Overall survival in GIST patients has improved dramatically over the years. In 2019, the median Overall Survival (OS) is over 12 years when all Life Raft Group registry patients are combined. About 80% of GIST patients are diagnosed with a single tumor and about 20% are metastatic at the time of diagnosis.1
The high percentage of patients diagnosed with a single tumor and the effectiveness of adjuvant treatment for these patients contributes significantly to the long overall survival. GIST patients require a long-term strategy for the best results. Alternate stats: The 5 year OS is 82% and the 10 year OS is 61%. Treatment is usually long-term. Long-term treatment can be challenging for the patient. There are ways to address these challenges:
Dose escalation is an under-utilized tool in GIST treatment. For most drugs and most patients, starting at half of the standard dose and taking a few weeks to ramp up dosage is more effective. Starting at full-dose (especially with Stivarga) too often results in a dose-reduction or even a dose interruption. It’s also harder on the patient. It’s usually better to give the body a chance to ease into the drug and get used to side effects. This often results in the ability of a patient to get to a stable normal dose quicker.
Side Effect Management
Drugs don’t work in people that don’t take them. Effective side effect management is one of the most important ways to improve the patient’s quality of life and allow for optimum compliance (ability to take the full prescribed dose on a regular basis).
Aging with GIST
The median age of GIST patients in the LRG registry is 60 years old (somewhat younger than a population-based study group). This means that GIST patients are not only dealing with GIST, but most of them are dealing with aging as well. With aging there are hormonal shifts, we are often less active, weight-gain is often an issue, loss of bone density, loss of muscle mass, more chances of cardiovascular disease, aches and pains from joints, loss of flexibility and mobility, increased risk of diabetes, and the list goes on.
With all of the things that come along with aging, it’s often hard to tell what’s related to aging, what’s related to GIST and what’s related to GIST treatment. An all too common occurrence is to blame GIST treatment for things that are probably related to aging.
In addition to the normal stress that occurs in day-to-day living and getting older, GIST patients and their families and caregivers have tremendous additional stress caused by GIST. Given the positive effects of exercise (or at least activity!) on general health, to combat aging and to reduce stress, it would be at the top of the list of ways to reduce stress. In addition, eating a well-balanced healthy diet can help to balance physiological stress. Pursuing integrative techniques such as meditation, yoga or pursuing activities that are pleasurable can increase serotonin levels and reduce stress hormones such as cortisol.
What’s the old saying? Use it or lose it! Not only is this important for normal health, to reduce stress and to combat aging, it also can be a great way to combat fatigue (although adequate rest including adequate sleep is also important to for both fatigue and stress).Preventative maintenance isn’t less important, it’s
Cancer patients sometimes have a tendency to put off normal “maintenance” health issues because they are “dealing with something more urgent (cancer)”. There is no doubt that the TKI’s used to treat GIST greatly increase survival; the benefits far exceed the risk for most patients. However, the drugs do have unwanted side effects. In many cases, they can act almost as a “co-factor”. Normal aging predisposes you to certain conditions, for example, a decrease in bone density.
These drugs can sometimes “team up” with normal aging to increase the chances or magnitude of some of these normal aging processes. For our bone density example, imatinib can affect bone remodeling; causing an increase in bone density in some parts of the body and a decrease in others (most notably a decreased density in the neck of the femur). The result might be things like an increased risk of hip fractures.
Preventative Maintenance Not to Ignore (partial list!)
1. Dental checkups
2. Monitor for and correct high blood pressure
3. Screening for other cancers (mammograms, colonoscopies, dermatological exams, etc).
4. Monitor kidney health and practice preventative measures (treat high- blood pressure, limit salt intake, hydrate, etc)
5. If you have cardiovascular risk factors, consider adding a cardiologist to care for your heart (treat your cancer while caring for the heart)
6. Monitor bone density
Form a Medical Team
Local oncologists, nurses, and support staff will most likely be the core of your medical team. However, overall strategy is best accomplished with the help and direction of a GIST expert team, usually led by an oncologist, but including others such as expert surgeons and pathologists.
Dermatologist – Experts at dealing with skin issues such as rash and hand and foot syndrome
Endocrinologist – Experts at dealing with glands and the hormones they make, electrolyte imbalances, bone metabolism, etc.
Nutritionist – While nutrition shouldn’t be used to treat cancer, it should be used to optimize the body and to correct deficiencies that can be related to treatments or to GIST itself. While the advice to “get your nutrition from what you eat” may be great, it’s often hard to do. In addition, treatment can often cause additional abnormalities that go beyond normal aging. Note that there may be some overlap between things a nutritionist and an endocrinologist can help with.
Cardiologist – While the typical GIST patient may not need a cardiologist on their team, anyone with additional risk factors may need one. In addition, for anyone starting Sutent, their oncologist should order cardiac monitoring such as an echocardiogram or a MUGA scan. If those tests find any abnormalities, then it’s time to get a cardiologist involved in the treatment plan (See Sutent Cardiotoxicity – better monitoring . . .
Learn to Become an Advocate
We believe that patients that have a voice in their own medical care do better. Learn to become an advocate for your own health. If you have a partner or caregiver, so much the better! Let them help! It might help not only you, but them as well.
1If we removed some of the long-term survivors diagnosed prior to the introduction of imatinib (due to survivor’s bias), it’s about a year less, but still quite impressive. Remember, the median is just the person in the middle; half of all patients live longer than this, some much longer! Note: LRG patient registry members join the registry voluntarily (they are self-referred). Patients at low risk have less incentive to join the registry, so as a group, the registry has both more high-risk as well as more patients that are metastatic at diagnosis compared to the entire world-wide GIST population. As a result, the overall survival of ALL GIST patients world-wide (including the low-risk patients) is probably even greater than the numbers