, 5 days recovery, 5 days rebuilding.)

An additional challenge is maintaining a former life! My most vibrant health days are in Marin. There my body is in the best shape of the two-week cycle. Volunteers drive me to the airport, fly me by small plane to Marin, new volunteers scoop me up and bring me to my host family. I am fed and loved and dropped off by the 8 a.m. start of the chemotherapy drip. I am finally unplugged from my chemo pump 31 hours later to rush out the door to the driver who gets me to the Angel Flight, which brings me home. The love and dedication of these volunteers floors me. Their motivations fascinate me and, independently, they have become quite a social circle for my few good days each cycle. The fact that my new home is sunny and mild year round doesn’t hurt. My California days are nice.

My Oregon friends wonder though. I return sick and discharged and barely recover before departure. In Oregon, I am largely a missing person.

Where's Marcy?

Where’s Marcy?

All this effort initially showed great promise but back in September we got the first indication that the cancer is working around the therapy. Various tinkering is being tried, timed well as my body refuses to endure additional doses of some drugs. Oxaliplatin replaces Carboplatnum. Avistan is dosed when the stars or protein levels in the urine align. I get every infused anti-nausea med known and yet still, I endure the nausea, the nausea, and the endless nausea. Until one morning it is gone and much of my memory of the darker hours.

What is next? Just this week the University of Pennsylvania released the new T Cell Depletion Protocol that I have been on the waiting list for since June. The first woman will be accepted in January, with a new woman started each month with dose escalation every third patient. When will I be called? Will my weakened body still qualify? And can I keep my cancer calm until that moment?

I think I can. That’s what this whole six-month slog has been about. For now I count down to my next few spa dates in Marin, hoping my new friends are well and the sun will be out. That is far enough into the future for me.