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Published on November 30, 2020
How to Manage AML Side Effects and Access Support
Living with acute myeloid leukemia (AML) involves side effects from both the cancer and the treatment a patient receives. Communicating with your medical team can give you strategies for relief and support. Hear Katie Herricks, Nurse Practitioner at Robert H. Lurie Comprehensive Cancer Center of Northwestern University, discuss the importance of alerting your treatment team about all side effects and concerns.
Additionally, this program answers many questions asked by AML patients. Can I go to the dentist? What support services are available to me to help manage anxiety and stress? What is a good diet for an AML patient during treatment?
This program is sponsored by AbbVie Inc. and Genentech Inc. These organizations have no editorial control. It is produced by Patient Power, and Patient Power is solely responsible for program content.
Transcript | AML Treatment 101: Side Effects and Patient Support Services
What Are the Most Common Side Effects AML Treatment?
Katie Herricks: Let's talk about first – low blood counts I think is one of the most common side effects occurring with AML treatment in general. And so, the blood counts can be decreased in your white blood cell count, a decrease in the hemoglobin, decrease in the platelets, and also the neutrophil count. When your white blood cell count is low, you're at risk for infection. When the hemoglobin is low, you can oftentimes need red cell transfusions. And when that's low, you might feel short of breath, pain in your chest, fatigued. You might also have headaches and sometimes dizziness. Also, with a platelet count being low, you're at risk for bleeding. And so, when your platelet count gets really low, your medical team will give you a transfusion. But obviously, in all those situations, you want to do things to avoid and make those things worse.
So, for instance, when the hemoglobin is low, we always suggest to patients, right, not to overdo it. So, we want you to stay active and we want you to continue to do the things that you're able to do, but to not expect yourself to be able to do it at the same kind of gusto as you were able to do it before. And so, to give yourself a break, and if you need to take a rest, it's okay. With your platelet count being low and being at risk for bleeding, we would suggest making sure to avoid any medications that can increase your risk of bleeding. So, avoid any NSAID medications like Aspirin or Ibuprofen, Motrin and Aleve. If you're on a blood thinning medication for something we would suggest that you consult with your medical team and discuss when you should hold those medications.
Also, to be very careful with like blowing your nose and brushing your teeth as there's an increased risk of bleeding. So, if you do have a really dry nose, we suggest to patients to use a saline nasal spray. Also with brushing your teeth, we suggest to use a soft bristled toothbrush. And then with the neutrophil count being low, you are at higher risk for infections. So oftentimes your medical team will put you on medications to try to prevent infections such as viral infections, fungal infections. And then when the neutrophil count is low, they'll have you on an antibiotic to prevent bacterial infections.
During this time, we would suggest that you be more careful and kind of, along with what everybody's doing with COVID now, to make sure that you distance from people, that you make sure that if you do need to be in close contact with people that you limit your time and exposure with others, making sure to wear a mask.
What Are the Graft-Versus-Host Disease Symptoms?
Generally, you'll have some side effect that kind of alerts your medical team of that occurring. So, it could be that you could have some changes in your skin. You might also notice that you have some GI side effects. So, it could be like that you're having nausea, vomiting, diarrhea or like abdominal cramping. Sometimes patients might present with like yellowing of the skin or discoloration in your eyes. They also might notice it on your lab values. And if that does occur, they would adjust your immunosuppressive medication.
What Patient Support Services Are Available During AML Treatment?
We have a supportive oncology group. So, a group of psychiatrists, psychologists, social workers, dieticians, who are all there also to help you as well. And I think that they're very valuable members of our team.
Another kind of arena outside of that is for patients to join support groups, to meet other patients, to kind of have someone who's going through something similar can be valuable. And another thing that patients really tell us is very important is the Imerman Angels where they pair you with someone who's undergone something similar to you in the past and it's kind of a person for you to reach out to, to ask questions. And sometimes there might be questions that patients don't really feel comfortable asking their medical team or things maybe that they wouldn't know from not going through it. And so, it's just another person to sort of reach out to.
I also think that it's really important to reach out to these different members of the supportive oncology team. And so, I think it's very valuable for people to meet with a psychologist. Oftentimes I think it would be beneficial for really anybody in the community to meet with these patients, but these are a part of the care team and somebody that's very valuable to help.
For example, I had a patient who had finished her treatment with AML and was very stressed, kind of about risk for relapse of the disease and was having a difficult time sleeping, having a kind of difficult time going back into her regular role in the community and so we had her go see one of our supportive oncologists and she was kind of like, gosh, I wish I would have done that sooner. And it was so beneficial that they helped give her different behavioral techniques that really helped change the tide of everything. And now she's doing wonderful, sleeping well and has the useful tools that she's able to put in place.
Can AML Patients in Active Treatment Receive Dental Care?
I think it's very important to discuss prior to going to the dentist with your medical team, because definitely we would advise to avoid going to the dentist, if you can, when you're neutropenic or undergoing chemotherapy and when your platelet count is low, just because there's risk for infection and for bleeding, but if you're out of treatment and your counts are okay, then we would suggest going and just letting your dentist know about your medical history.
We do recommend making sure to use a soft bristle toothbrush and if you do develop mouth sores to reach out to your medical team and there are things that they can do to help give you, to help with the pain and a prescription for salt and soda mouthwash that will help heal the sores. And during that time, it's very important to make sure that you're not eating too hot or cold foods, avoid eating foods that are too sharp. So, try to eat more softer foods and avoid anything that's too acidic or spicy that can kind of be more irritating.
Is There a Diet That AML Patients Should Follow During Treatment?
There's no particular diet that we recommend. We do suggest though, eating a diet that's rich in fruits and vegetables, so that you're getting a lot of vitamins and minerals. Some patients do like to take a multivitamin, but if you are taking any other supplements, we would definitely suggest talking with your medical team first. Oftentimes these supplements can interact with the chemotherapy that you're taking or the other medications that you're taking, or also could cause adverse effects that we don't want to occur.
Is a Neutropenic Diet Recommended?
A neutropenic diet is something that we do suggest to patients when they are neutropenic and so oftentimes, we recommend with fruits and vegetables, definitely if they can be cooked, that's the best. If things can't be cooked, we definitely recommend removing the peel or removing the skin that's on the fruit or the vegetable. If there's no type of a peeling or skin, we suggest making sure to wash it really well. Things that can be more difficult to clean are berries just with the multiple crevices and so those in certain situations we would suggest to avoid, but if you're able to get frozen or canned or a dried variety of those would be fine.
For meats, we suggest making sure that you're cooking them well and to avoid any type of unpasteurized dairy product. Also, we would suggest avoiding getting any meat from the deli slicer, as oftentimes there can be – they don't clean those often so there's risk of listeria.
When Should You Communicate a Concern with Your Medical Team?
Communication is key. I think we always tell patients, if you don't tell us, we don't know, and we can't help you. And so, I think oftentimes people are like, Oh, it's not that big of a deal. I don't want to bother you. And it's... Never, you should feel that you're being a bother to your medical team, they're there and we're here to help you and that's exactly what we want to do. So, if you don't know, you can't do anything about it.
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