Using Steroids

Families often assume steroids will shrink the tumor or stop it from growing. Rather, dexamethasone reduces the edema caused by inflammation within a confined brainstem location. Steroids may help your loved one have fewer, less pronounced symptoms, which can mean improved ability to see without double vision, swallow, straighten the smile and even walk with more balance - especially during and in the early months after radiation.

However, given the debilitating side effects of longer term, higher dose dexamethasone use, it is reasonable to request that your doctor create a plan to use steroids sparingly, when possible. Request options to wean from dexamethasone, to use pulse dose steroids when possible, use hydrocortisone or predisone or to use non-steroid options in place of or in supplement to steroids. You may also want to consider which symptoms are tolerable in order to preserve overall better qualify of life.

Dexamethasone, in particular, carries with it a heavy load of side effects, especially when used for a longer period of time. Potential side effects include rapid excessive weight gain, puffy swelling in the face, muscle weakness, difficulty sleeping, increased anger and frustration, acne, insatiable appetite often for salty foods which can in turn increase blood pressure, and reduced response to immunotherapies used in clinical trials.

Additionally, the change in physical features may cause your loved one to shy away from visits with peers, family celebrations, and even photographs. The use of steroids, can be a necessary evil requiring balance and vigilance in symptom management. My DIPG Navigator nurses can answer questions and offer options to consider with your doctor. Within the Tough2gether Online Community you will find frank discussions by parents on tips, tricks and tears related to steroid use. Join in and ask questions.

Doctors and families have been working together recently more than ever to create plans to reduce dexamethasone use. Hydrocortisone and Prednisone are being used when possible for less impact. With a doctor’s approval, Avastin can often reduce steroid dependence. It is also believed that cannabis, CBD, tumeric, boswellia and even antihistamines may calm the tumor area and reduce inflammation.

Your doctor, My DIPG Navigator, and even the Tough2gether Online Community will share ideas with you. Diligently consider the use of steroids, and ask your doctor whether reducing steroids early on could improve impact during progression.