Cold agglutinin disease (CAD), on its most basic level, is the premature destruction of red blood cells. This creates all sorts of problems for patients with this disease. CAD can be known as primary or secondary. Primary, meaning there is no known cause. This is what I have; it just happened and now I live with it.
I do not know what the future holds for me. I just know what I need to do to keep my hemoglobin stable. This can be done by staying warm, but that isn’t always an easy task. There is an exact right temperature I need to be all the time, and it is impossible to figure out what it should be. I can only go by how I feel, which results in layers on and off, all day long.
People that have secondary CAD have it harder than I do. All that I must deal with pales against what they do. When you have secondary CAD it is because you have another underlying issue that has caused CAD. This can vary from other autoimmune diseases to cancer.
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Patients with primary CAD can stay primary their whole lives or can slip into secondary. This is my fear. A close family member has been battling lymphoma. The chemo worked initially, followed by a short-lived remission, but their cancer came back almost immediately and now they are working on CAR T cell therapy.
Read more about prognosis with CAD
I am absolutely fascinated with this immunotherapy. This amazing therapy harnesses your own immune system to attack and kill many forms of cancer. The process starts with the collection of your T cells. They are sent to specialized labs that modify them to kill the specific form of cancer you are battling. The are grown by the millions and when they are ready, typically after a few short weeks, you are infused with them.
The way I describe it is that they are like Pac-Man. After an infusion, they run around your body eating up every cancer cell until they are exhausted. The very first person it was used on was in 2010, and he lived the rest of his life cancer free.
If you ask me, we are on the precipice of making a meaningful impact on the lives of people with this ferocious disease.
There are many forms of disease that people with CAD can develop and it is very often cancer. The most common blood cancers associated with CAD are lymphomas and leukemias. CAR T cell therapy has been shown to fight successfully against these diseases, even when they are in an advanced state.
Progress in medicine and research takes time, as there are many hoops to jump through—right down to eventual approval. Much happens behind the scenes, as with CAR T cell research. They have learned in a brief period that this form of therapy does not need to be used only as a last resort. They found that it can be used right after a first line therapy has failed. It used to be that oncologists had to offer 3 to 4 other treatment options, wait for them to fail, and then they could offer CAR T cell therapy.
Read more about CAD therapies
This is all fantastic news for patients, but it does have some drawbacks. First, this therapy is incredibly expensive. Some brands can be as much as $1 million, and there are currently only 6 on the market. The patient does have to go through a medical approval process, which includes mental health checks. The patient cannot have any other infections, such as dental infections. All of these must be taken care of beforehand.
There are many side effects that range from flu-like symptoms to severe reactions. Luckily, they have figured out that certain steroids and other drugs can help treat these side effects. One issue I would not have thought of is the complete failure to grow the millions of cells in the lab. If this happens, it could be from the damage done by prior chemotherapy. Knowing this, hopefully they’ll be able to offer it as the first line of treatment more often.
I take comfort in knowing that we are making huge advances in therapies for cancers, even in their advanced stages. I am hoping that my CAD remains mild and primary for the rest of my life. Who knows, maybe they will figure out how to eradicate CAD altogether?
