Patient Story: Shannon
My Acromegaly Treatment Has Changed Its Shape
“I wanted to take part almost as soon as I heard about the study. I was anxious to stop getting painful injections and to be relieved of the inconvenience of the monthly visits to my doctor for injections.”
Before acromegaly, Shannon was the life of the party, spending time with her friends whenever she could and building a life for herself. After her diagnosis, she experienced disruptions in her life due to the inconvenience of going to her doctor's office for injections; that is until she discovered a clinical trial for a new oral treatment for acromegaly.
“You know that old saying about the shortest distance between two places is a straight line? Well, my life travels were not the shortest distance or the straightest path.”
Before acromegaly, Shannon was the life of the party, spending time with her friends whenever she could and building a life for herself. When she experienced her first symptoms of weight gain and foot size increase, she didn’t think too much of it. What she didn’t know at the time was that these symptoms were hinting at something bigger.
Shannon realized that something was seriously wrong when she began experiencing vision loss. When she noticed that signs on the highway started missing words, Shannon sought out medical help. She describes her road to a diagnosis as a series of twists and turns as she bounced from doctor to doctor trying to find out what was causing her symptoms.
After seeing three specialists, Shannon finally learned that she had a brain tumor and would require surgery. It took two surgeries to remove the tumor; however, the headaches, pain, and lack of energy persisted. Again, Shannon bounced between specialists trying to diagnose this condition, and finally, three years after her first surgery, Shannon was diagnosed with acromegaly.
Though Shannon was relieved to have a diagnosis and a treatment for her symptoms, SSA injections proved to be inconvenient and painful. She would have to take time off from work in order to receive treatment, and often couldn’t plan to do anything else around these times because she never knew how long scheduling and traveling to and from the appointments would last.
“I was anxious to stop getting painful injections and to be relieved of the inconvenience of the monthly visits to my doctor for injections.”
With a diagnosis in hand, Shannon got involved in the acromegaly community where she could hear from others about their journey with acromegaly. This is where she learned about Chiasma’s clinical trial for MYCAPSSA® (octreotide) delayed-release oral capsules, the first and only oral somatostatin analogue (SSA) capsule for appropriate patients with acromegaly.
Shannon took matters into her own hands and contacted a local doctor who was participating in the study. They brought her in to be screened, and after explaining the details about the trial and potential side effects, including headache, joint pain, nausea, weakness, diarrhea, and sweating a lot, Shannon was accepted into the trial.
Adding MYCAPPSA to her routine was seamless for Shannon – a twice daily pill was easy to add to her other daily medications. While on MYCAPSSA, the blood test used to monitor acromegaly showed Shannon’s IGF-1 levels stayed consistent in the low 100s. This consistency, combined with not having to make regular monthly injection appointments, helped Shannon to effectively and more comfortably manage her acromegaly.
“I’m pleased to say that MYCAPSSA has lived up to and exceeded my expectations.”
Shannon’s journey with acromegaly was not one she would describe as being a short or direct line from symptoms to diagnosis to treatment. This long and winding path taught her that persistence is key. She was proud of herself for seeking an option that, for her, was more convenient and less painful than injections.
“I hope my story encourages others to also be persistent.”
This is Shannon’s personal experience living with and managing acromegaly. Other people’s experiences may differ. For more information about MYCAPSSA, visit www.MYCAPSSA.com.
INDICATION AND IMPORTANT SAFETY INFORMATION
What is MYCAPSSA (octreotide) for?
MYCAPSSA is an oral prescription medicine used in the long-term maintenance treatment of acromegaly in people for whom initial treatment with octreotide or lanreotide has been effective and tolerated.
If these treatments are effective and your body is tolerating it, you may be eligible to take MYCAPSSA instead of the injections. Ask your doctor if this oral treatment is appropriate for you.
What is the most important safety information I should know?
MYCAPSSA can cause problems with the gallbladder. Tell your healthcare provider if you have any of these symptoms: sudden pain in your upper right stomach (abdomen) or right shoulder or between your shoulder blades; yellowing of your skin or the whites of your eyes; fever with chills; or nausea.
MYCAPSSA may affect your blood sugar, thyroid hormone, or vitamin B12 levels. Tell your healthcare provider if you have any problems or conditions related to these. Your healthcare provider may monitor these levels during your treatment with MYCAPSSA.
Tell your healthcare provider if you have an irregular heartbeat.
Who should not use MYCAPSSA?
MYCAPSSA can cause a serious allergic reaction including anaphylactic shock. Stop taking MYCAPSSA right away and get emergency help if you have any of these symptoms: swelling of your tongue, throat, lips, eyes or face; trouble swallowing or breathing; severe itching of the skin with rash or raised bumps; feeling faint; chest pain; or rapid heartbeat.
Do not use MYCAPSSA if you are allergic to octreotide or any other ingredients in MYCAPSSA. If you need to know the ingredients, ask your healthcare provider or pharmacist.
If you have certain other medical conditions, you should use MYCAPSSA with caution. Tell your healthcare provider about all your medical conditions, especially the following: pregnancy or breastfeeding; liver disease; kidney disease; or difficulty in emptying bladder completely.
Tell your healthcare provider about all the medicines you take. MYCAPSSA may affect the way other medicines work, and other medicines may affect how MYCAPSSA works.
What are the possible side effects of MYCAPSSA?
The most common side effects are headache, joint pain, nausea, weakness, diarrhea, and sweating a lot.
Talk to your healthcare provider if you have any side effect that bothers you or that does not go away. You may report side effects to the FDA at 1-800-FDA-1088.
Keep MYCAPSSA and all medicines out of the reach of children.
How should I take MYCAPSSA?
Do not take MYCAPSSA with food. MYCAPSSA should be taken with a glass of water on an empty stomach. Take MYCAPSSA at least 1 hour before a meal or at least 2 hours after a meal (for example, you could take your morning dose 1 hour before breakfast and your evening dose at bedtime).
©2020 Chiasma, Inc. All rights reserved. MYCAPSSA and Chiasma are registered trademarks of Chiasma, Inc. PM-MC-US-0145 08/2020