September is Blood Cancer Awareness Month
By Kathleen Hoffman, PhD, MSPH
The term “blood cancer” encompasses so many complex disorders that Inspire has several support communities focused on blood cancers, including groups for Leukemia, Lymphoma, Myeloma, and Myelodysplastic Syndromes (MDS). According to Inspire’s partner, the Leukemia Research Foundation, these four blood cancers impact about 1.3 million people in the United States and their families.1
This year there are expected to be 60,300 people newly diagnosed with leukemia; 83,200 with Hodgkin or non-Hodgkin lymphoma; and 31,000 with myeloma.2 Myleodysplastic syndromes are rarer, with an estimated 10,000 cases total in the US, but the number is expected to rise as the population ages.3
Over 95,000 members have joined our blood cancer communities or have shown an interest in blood cancers on Inspire. Often people have just received a diagnosis. Arriving at the correct diagnosis of blood cancer and determining which kind can be elusive. One member described going to different doctors over several months with shortness of breath and an enlarged lymph node that was attributed to everything from COVID-19 to an STD until one morning:
I woke up to the feeling of having something like a large hot knife running straight into my right leg. To stop the pain I had to have my right leg bent almost like I was in a seated position. Clearly I thought this was just a pinched nerve but the pain was so bad I couldn’t move from this position. My wife brought me to the emergency room where the[y] did a CT scan of my spine and pelvis. The doctor returned with the news that [the] CT scan showed I had lymphoma. What a gut punch! — Inspire Member
An early diagnosis is often crucial to fighting cancer, but this, too, can be a challenge. For example, CLL (Chronic Lymphocytic Leukemia), accounts for about ⅓ of all leukemias but is often asymptomatic and only discovered through abnormal results in an otherwise routine blood test.4
Discussions of medications are part of the supportive communication among members. When one member mentioned that he has just started taking a specific medication for CLL, another member described his treatment and side effects on the same drug:
I was on [drug name] therapy for CLL for 5 yrs -[date] – [date]. Had great results until [date] – developed [drug name] resistant clones. Side effects…mildly elevated Blood Pressure, fatigue, leg edema, bone pain in shins, rib cage, scapula. Your journey may be different. Good luck.
One member with a CLL/SLL diagnosis asked others about taking chemo.
I’m not opposed to taking the medication (although the idea of chemo killing good cells along with the bad ones is not a great idea in my view), but wanted to check into other medications to see if there were less harsh approaches.
A fellow member responded,
“Chemotherapy is not the standard of care these days for CLL or SLL. The standard of care according to the City of Hope and many other sources you can check online is a combination of 2 immunotherapies: [drug names] The results are very promising from the studies that I have read.”
Treatments, side effects, changes in medication or symptoms, and the impact a disease has on both the practicalities of life and on feelings are discussed daily in the communities on Inspire. Members trust each other’s reports of their experiences. In so doing, they provide a vital, living resource for visitors. Beyond the engagement that occurs among members of the blood cancer communities, Inspire visitors find actionable information that they take back to their professional care team. As one member put it, “It’s so helpful to have someone to talk to that’s been through this. It’s a very different kind of support than friends or family can offer especially at this juncture.” At any point in the patient journey, and any time day or night, Inspire members support each other in their health journey.
Our partner, the Leukemia Research Foundation, is dedicated to conquering all blood cancers by funding research into their causes and cures, and to enriching the quality of life of those touched by these diseases. The LRF reminds us during September that “You are the key to awareness and finding the cures.” Their campaign, “Fight With Us,” asks people fighting the disease to share their stories, and to use their media toolkit to spread awareness.
To add to the information available, Inspire has started two resource centers for acute myeloid leukemia and chronic lymphocytic leukemia which in the first month have had over 44,000 pageviews.
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