Treatment Update: The first day of chemo was an exhausting experience. Beyond the anxiety of the first treatment, the appointment being scheduled for 7 am, and the anxiety for the future- there was a change to my treatment plan. Dr. Schuster met with me on the infusion floor to share the news that due to some concerns with my pulmonary test (lungs) and he did not want me receiving bleomycin chemo because one rare and severe side effect is permanent lung damage/impairment. In the past, patients would receive three chemo drugs (AVD) and usually still be cured with twelve treatments. However, two weeks earlier at a cancer conference, a new study was released on a two-year trial on Hodgkin’s patients. Patients would receive treatment A+AVD switching bleomycin for brentuximab vedotin. This trial was released at almost the exact time of my initial diagnosis. Amongst the whirlwind of information my sleepy brain was trying to process, Dr. Schuster informed me I would only be receiving AVD for this infusion and he would confer with insurance to try and start the brentuximad vedotin in two weeks at my next infusion. Confused, my brain blocked any processing.
The following infusion, I was good to start A+AVD. For a few weeks my explanation and reference to my treatment was ABVD without the original B that was switched for a new B. With my greatest effort, I have tried to remember the medications, medical terms, and my full diagnosis but it is a lot and memorization of names and pronunciation are easily mixed and jumbled in my mind.
Last night, I decided I was going to understand exactly what my new treatment plan was and what the side effects for brentuximad vedotin are. I embraced my nerdy-researcher self as I scrolled through medical case studies, chemical formulas for my chemos, and results. It is not the most uplifting research topic and I am still definitely not destined for a career in the medical profession, but it was fascinating. Amongst all the data, I did find the study Schuster was referencing has a higher cure/survival rate as well as less toxicity. I am extremely happy to be in Fort Collins and feel fortunate to have my doctor who is attentive to these studies and aware of my condition to make thoughtful decisions in my best interest. There is something to be said about trust in these situations.
http://www.nejm.org/doi/full/10.1056/NEJMoa1708984
For those who want to read the abstract and results of the study I referenced.
I’m so glad you are in good hands!
The important thing is that you just hang in there. Remember that you are still at the beginning of this process, so more challenges are ahead. It is good to learn everything you can about the treatments, but also remember that your doctors and other health care providers have many years of experience and kind of know what they are doing. Stay strong and know that you are deeply loved.
Thinking of you. You are so brave and positive. Keep writing. I know it helped me.
It’s good that you are staying informed about your treatment to better understand all that is happening with your body. Your positive attitude will help you in your recovery. We are thinking of you and send our love.
You nerd (thinking you’re in good company)!
Dr. Schuster is also my doctor. I have confidence in his abilities. Keep writing. It is therapeutic.
We have a very similar story, though it took a few months longer for my providers to find the hodgkin’s mass in my chest. I was diagnosed on Memorial Day and just finished cycle 2 of AAVD (also because of concerns of lung function). Thank you for sharing your story, it helps to see I’m not alone!