Dr. Gregory:
Hi, I'm Dr. Tara Gregory at the Colorado Blood Cancer Institute in Denver, Colorado. I am a physician who specializes in blood cancers in peripheral blood and marrow stem cell transplantation.
Graphic: What does the day-to-day life look like for a GVHD patient?
Dr. Gregory:
The day-to-day life for a GVHD patient can really vary. And, as you would expect, it varies based on the severity of the GVHD. So for patients who have mild GVHD, where they're applying some creams, or maybe they do have to take some medications, in that situation there might be some extra fatigue. Maybe before you ever got a transplant and had to deal with your cancer journey, you could go out and mow the lawn, no problem, then you were off to the grocery store. And, in this situation, you can still do those things that you like to do. Or maybe you don't like to mow the lawn, but you can go mow the lawn. But then you notice, "I've got to go sit down for a while," or "I've got to take a nap." So definitely, some chronic fatigue can be part of it.
Then we have the kinds of GVHD that can change your ability to do what we call your "activities of daily living." So joint pain and stiffness, it can be harder to maybe bathe yourself, do driving, or just being very active. That's not very common that we see it, but it can change things. And then obviously, for a patient with severe GVHD in their management, they're typically in the hospital for that management. And I think that's a very big change in quality of life, in a day-to-day schedule, if you're having to stay in the hospital for weeks on end. But again, that's a very rare situation.
Graphic: What should caregivers know?
Dr. Gregory:
I think two things are really important for caregivers to know about GVHD. First of all, I think caregivers also understanding the signs and symptoms of GVHD; it can be very important to point out to the care provider, the nurse practitioner, PA, or physician. To say, "I've noticed this," or "This is happening," or "Could this be GVHD?" I think sometimes changes, especially in chronic GVHD, can be subtle and build over time.
So it's definitely very helpful to have that extra set of eyes to help acknowledge things that might be a little bit different. And I think knowing that with GVHD, it's a definite journey. I think caregivers know what that word means, "journey" through cancer care with diagnosis and chemo. And even, just getting to a transplant and getting through the first hospitalization of a transplant.
And when we have to change treatments and address things like new infections or the new development of GVHD, things end up really busy. And your caregiver definitely is very important with helping with meal prep, and maintaining the home front, and that sort of thing, which is more work for the caregiver. And then – but things ebb and flow. And so then we can start to see things even out over time too.
I think a good analogy for caregivers and even patients is that transplants are a marathon. And getting diagnosed, and getting your initial treatment, and getting out of the hospital from the initial transplant, that's the first mile. You've got a lot ahead of you.
So this is just a current – a really long journey in healthcare. And partnering between the patient and the caregiver to focus on goals of quality of life and making sure that every day is a good day or an important day that's treasured is really important.
Graphic: When should you see a GVHD specialist?
Dr. Gregory:
In my practice, I think it's very important to continue following up with your transplant physician because transplant physicians are GVHD specialists. In any particular group, there might be a specialized GVHD clinic where you transition to for survivorship. Or sometimes, transplant physicians take care of their patients all the way through, from diagnosis to management of GVHD long-term. So it's definitely important to stay connected with your transplant team and be assessed for graft-versus-host disease, at least yearly, in terms of your survivorship journey.
Graphic: What are the frontline treatments for GVHD, and how do you know if they are working?
Dr. Gregory:
The frontline treatments for GVHD are really starting to change. It used to be that we would just use steroids, and big doses of steroids, and that's still the case. However, we have new medications, specifically, oral medications, that help decrease the inflammation that the immune cells are able to cause, and not so much, turn them off and suppress the immune system so much. So the steroids really help us to control that initial inflammation, and the new medications are helping us to stay off of them.
Then sometimes, if we don't see the volume of diarrhea, or you're vomiting and the vomiting doesn't stop, or you have belly cramping and the cramping's not getting better, or the rash isn't improving noticeably within a week or so of being on that initial treatment, then we might talk about adding in additional medications, which could be IV medications or different pills. We have quite an arsenal of medications available to us to help with GVHD.
