Considerations for desmoid patients amid the coronavirus

Breelyn A. Wilky, MD, Discusses Considerations for Desmoid Tumor Patients During the COVID-19 Pandemic

During this unprecedented time, we reached out to DTRF Scientific Advisory Board member, Dr. Breelyn Wilky, who is on the frontlines at the University of Colorado Cancer Center. In the Q&A below, Dr. Wilky provides helpful insight and guidance specifically for desmoid tumor patients facing challenges to disease management and treatment during the pandemic.
We deeply appreciate Dr. Wilky’s time and support of our community, and send our gratitude to all health care workers during this challenging time.
Dr. Wilky: Hi everyone. As a doc on the front lines in Denver, I can say that it sure is a scary time right now for all of us, with a tremendous amount of uncertainty. I can only imagine how much MORE uncertainty there is as a patient with a desmoid tumor. Whether you are on treatment or not, or are considering whether or not to start a new treatment or have a procedure, there are many questions that come up regarding how best to protect yourself and your loved ones from coronavirus (COVID-19). Today I’ll try to answer a couple questions as best as I can with the information that we have.

Q: My hospital is cancelling treatments, including “elective” surgeries, scans, and appointments. What do I do if my treatment is being cancelled?

Dr. Wilky: This is a tough situation. The reason that hospitals are cancelling or delaying so many procedures and appointments is that we are trying to minimize the numbers of patients who have to be in the hospital or clinic. Hospitals are germ factories as you know, and patients who are sick with COVID-19 are going to be in these hospitals, potentially more and more of them. This is not only for your own safety, in keeping with “social distancing,” but for the safety of other patients, including critically ill patients who have no choice but to be in the hospital. We are also trying to open up as many beds as possible for the surge of patients with coronavirus who could overwhelm our hospitals and health care teams. So we must decide who absolutely must have treatment now, and make sure that that need outweighs the risk of either getting or spreading coronavirus or taking up a bed from someone who might become sick and need it in the future.
So we must decide who absolutely must have treatment now, and make sure that that need outweighs the risk of either getting or spreading coronavirus or taking up a bed from someone who might become sick and need it in the future. So the good news is that in general, most desmoid patients are relatively stable. Unlike aggressive cancers that can metastasize (spread) quickly over days to weeks, or that can ultimately cause death, the vast majority of desmoid tumors are not going to transform to a life-threatening situation over a few weeks or even a few months. Obviously, there are some desmoid tumors, such as rapidly growing abdominal desmoids involving the bowel, that could be life-threatening or could cause major complications, and these may need to be considered differently. Only you and your doctor understand your desmoid well enough to determine how critical your treatment and follow up are at this particular time. But in general, I would say that postponing scans, doctor’s visits, surgeries, and even treatment are safe and advisable for most desmoid patients unless you are having overwhelming symptoms right now. And I would be proactive even if your healthcare team is not cancelling appointments to allow you to self-isolate in accordance with the national coronavirus guidelines. Like all of us, staying home and away from other people is the best thing we can do right now to slow the spread of COVID-19.

Q: I have a desmoid tumor and I am concerned about the state of my immune system. Am I at high risk for coronavirus infection? OR if I am on treatment right now with chemotherapy – does this make me high risk?

Dr. Wilky: Our understanding of who exactly is high risk or not changes quickly, as do the guidelines. In general, the people who have gotten the sickest from coronavirus have been older people (although the exact age is not clear) or those with “underlying medical conditions” or a “suppressed immune system.” What does that even mean? What is clear is that anyone can get the virus, carry it, and spread it to someone else whether they are high risk or not. Additionally, even younger healthy people, including healthcare workers, have gotten very sick from complications. So the most important thing is that we all act like we are high risk, or are carrying the virus. This means social distancing, with frequent handwashing, not sneezing or coughing on people, avoiding sick people at all costs, and not going into crowded areas. For any of you who are on chemotherapy, these rules will not be strange to you! You’ve been well-trained about this from the beginning of treatment!
With full-strength chemotherapy, like doxorubicin/dacarbazine or methotrexate/vinblastine, your immune system is definitely compromised on treatment and contracting the coronavirus could be very dangerous just like if you caught the flu, or any bacterial infection. For other desmoid treatments, like liposomal doxorubicin (Doxil), sorafenib (Nexavar), imatinib (Gleevec), or the gamma secretase inhibitor trial (Nirogacestat), we don’t know as much about how your immune system may be affected. Number-wise, most people’s immune systems look ok on these treatments – meaning you have normal numbers of white blood cells that fight infection. But if you wonder about how the whole immune system is functioning, could there be “quality” not “quantity” issues that make you at more risk if encountering an infection? I think it’s possible and we don’t know for sure. What I’m telling people is that if you are on treatment for your desmoid (or cancer), that is probably the more important factor right now, because while you can literally “hide” from the coronavirus by following CDC guidelines, you cannot hide from your desmoid or cancer. But your exact risk-benefit balance needs to be determined by your doctor who is most familiar with your other medical conditions and your desmoid tumor behavior.
That being said, if you have NOT yet started treatment, and it is not a critical situation, I might consider whether holding off on treatment makes sense. Not just because of any theoretical impact to your immune system, but because you will need to have more doctor’s visits, lab checks, or could have new side effects that need to be managed. This may force you to need to come in for treatment, which as we already discussed in question 1, should be avoided. So, unless your desmoid needs to be treated NOW, most patients are better off delaying starting therapy in my opinion. I (along with many other desmoid experts) also have strong feelings about how surgery for desmoid tumors is often NOT the only or the best option, so if you are considering a big surgery, you may want to consider a second opinion (you can do virtual!) to make sure this is the best treatment for you. If you’ve already had surgery, your risk during recovery is a bit less concerning, except that again we want to avoid complications that bring you into the hospital. So, you should still be taking the same precautions that are being recommended for everyone.
For the best guidelines, visit the official CDC website
Stay safe everyone!
Breelyn A. Wilky, MD
Dr. Breelyn A. Wilky, MD is a sarcoma medical oncologist and clinical trialist with research interests in immunotherapy, targeted therapy and precision medicine, and early phase drug development. She has recently joined the University of Colorado School of Medicine as Associate Professor, where she is a member of the Sarcoma and Phase I Programs, expanding the portfolio of investigator-initiated clinical trials, and helping to advance immunotherapy and adoptive cellular therapy for solid tumors. As the Director of Sarcoma Translational Research, her laboratory initiatives will study tumor and immune microenvironment in sarcomas, focusing on angiogenesis as a potential resistance mechanism to checkpoint inhibitors. She is particularly interested in desmoid fibromatosis, and was awarded a DTRF research grant in 2016 to study the association of beta catenin mutation status as a predictor for chemotherapy responses.