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    MDS - What It Is, Symptoms and How It's Treated

    There is some confusion over what myelodysplastic syndromes (MDS) are – MDS used to be considered “pre-leukemia” or “smoldering leukemia.” In about one in three patients, MDS develops into acute myeloid leukemia (AML), a serious, fast-growing type of leukemia. Scientists and physicians once considered MDS as a blood disorder with a low potential for developing into cancer, but research now shows that it is a form of blood cancer.


    What Is A Myelodysplastic Syndrome?

    The National Cancer Institute defines myelodysplastic syndrome
    as: A type of cancer in which the bone marrow does not make enough healthy blood cells (white blood cells, red blood cells, and platelets) and there are abnormal cells in the blood and/or bone marrow. When there are fewer healthy blood cells, infection, anemia, or bleeding may occur. In other words, MDS lowers the levels of all three of our blood cells.


    Red cells. Our red cells absorb oxygen in our lungs and deliver the oxygen to every cell in our body and then brings the carbon dioxide back to our lungs. A low red blood cell count is called anemia. Anemia causes a patient to be tired, weak and pale. If the anemia is severe, a patient might be short of breath.
    White cells. Our white cells fight off infections from bacteria and viruses. We have three types of white cells: 1) Granulocytes, 2) Monocytes and 3) Lymphocytes. In MDS, patients may experience low granulocytes and monocyte counts and have abnormal lymphocytes.
    Platelets. Our platelets are pieces of a large cell called a megakaryocyte — pieces of these large cells break off into the bloodstream to help clot our blood to prevent dangerous bleeding. Low platelet counts cause bruising and excessive bleeding from even a small cut.
    Low blood counts may be picked up during an annual physical before a patient has any symptoms.
    Statistics, Symptoms and Diagnosis of MDS
    About 10,000 people in the U.S. are diagnosed every year with MDS. It is uncommon in people under 50 and most common in people over 70. Because the baby boomers are entering the over-65 population, experts expect MDS to increase.
    Symptoms are subtle. Be certain to tell your doctor about these symptoms. Simple blood tests can rule out other causes of these symptoms. Bone pain Bruising and bleeding. Fatigue Fever Frequent infections Pale Pinpoint-sized red spots on your skin Shortness of breath Weakness



    In addition to a CBC (complete blood count), several other tests determine if a patient has MDS.
    Peripheral (circulating) blood smears. A pathologist examines a thin layer of the patient’s blood to determine the percentage of the different types of blood cells and if any look abnormal compared to normal cells.
    Bone marrow biopsy. This is the definitive diagnostic test. A pathologist examines the appearance of our bone marrow, determines the different cells counts and performs a chromosomal analysis.
    Molecular testing. Laboratory tests determine if the patient has specific genes, proteins, and other factors that are specific to MDS. This information helps determine effective treatments.
    Cytogenetic (chromosomal) analysis. About half of MDS patients have at least 1 chromosome abnormality. Patients with one chromosomal change are considered Primary MDS. Patients who have multiple chromosomal changes are termed Secondary MDS.
    Immunophenotyping. This test detects antigens (a specific type of protein found on the cell surface) helping to guide treatment options.
    Treatments for MDS
    Patients are classified into sub-types based on these features.
    Blood cell counts
    Percent of blasts in the bone marrow
    Risk of developing acute myeloid leukemia (AML)

    Medicine treatments include chemotherapy, conventional therapy or immunotherapy. A patient’s treatment is determined, in part, by their International Prognostic Scoring System (IPSS-R) score. This score helps predict the chance of developing AML and overall survival. There are five scores, ranging from very low risk to very high risk.
    About 30 to 40 percent of MDS patients benefit from chemotherapy.
    Patients at high risk for developing AML benefit from conventional therapy drugs including Cytarabine, Daunorubicin or Idarubicin. Lenalidomide (Revlimid) is very effective for low-risk patients and patients with the 5q chromosomal change.
    The only current treatment that can produce a long-term remission is high-dose chemotherapy followed by either a bone marrow transplant or a stem cell transplant.


