Tag Archives: chemo cocktails

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.

Off to the Bronx Riviera

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Not every infusion center lends itself to the vacation metaphor. The Bruckner Clinic is a little on the gritty end. And life-saving experimental chemotherapy cocktails have their own emotional and physical challenges rarely woven into the vacation experience but, hey, they are just barriers. In hours I fly off with my beloved for 29-hour infusion number two at (ok, near) the Bronx Riviera. Not bad, eh?

We are, actually, excited. We may not get a chance to frolic on a beach but we will get an adventure, time in the big city and time together. IMG_8714For those of you who do get to vacation in the Bronx, send us a postcard from Orchard Beach; we are curious.

I have felt strong for almost a week, my belly feels significantly less full of surging cancer and I am ready for round two.

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My Own Steamroller

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I never hoped to own heavy equipment that would be my big brother’s dream. But here I am with my own steamroller. imgresIt has just spent four days rolling over me but last night it headed for the garage. Or somewhere. I didn’t look. I snuck out of bed and practiced being alive.

I have joined Team Bruckner and I am not sure it is the easiest team to play on. I trust they will adjust my dosing to accommodate the depth of my four days of post-first-infusion misery. But 29 hours of infusion will probably never be easy. I add in cross-country travels.

My husband just bought a ticket to accompany me when I fly back out next Monday. I don’t envy him the job of chaperoning – it’s half clean up crew and half security. My dose of steroids must be HIGH as the mere folding of a tee shirt can leave me howling in a rage. The dog and husband look fearful when I leave bed. This is not what I want for them or me, a puking madwoman.

Am I extending my life or insuring that all will be able to bear what comes next? This seeking out of the good death at the right time may be for wiser folk than I.

My infusion cocktail is made up of six therapeutic drugs and endless anti-nausea and steroidal perks. I start with the standard cocktail, as (such confidence!) my cancer gets tamed the dose will be tailored and lightened. At the close of day one infusions, a shoulder bag arrives filled with my to-go dose; it’s my overnight pal pumping away. It gives a new angle to purse snatching in the big city. This connects right to a needle in my chest. The cocktail is not specific to my brand of cancer but rather the drugs are selected for how they play off each other, minimizing the cancer’s ability to adapt and maximizing the impact of each drug.

Since I am coming off a year of immunotherapy (which they are a fan of), they hope that they can take the cancer-eating sharks imagesdelivered to my body this last year and wake them up by putting blood in the water aka decaying cancer.

Time to DEVOUR cancer.

Time to DEVOUR cancer.

Hmmm…. sounds good but it always sounds good and reasonable. Too bad I have learned that cancer is entirely unreasonable.

Team Bruckner is a place of hope, a last stop for most. I think it is my only chance of getting past my cancer’s outburst but I recognize it as a big gamble and the verdict will stay out for quite a bit longer. But hey, I have a steamroller I’d love to loan out.images