Roller coaster report: My new treatment

Here we go again!

Here we go again!

I know it’s a trite analogy, but having stage IV cancer is really like being on a roller coaster. I used to brace myself for every drop, but lately I’ve learned to just hang on tight and go along for the ride. I can’t get off after the ride has started, so I have no choice than to trust I’ll get through it. Note: this analogy may not work for those of you who love roller coasters!

As those of you who follow me know, I was so excited my treatment (Ibrance and Femara) was FDA-approved, ending my monthly back and forth trips to Chicago for the trial. I was feeling great and looking forward to a hopefully long run on the duo. Then came my scan, a couple of weeks ago. Last week I finally got a hold of my consulting oncologist at Indiana University (IU) Simon Cancer Center who agreed it was progression.

Just as I was absorbing this, I got a text from my very dear friend Darlene that she was near the end of her life and asked if I could come down to Tampa to see her. I booked a flight and rushed down. What a kick in the gut that was! Darlene, whom I love dearly and who has helped so many other fellow survivors, was the person I usually went to when faced with a scan such as this. How could this be? Denial and disbelief and sorrow … yet I had to hold it together so I could be help to her and her family.

Then I came home on Monday, knowing I was facing yet another challenge. When you have stage IV cancer, it is hard not to picture yourself in the same situation. And my scary scan and Darlene’s pain and struggle reminded me how perilous my relatively good health can be. But the next day, I dove into action mode and searched through Bctrials.org to find clinical trials to present to my oncologist the next day at IU.

I was thankful that I’ve been keeping up with the research latest developments so that I had focus, and found five promising trials. I brought them yesterday to Dr. Miller. And even before I had a chance to bring them to her, she had a trial waiting for me! My last visit, I signed consent to sample my tumor for a trial for a Phase 2 study of MGAH22 by MacroGenics, a HER2 monoclonal antibody for patients who tested negative for HER2, but have a lower level (2+), Turns out I qualify.

The drug is similar to the wonder-drug Herceptin, which has saved and/or lengthened the lives of so many patients with HER2 positive breast cancer. At times, I remember wishing I was HER2 positive because of the great results Herceptin was showing. I start treatment in a couple of weeks. This time I’ll only have to travel two hours a month rather than the six hours it took to get to Chicago. In a weird way, I’m excited. It’s like the feeling I got as a kid when I was going up the hill on the roller coaster, anticipating the thrill of the drop.

Mike and I were talking about this over dinner after our appointment. For some reason, I don’t get as freaked out over treatment changes. We have been on this ride before. I am thankful God brought me this far and to a doctor I trust and like who actually seems to care. Let’s see where this ride takes u.

 

19 Comments

  1. tamilb
    Jun 30, 2015

    Thank you Tammy! I’ll keep on advocating and doing my thing. Just did a Blog Talk Radio Show for caregivers. We’re all in this together!

  2. tamilb
    Jun 30, 2015

    What a beautiful thing to say, Jackie! thanks so much.

  3. tamilb
    Jun 30, 2015

    Really appreciate it, Janet! I can feel the prayers lifting us.

  4. Tammy Hart
    Jun 30, 2015

    Tami, I’ve been catching up after digitally disconnecting for a bit and felt like I hopped on the roller coaster there, with you, reading your latest blogs.

    It’s so much easier to feel peaceful when you know in your heart that you are doing the absolute best you can for yourself. You keep advocating for you and, together, we’ll all keep advocating for each other.

    Love and support.

  5. Jackie D
    Jun 28, 2015

    Just catching up on your blog and, gosh, a lump in my throat the whole time. So many feelings, I feel exhausted for you just reading about these experiences. But it is awesome to see you living out your life’s purpose, being a mom and helping others.

    Also, love your new haircut and the makeup you had in Nashville!

  6. Janet
    Jun 27, 2015

    Tami – my love and prayers are with you and your family. You are so inspiring! Janet

  7. tamilb
    Jun 27, 2015

    Thank you Judy!

  8. Judy Fitzgerald
    Jun 27, 2015

    Tami, you continue to be a beacon of hope and inspiration to all of us. Your dedication to your family and fellow survivors is a blessing to us all. Sending you prayers and positive healing energy for your new treatment plan.

  9. tamilb
    Jun 26, 2015

    Thank you Donna for your beautiful words and prayers!

  10. tamilb
    Jun 26, 2015

    Here’s to unremarkable results or you, Teri! Let me know how it goes!

  11. tamilb
    Jun 26, 2015

    Thank you Jackie! xoxo

  12. Donna Williams
    Jun 26, 2015

    Tami,

    As a volunteer at a breast cancer survivorship organization, the emotions of this post really resonated with me. Many of the sisters I have made in the organization have and/or are going through much of the same, but regardless I never get used to hearing about it. I pray your roller coaster ride ends up being one in which the drop comes as a refreshing gust of wind on a hot summer day, and you are able to smile at the end of it.

    Donna Williams

  13. Terri Dilts
    Jun 25, 2015

    I guess after being FREAKED out a few times on the drops and surviving, they become less freaky. No more shock with results. Disappointment, yes, sighs of relief, yes. But I can no longer waste the energy in freaking out.

    So glad your doc had a trial for you. Good to have someone in your corner. Wishing you all the best!

    I’ve got a bone scan on the 7th, keeping my eyes open the whole time.

  14. jackie
    Jun 25, 2015

    Hi Tami,

    I have no words that could really convey what I am thinking and feeling for you. I so admire and respect you.

    Love,

    Jackie (we met at your book signing)

  15. tamilb
    Jun 25, 2015

    Prayers back to you Val! Thank you’

  16. tamilb
    Jun 25, 2015

    Thank you Ariane for your kind word and for the work you do for all of us. Research has come a long way and I’m hopeful for the future.

  17. Ariane
    Jun 25, 2015

    Tami,
    I like your analogy and attitude. This is good. Upsetting, but not daunting. I am here in Tampa quite upset myself about Darlene’s news. Even though I don’t personally know her, I know her story based on her FB site. Both of you are vital to so many of us out here who are trying to cope with the seemingly uncopeable states of impairment that we face with these diseases. I, myself, am a late stage BC HER2+ at Moffitt. I do Health Communication research in my PhD program here at USF, so I pay close attention to your blog, in particular, as I am primarily interested in how we are all talking about/living with disease experience in relation to new therapies and potential cures. It is difficult indeed sometimes to navigate my own lived experience (and all my fellows) while examining research about us. Which is why I am not happy to hear about Darlene and now your new challenge. However, I can envision you not being slowed down by this. I am happy you have this new trial. I am indeed agreeing with you in prayer for this, Darlene and for all of us!

  18. Val Hanline
    Jun 25, 2015

    Thanks Tami. I have stage IV HER2+. I have been on Herceptin since being diagnosed in 2011. I have just finished another series of radiation treatments for 2 new tumors. I am having a CT scan on the eighth to determine if they need to change my protocol. Your comparison to a roller coaster really makes me feel better about the situation. Thank you so much for sharing.Good luck and I will keep you in my prayers.

  19. Susan Zager
    Jun 25, 2015

    Tami I just think that there’s lots of uncertainty. I am glad you got to see Darlene. Both of you are so special.
    You have such an aura of zest for life. I hope you find the right trial for you as I feel bad when medications stop doing what they are supposed to do.
    I just want to send you lots of love, prayers and light as you continue to face lots of change.
    xoxo- Susan

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