Living with myeloproliferative neoplasms (MPNs) can mean navigating through plenty of unanswered questions involving the condition. You may be curious about how you can manage fatigue, why you experience bruising, or the best way to navigate a telehealth appointment with your oncologist.
“The biggest problem for me is fatigue,” one myMPNteam member said. Another asked, “What are some of your best ways to combat fatigue?”
To help address these questions, myMPNteam sat down with Dr. Matt Kalaycio during the recent one-hour event, “Managing and Treating Leukemia and Other Blood Cancers.” Dr. Kalaycio is a board-certified hematologist and a professor at the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University. Dr. Kalaycio also sits on the board of directors for the National Comprehensive Cancer Network.
Check out Dr. Kalaycio’s insights and advice for a variety of questions about living with myeloproliferative neoplasms.
Fatigue is ubiquitous in our field, and it’s very difficult to sort out where it comes from. I wish I could tell you that fatigue will absolutely go away, but I can’t. Fatigue seems to linger, and it’s very difficult to fix. Having said that, one of the things we do when we’re assessing folks with blood cancer is try to see if there are, in fact, reversible causes of fatigue.
For example, if hemoglobin is low and represents anemia, then a blood transfusion may well relieve the fatigue. Or if there’s trouble with the thyroid gland such as hypothyroidism, we can fix that. If there’s adrenal suppression because of steroid use, we can fix that. If testosterone levels are low, we can fix that.
However, we can’t always fix fatigue related to the underlying malignancy, unless we get rid of the malignancy — and getting rid of the malignancy requires treatment, and the treatment can also cause fatigue. So until we cure the disease or stop the treatment, fatigue often is part and parcel of the disease process.
In terms of lifestyle changes that people might want to try, in my experience, the more active someone is, the fewer problems they have with fatigue. So an exercise routine is very important. That may be very hard to start, but once a routine gets started, it becomes a lot easier. So I don’t recommend your first foray into exercise being a 10K — I recommend you start with walking around the yard, and then walking around the block, and then walking down the street, and expanding with time.
Although there’s no specific diet that’s recommended to help relieve fatigue, keeping up nutrition by ensuring you take in the calories you need to actually do the exercise is important. Working with your dietitian, you can come up with a diet that will provide the calories necessary to actually do the things that you want to do.
Finally, one area that I think is often missed is that we pay very little attention to sleep habits. I’ve gotten into the habit of asking nearly all my patients how well they sleep. And I often find that they sleep quite poorly for lots of reasons, including the medicines that we give — steroids being a prime example of a medicine that can lead to insomnia.
But also, when you lie down at night and you start thinking about having leukemia, lymphoma, myeloma, or some other blood disease, that it makes it very difficult to fall asleep and to have restful sleep. I think anything that can be done to improve your sleep habits can help you manage fatigue.
Bruising is very common. The most common reasons that folks with blood cancers bruise is from either medication that thins the blood — like aspirin or anticoagulant drugs — or low platelets. Platelets are the cells that float around in our blood that lend themselves to blood clots. Having too few of them leads to a bleeding risk, and with that comes bruising. So low platelets and anticoagulant medicines to thin the blood to either prevent or to treat blood clots are the most common reasons, but there are other reasons why folks get bruises that are independent of those two mechanisms.
I would say the most common one would involve steroids. We use prednisone and other steroids a lot when we treat blood cancers, and that’s particularly true when we treat multiple myeloma. Steroids tend to cause the backs of the hands and the arms to lose their fat pads, and therefore, their ability to absorb trauma. So incidental trauma, even just crossing your hands or something like that, can lead to bruises that show up on the backs of the hands and the arms. This is very common in folks who are taking steroid medications.
If you’re not sure about why there’s a bruise on your arm, your leg, or some other place where you don’t remember having any trauma in that spot — and you’re not on a blood thinner or aspirin — well, sometimes things that look like bruises turn out to be something else. And when we’re talking about blood cancers, the first thing we have to worry about is that it’s part of the blood cancer itself. And so what looks like a bruise isn’t always a bruise, and it’s always a good idea when you’re with your physician to show them the bruises that you have, or send them a picture and let them take a look and make sure that it is, in fact, just an ordinary bruise and not something more ominous.
I’ve been happily impressed with the ability of telehealth to enhance patient care. A lot of what I do involves bone marrow transplant, and in the immediate aftermath of a bone marrow transplant, I really need to have people in my office where I can see them and examine them. But I also have patients in my practice who are on long-term medications for leukemias that are under control and have been for a long time. And in that situation, where I used to see them every six months or every three months or whatever their duration interval was, I now can do it virtually. And I get the same information, as long as I get the blood test from a hematologist’s perspective — what we’re interested in is the blood. And if there aren’t any symptoms, we often don’t need to actually see them in person.
In those cases, as long as we’ve got access to a laboratory that can give us blood, then we can converse over the phone or on a virtual visit. Now that the insurance companies have begun covering these virtual visits, I think they’re here to stay and are going to become more and more common.
Absolutely. One of the tragic consequences of the surge in the pandemic right now is that we’ve restricted visitation at our institution to only one visitor. That’s not always adequate. You can imagine an older couple, maybe in their 80s, who are inseparable. They’re coming to their appointment, but their child who’s a pharmacist would like to be in the room with them. A third person, who’s more health literate than they are — it makes perfect sense that all three of them would be there. And these restrictions won’t allow that.
The more people who hear the story directly from me, the better. So if I’m asked, “Can I record this?” or “Can I call someone on the telephone and have them listen to it?” I say, “Yes, absolutely.” That’s far better than someone interpreting what I say, and then delivering the news to someone else — we’ve all played that telephone game. Well, it’s true — as it goes from person to person, some of the message is lost. So I absolutely encourage people to bring family members and loved ones to their visits.
On myMPNteam, people living with myeloproliferative neoplasms come together to ask questions, give advice, and share their stories with others who understand life with the condition.
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