Washout: the reality

Getting into a clinical trial is multi step process. First you have to identify an appropriate trial, but I am fortunate to have an oncologist like Alice Shaw, who does that work for me.

After signing the consent form, the real pins and needles part starts, as I now must qualify for the trial.

I’m a match on paper for phase I of DS-1062 but before being formally accepted in the trial there are numerous hoops I must jump through.

On Tuesday of this past week I had an EKG, labs, CT scan of head, chest and abdomen, and an echocardiogram. All in one day. All billed to my insurance. My brother John and sister Bink were flying in from Colorado for a quick visit and they met me at the hospital. As I had another exam the following morning (eyes), we decided to spend the night in Boston. Peter joined us for dinner and one heck of a festive evening.

The following morning I woke up at exactly the time I was supposed to begin my eye exam. Oy vey, someone (me) thought they were setting their alarm but did not. I made some quick phone calls, hopped in the shower, and ubered over. Crisis averted.

However I got a call from one of the research nurses as I was getting ready–my liver enzymes were still slightly elevated and unless they came down, I would not qualify for the trial.

Damn. I was advised to hydrate heavily and more labs were scheduled for this morning. Unfortunately, I am still above normal (likely as a side effect of the pemetrexed) and so on Monday morning I need to get to the hospital at 7 am for IV fluids. Labs will then be drawn again and if my ALT and AST are within range, I will go ahead with the lung biopsy and have my first infusion for the trial on Tuesday. If not, everything will be pushed back a week.

In the meantime I am washing out of lorlatinib. Lots going on chemically in my body right now.

The trial requires a lot of premedication–for nausea, mouth sores and dry eyes. Yesterday I went to pick up my scrips but initially left without them.

As of January one I no longer have a steady source of income as my alimony has ended. This means I qualify for Mass Health, which is a good thing as medical bills have been a huge financial burden. When I went through the drive through at the pharmacy, I was told I needed to come inside to update my insurance information. I did, and then had to stand in yet another line to pick up my meds. However, the cashier told me that it indicated that my scrips needed to be billed to something called Argus before they could go through Mass Health. If I wanted them then I would need to pay cash (five different scrips). I calmly explained to her that I could not afford to do that and that if I didn’t have my prep medications, I couldn’t start the trial on Tuesday. She told me there was nothing she could do and that I would need to call Mass Health.

My brother and sister were waiting outside in the car and I was in tears when I joined them. We drove to the grocery store and while they shopped I waited on hold for customer service at Mass Health. When I finally got through I was told I needed to go back to the pharmacy for a list of my meds and that if I called back in the morning, an investigation into why Mass Health wasn’t showing up as my primary carrier would open. An investigation that could take days.

Now I was really crying. We drove back to the pharmacy, my siblings went inside to get the list but they wouldn’t give it to them. My brother said ‘She’s crying in the car, do you want to go talk to her?’ I was so humiliated by this point but I went back in with my ID. And then we had to stand in another line, and my sister paid cash for my drugs. There is very little humanity in this process at times.

I dropped John and Bink off at the airport this morning. I have spent most of the day close to tears, between the financial stress and anxiety as to whether or not I will qualify for the trial.

This girl is freaking tough but yesterday was the straw that almost broke the camel’s back. I get so tired of complications. Having a limited income sucks. Having terminal cancer sucks. Having some support and assistance—my siblings—was phenomenal. My friend Diane is now across the street and will drive me to my biopsy on Monday. Melinda has leapt into action trying to straighten out the Mass Health mess.

I’m chugging water and willing my liver enzymes down, while wistfully thinking about warm beaches and cold drinks garnished with paper umbrellas.

Dream on.

11 responses to “Washout: the reality

  1. Oh man 😦
    You already know this because you live with it..but I am always amazed by how messed up health care and insurance is over there 😦

    Wishing you all the best with everything and specifically that the inquiry is quick and you get on the trial ASAP

  2. Oh, Linnea! This makes me so mad. And sad for you. And crazy, like I’m not already with this disease. I am glad you have siblings and friends who are stepping in. I am praying those enzyme levels retreat FAST so you can start on the clinical. Wish all the love all of us have for you could translate into $$. You’d be a gazillionaire. Keep pushing, Sister!❤️

  3. Linnea, I am endlessly disgusted by these absurd hoops you are constantly asked to jump through!!! You’ll get over them as you always do, yes? We need a studio day!!! When you’re up to it ❤️✊🏼

  4. I am so sorry Linnea. Sadly this is the same story for far too many.

    We work on these processes every day. The systems are failing us. Some say the health system is broken. I say ‘When did it actually work’? Especially in joining a clinical trial. They should be taking care of all of these things for patients.

    Please don’t hesitate to reach out if I can be of help in any way. Hydrate, rest this weekend and work on getting your body ‘trial’ ready.

    Bless you….

  5. Dear Linnea- I’m so sorry. I can relate and empathize with your frustration and anxiety. At times it’s just a fuckin roller coaster ride. As Bonnie so eloquently stated” Sadly this is the same story for far too many” and “They should be taking care of us”. You are truly blessed to have such supportive, loving family and friends!!!! I hope and pray that all goes smoothly on Monday!!!! Shortly after I was diagnosed my son sent me the Harvard Review with your story and picture on the cover. He thought it would inspire and encourage me to fight even harder. As usual he was right!!!! To this day I keep you by my bedside. I am now five and a half years out and you will always be an inspiration to me and countless others, my friend!!!! Continued healing always!!!! Please take good care and you and never forget that you are our Ultimate Warrior!!!! Love & Blessings, Susan

  6. FYI….on the off chance this helps….my liver enzymes were elevated last check and my doctor told me that can happen if you eat something sugary the night before the draw. In the meantime, I am praying for you!

  7. Linnea Schordine

    I am so sorry you have to deal with insurance bs along with everything else. Milk thistle may help your liver enzymes go down. Thinking of you at this difficult time and willing positive thoughts your way.

    LinneaNY

  8. Oh my gosh this is appalling. Period. You should not have to deal with this on top of everything else. As always, I wish we were closer. May those enzymes dive and you start the trial asap. We will be thinking of you, also as always. Much, much love. As always.

  9. Co-feeling with you Linnea! With all my heart.

  10. Dear one I do not understand. You’re writing about why you want to live is so eloquent but what you write here, I question, is it living? Is it better, truly better to get the meds you need and the good good loved ones you want and go to warm beaches and have cold drinks garnished with paper umbrellas And give great good gratitude to your do your body and determine your good ending? With great love.

  11. I hope hope hope you got your lung biopsy today!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s