Skip to main content

Two years on Tagrisso

Yesterday (June 30) marked 2 years since I started Tagrisso targeted therapy. The 2-week wait between my biopsy and finding out the genetic testing results was excruciating. Until that point, we couldn't plan anything for the coming weeks or months because we didn't know if I would have to take hard path (chemo or radiation and all the side effects) or the easier path (targeted therapy). Although 2 weeks seemed like an eternity, it was a very quick turnaround. Genetic testing can take as long as 4 weeks. This was one of the main reasons we decided to stay in Germany for the remaining 6 weeks of our sabbatical rather than rushing back home: I could start treatment just 14 days after my biopsy!

When Dr. Reck, the German oncologist, told us that I was a candidate for targeted therapy, we were elated and flooded with relief. I felt like I had won the lottery -- which is a bizarre thing to say when you've been diagnosed with inoperable, incurable lung cancer. 

Tagrisso has been a miracle drug for me. It was approved by the FDA only in 2017. My lung function has improved dramatically since my diagnosis, when climbing just one flight of stairs left me out of breath. Today I forgot to bring my portable to the gym...and I was fine. 

Without insurance, Tagrisso would cost about $15,000 per month, or $500 per pill. I get Tagrisso for free because it's covered by insurance and a special program for extremely expensive medications. 

When Dr. Reck told us the good news, he gave me a prescription and 12 sample Tagrisso pills to tide me over. However, we planned to leave on a 2-week trip around Europe the next day, and finding a pharmacy that could fill the script for this rare, high-cost medicine the same day was nearly impossible. I called numerous pharmacies, to no avail. Miraculously, the University of Hamburg hospital pharmacy happened to have just the right amount of Tagrisso in stock, so I biked there to pick it up. And that's how my Tagrisso journey started. 

We have a digital photo frame at home with 12,373 photos on random shuffle. On Saturday, this photo appeared (me with my first Tagrisso pills on June 30, 2022). It's the first time I've seen this photo show up in our frame. 

Comments

  1. Rosita DerstineJuly 1, 2024 at 2:19 PM

    Congratulation on this milestone, Esther! Noticing the small miracles that life brings in the midst of sorrow is an exercise in gratitude and you are to be commended for this. Thanks for sharing

    ReplyDelete
  2. NickyJuly 1, 2024 at 3:17 PM

    What a milestone!!! The non-insured prices are astounding to me. I can't wrap my head around that. I'm so thankful that you were able to get what you need.
    Happy Canada Day 🇨🇦

    ReplyDelete
    Replies
    1. Esther PrinsJuly 3, 2024 at 10:18 AM

      Thank you, Rosita! Yes, it is nuts. We so desperately need single payer. So much money wasted. :(

      Delete
  3. NickyJuly 1, 2024 at 3:22 PM

    A picture of Leland and Lily with Joel and Noa on Canada Day just popped up in my Facebook memories!!

    ReplyDelete
  4. AlisaJuly 1, 2024 at 6:53 PM

    Praise God! What a journey. He is wonderful & we thank Him for the miracle of Tagrisso. I totally remember this picture. Oh how far the Lord has brought you. I remember the exact moment when I received your news. You have come so far dear friend by His grace.

    ReplyDelete
  5. AnnyceJuly 4, 2024 at 7:28 AM

    Wow! I'm so glad you've been the beneficiary of many miracles along the way, and that you've chosen to share them with us. 🙏

    ReplyDelete
    Replies
    1. Esther PrinsJuly 4, 2024 at 9:47 AM

      Thank you, Annyce. I've appreciated your support.

      Delete
  6. IreneJuly 11, 2024 at 6:37 AM

    Dear Esther, Praising God with you for this huge milestone and for the gift of Tagrisso! Amen to what Alisa said above. :) Thanking God for you, for your life and for your friendship.

    ReplyDelete
    Replies
    1. Esther PrinsAugust 17, 2024 at 1:57 PM

      Thank you, Irene! I'm so grateful for you, too.

      Delete

Post a Comment

Popular posts from this blog

Healthcare costs and insurance woes and victories

Those of you who have read this blog from the beginning may recall my posts about how inexpensive healthcare is in Germany compared to the US. I now have additional proof. I've been receiving "explanation of benefits" statements from Aetna detailing the cost of my hospital stays and other healthcare services since the end of July. Close your eyes and guess how much these amount to. Higher. No, higher. Still higher. Well over $200,000. Of that, I have paid maybe $100 plus some $20-30 co-pays for doctor's visits. Add to that my cancer and blood thinner medications, which would cost about $16,000 per month without insurance. I have no idea what people in my situation do if they are uninsured or under-insured. My recent interaction with one of my German doctors illustrates another stark difference. Before leaving Germany, I had asked my doctor what to do if I received bills from the LungenClinic after we had moved and closed our Deutsche Bank account (all bills in Germany...
15 comments
Read more

Indolent nodules

We met with my oncologist (Dr. Villaruz) and radiation oncologist (Dr. McCall) at UPMC in Pittsburgh yesterday en route from visiting family in Grand Rapids, MI. The main nodule we were watching grew by another millimeter or so. Dr. Villaruz described it as “indolent.” I asked what that meant and as she started to say “growing very slowly,” I recognized the word and blurted out “lazy!” I remarked I’d never heard indolent used in a medical context, and Dr. Villaruz said she’d never heard of it outside of medicine. So we both learned something. She and Dr. McCall said that there is no urgency, but that within the next 9-12 months, they would want to radiate the more clearly defined nodule and another one close to it. A third one looks like “ground glass,” a term for something that is hazy and not quite solid, but you can’t radiate something that is ill-defined and can’t be clearly imaged. It will be much easier to do radiation in the summer than during a busy semester or the winter b...
23 comments
Read more

Four years

Sunday, June 14 marked 4 years since I was diagnosed with lung cancer while living in Hamburg. Those of you who have followed my journey from the start know that my family and I went to hell and back several times during those first six months. Here I am before, during, and after. The photo below was the last taken before my life unraveled. I went on a photography outing with the American Women's Club of Hamburg. When my doctor said my x-ray showed "infiltration" and I should get a CT scan, I put it off for a day so I wouldn't miss this event. That's how unconcerned I was. The possibility of cancer never crossed my mind, despite my severe shortness of breath. This was my hospital room at the LungenClinic, where I learned my shocking diagnosis. I was sitting at the little table with the doctors and Leland was on Zoom. Leland had to travel to the hospital by train (an hour-plus trip) before we could process the news together, shellshocked. This photo shows me in the...
22 comments
Read more