"I'm sorry to tell you this, but you have cancer."
Like a TV movie, you hear the words. The oncologist had told you they had results back. They needed you to come in right away. You drove in silence to the office. Maybe it's nothing. No, they said it couldn't wait. It has to be cancer.
"You could have knocked me over with a feather.
It's rare and you don't fit the profile.
I would have never guessed."
Everything said after that is a blur. They hand you an info packet. You walk out the door in a haze. There are no tears until you call your family and say it out loud, "it's cancer."
It is troubling, but safe to say, that everyone has been touched by cancer at some time in their life. Cancer, and its treatments, varies widely. No two journeys are the same, even if you have the same type. It can be daunting, even when you are quickly becoming an expert at you or your loved ones treatment, to figure out what it all means. We are certainly still learning on a daily basis and will continue to up date this page with treatment related information. So check back!
The following is based on a lay person's (that's us!) understanding of Wil's leukemia and how treatment has progressed. It is intended as a quick reference, for those interested, and not a substitute for checking with a medical professional. It has taken us months to get to a point where we could really absorb most of what is twisting and turning and changing daily. We have included the websites we have frequented throughout our journey as references for further reading. If you have questions, we can't promise to know the answer! But please feel free to leave a comment and we will try to answer from our experience.
Wil has been diagnosed with Acute Lymphocytic Leukemia, B cell type. Although we will mention other types of cancer, this page will mostly describe his type.
What kind of cancer is leukemia?
Leukemia is a cancer that is found in the blood and bone marrow of someone. It starts in the bone marrow, where blood cells form. Cells go through stages to grow up and can be injured in the process. The 3 types of blood cells are: red (carry oxygen and waste), white (3 kinds that fight infections: granulocytes, monocytes, and T or B lymphocytes), and platelets (stop bleeding). When someone develops leukemia, the growth goes wrong and can be accelerated or in ALL, accumulate into "lymphoblasts." These cells do not function normally and also interrupt how the future cells will develop.
Are there different kinds of Leukemia?
There are four main types of leukemia (and within them subtypes). The type of leukemia depends on on where and when the cell DNA is injured.
Acute Lymphocytic (ALL)
Acute Myeloid (AML)
Chronic Lymphocytic (CLL)
Chronic Myeloid (CML)
An acute cancer means it grows quickly versus a chronic leukemia that grows slowly and people can live years without treatment. ALL starts in the early form of lymphocytes (white blood cell) within the marrow, grows quickly, and without intervention can be fatal within months. After it grows in the marrow it spreads through the blood, moving out to other organs, lymph nodes, spinal cord, brain, etc.
How many people get ALL?
First, it's important to note that most cases of ALL are in children under 7 years old and, in general, people under 20. When you look online, a majority of literature is geared toward treating ALL in those populations. According to the American Cancer Society, this year in the U.S., about 6,020 cases will be diagnosed (all ages) and there will be 1,440 deaths (all ages). However, 1 out of 3 diagnosed is an adult (approximately 2000 adults diagnosed in a year). And 4 out of 5 deaths are adults (1,152 this year). The majority of adults diagnosed are over 60.
What are the symptoms?
Fatigued and short of breath
Anemia
Bruise easily or prolonged bleeding from cuts
Mild fevers
Infections
Pain in bones or joints
Enlarged spleen, liver, or lymph nodes
ALL is a fast and aggressive blood cancer. Most people are hospitalized right away after a diagnosis. Wil is an outlier. His ALL took 8 months to diagnosis. He was almost completely asymptomatic which was part of the mystery. Had he not had back pain, he would not have known for quite some time that there was anything wrong. First tests revealed an enlarged spleen and lymph nodes, but his blood counts were still normal. And several biopsies of the suspected T6 tumor were inconclusive. He has continued to keep surprising many doctors as he seems to follow his own curve!
Are there risk factors?
All in all, the cause of ALL is mostly not determined. Here are some possible risks:
Exposure to radiation or chemicals in manufacturing
Past chemotherapy drugs
Viral infection
Inherited Syndromes such as Down Syndrome
Race (not as common in African Americans)
Gender (more common in males)
So for Wil, my African American husband, with previous good health, and no known exposure to extreme chemicals, he was not the typical ALL patient.
What is the prognosis?
Generally children have higher rates of survival than adults, as the adult form is resistant to treatment. Most adults, 80-90%, will normally achieve remission (absence of leukemia in a biopsy of the marrow, not necessarily "cured"), but about half relapse. The cure rate depends on so many factors, but generally, in adults is a 40% cure rate. It is a cancer with "curable intent" but tricky because it can hide out in the crevices of the spongy marrow, and grow again or turn into another type of cancer.
What is treatment like?
The best words to describe it: Intense and prolonged. Due to the nature of the disease, even after negative biopsies, several yeas of treatment are given to continue to wipe out any hiding cancer cells. In younger adults >40, sometimes a pediatric protocol is chosen because it has better outcomes overall. Wil was 40 when diagnosed and this was the protocol he started.
The treatment has 3 stages:
1.) Induction- 4-6 weeks of inpatient, intense, central line, combo chemo and steroids including direct spinal tap drugs. Goal=negative bone marrow biopsy or "remission". It was during this stage we learned Wil could not tolerate one of the drugs in the pediatric protocol and he suffered liver damage.
2.) WE ARE CURRENTLY HERE: Consolidation- regular cycles of chemo over about months, administered in cycles through inpatient hospital stays of steroids, combo chemo including direct spinal tap drugs, and outpatient clinic treatment. Goal=continue to reduce undetectable leukemia cells. Wil's team is using the Hyper CVAD protocol. His cycles are 6 weeks long with a part A and a part B (3 weeks each, 5-6 days in the hospital, and about 16 days at home with several weekly clinic appointments for blood work, chemo, and sometimes transfusions if needed.
3.) Maintenance- 2 years, sometimes with a round of "re-induction"' daily and weekly chemo. Goal=relapse prevention (We will update this section when he gets there!)
*Depending on the situation, sometimes people also require a bone marrow stem cell transplant. If we get there, we will update this area as we learn more.
What types of drugs are used?
We can only speak for Wil, but here is a list, for all you medical nerds out there, of his cocktails:
MORE TO COME SOON!!!
What are common risks during treatment?
MORE TO COME SOON!!!
Can you tell me some good news???!!!
No one fits every statistic. Numbers are numbers. We live in the knowledge that this will not be an easy fight but Wil has a great treatment team at a great hospital. So far he has shown minimal disease after a few rounds of therapy. His blood counts were better than some at the time of diagnosis and it had not spread to his brain or impacted a lot of body areas. And best yet? Wil is the ever outlier, the non-conformist, in his life B.C. (before cancer) and now in his fight.
Information was summarized from the following websites:
www.cancer.org
www.lls.org
www.cancer.gov
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