On January 24, the first GDOL (GIST Days of Learning) of 2015 brought together nearly fifty GIST patients, caregivers, family members and volunteers at the University of California San Diego Medical Center. A recap of the event can be found here.
As part of our follow up, our Science and Patient Registry team have answered questions which were submitted by attendees at the event.
1. Is it OK to get a shingles vaccine if I’m on Gleevec?
There are mixed opinions about this since the safety profile of live vaccines with oral chemotherapy has not been established. All the current contraindications in place are for traditional chemotherapy so a patient should weigh the risks versus the benefits. The risk of catching the virus is likely, considering the most common age group GIST patients fall into and the weakened immune system chemotherapeutic drugs cause, whether oral or traditional. The shingles virus has the potential to cause debilitating injuries which may need a lifetime of anti-viral treatment. Before getting this vaccine it is important to make sure your white blood cell count is at an appropriate level, that you are not immune-compromised, and not undertaking any medication regimen of high-dose corticosteroids. Your overall state of health should be the primary consideration. Your doctor is the best person to consult with on this, based on your medical history.
2. Will insurance cover long-term use of Gleevec?
This is based on your coverage plan and federal and state healthcare policies. Consult with your own plan for details.
3. Do GIST tumors always recur? Are there cases where they do not?
There are cases where tumors do not recur after surgery. Risk of recurrence can be somewhat predicted based on a number of factors including tumor size, tumor location, mitotic rate and whether the tumor burst during surgery. Note that these prediction percentages only apply to patients with a single tumor (no metastases) who have not taken Gleevec neoadjuvantly (prior to surgery). For more information, see our website: https://liferaftgroup.org/risk-of-recurrence/
4. What is the status of the drug ponatinib?
The ponatinib (Iclusig) trial is an ongoing Phase II trial. It is not currently recruiting new patients. For more information on this specific trial, please click on the following link to learn more about the trial on ClinicalTrials.gov.
5. I don’t see any exon number listed in my pathology report. How is that determined and does it require live tissue?
Mutational screening is a separate test from histo-pathology. Only a few specialized laboratories in the US are doing this. A formalin fixed paraffin embedded tissue removed at surgery is required to perform mutational screening. The LRG can help you with obtaining these tests. See our website for more information.
6. How dangerous is the radiation from CT scans for long-term GIST patients? How often should a patient with stable but metastatic disease do a CT scan?
A new abstract from Heikki Joensuu on optimizing the timing of CT scans from adjuvant Gleevec suggests that there be less scans DURING adjuvant treatment, and MORE scans (3 months apart) in the two years AFTER adjuvant treatment due to the fact that recurrences are most likely to happen when adjuvant treatment is completed. By following this schedule, scans could be reduced by approximately 30 percent in the first six years of treatment. http://www.ncbi.nlm.nih.gov/pubmed/24475826
7. How long does it take for a tumor to grow?
There is no measurable time. Each tumor and each patient is unique.
8. How important is nutrition and exercise in the prevention of recurrence?
It will not prevent recurrence, but it will keep you in better physical stead to cope with side effects of treatment and surgery if it happens.
9. How long might someone have GIST before they present with symptoms? Are there any early screening techniques available?
There are no early screening techniques out there. Paying attention to your body is the best gauge and early warning system you have when something is wrong. Acting on it early will give you the chance to start treating or managing it earlier.
10. If someone with GIST has children, what is the likelihood that their child will have GIST?
Your doctor should be the one to determine an appropriate screening for germ-line alteration. A consult with a genetic counselor may help if the test proves familial GIST. Familial GIST is extremely rare. More information can be found here.
11. Is a GIST tumor ever considered benign?
Some tumors can be removed by surgery, and pose little risk of coming back. This type of tumor is called a benign tumor. However, other tumors may have a higher risk of coming back. These tumors are called malignant tumors. If a tumor returns after surgery, it is called a recurrence. Many GIST experts consider all GISTs to have some malignant potential. Others consider most very small GISTs (less than 2 cm in size) with a low mitotic rate to be benign.
Here’s a link to our webpage on recurrence.
A photo gallery of the San Diego event can be accessed here.