    WhatNext …
    The MDS Foundation designates MDS Centers of Excellence. These centers have demonstrated skill in the treatment of MDS. Patients may want to consider obtaining a second opinion from one of these centers. New clinical trials offer hope for many patients. MDS is often referred to as a bone marrow failure disorder
    which is considered a blood cancer.


    Related Articles 

    Sorting Through the Confusion Over Leukemia Types


    Understanding the Differences Between Hodgkin's Disease and Non-Hodgkin's


     Lymphoma


    What Is Multiple Myeloma - An Educational Article


    Types of Blood Cancers

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    Long Term Hormonal Therapy and Joint Pain

    Post-menopausal women who had hormone-positive breast cancer usually take an Aromatase inhibitors (AIs) to help prevent a recurrence of their breast cancer. Post-menopausal women still produce estrogen — an enzyme called aromatase converts androgens (sex hormones produced by the adrenal glands) into estrogen. The AI (aromatase inhibitor) prevents this conversion to estrogen.


    The AI is effective in reducing the chance of recurrence, but it puts women at higher risk for osteoporosis. The AI is also responsible for joint (and muscle) pain. This pain usually develops within the first three months on AI therapy. Joints affected include fingers, hands, wrists, elbows, shoulders, knees and ankles. Patients may also develop carpal tunnel syndrome and trigger finger and also may suffer from bursitis and tendonitis.
    *Hormone Therapy*


    Unfortunately, some women’s pain and discomfort is so severe that they discontinue this useful therapy.
    Why do AIs cause joint pain?
    Researchers don’t know why. It doesn’t appear that switching to a different AI helps either. However, if you want to switch, some experts suggest that you stop therapy for 6-to-8 weeks to make sure that the AI you were taking is the cause of your joint pain.
    Researchers believe that decreasing levels of estrogen are responsible for joint and muscle pain and discomfort. About half of all women on AIs develop joint pain. It is estimated that some 20 percent stop taking their AI due to the severity of their pain. It’s important that patients work with their medical team to control their joint and/or muscle pain so that they continue to take their AI for the full five years, as recommended.
    Coping with joint and muscle pain while taking an AI
    Patient education is important — if the patient is told that they may experience joint or muscle pain as a side effect of their medication, they are more likely to be able to tolerate the discomfort. Healthcare professionals should also offer the possible solutions before patients begin AI therapy.
    Be sure to let your oncologist know about your joint or muscle pain so that the two of you can best address your particular situation.
    Acupuncture. A study, published in July 2018 in JAMA, compared acupuncture to sham/faux acupuncture and control (no acupuncture). The study confirmed that acupuncture is effective for joint and bone pain along with the stiffness that some patients suffer.


    Heather Greenlee, N.D., Ph.D., a co-author of the study, suggests that breast cancer survivors seek out an acupuncturist who is experienced with working with oncology patients and who will follow the study’s recommended point protocol.
    Acupuncture does present a couple of disadvantages. Some potential patients are afraid of needles. The other drawback is cost. Medicare does not cover acupuncture — private insurance coverage is limited. Costs per session average between $50 and $75. Lower cost clinics are available through POCA.
    Exercise. A Yale study of women who were experiencing joint and muscle pain while taking AIs reported less pain, felt physically stronger and daily living activities were easier after just two months of exercise.
    Many people believe that exercise would hurt more — but they soon learn that the opposite is true. Exercise does relieve joint pain. One patient who experienced terrible joint pain in her fingers took up knitting on advice from a friend. To her amazement, knitting (aka exercise for her hands) relieved her pain and allowed her to keep moving her fingers. 
    (NOTE: I have arthritis in my right hand, and my joints are quite swollen. I find that just flexing my fingers several times a day relieves the stiffness and discomfort.)

    Resistance bands and lifting some weights (just 5 or 7.5 pounds is sufficient) helps us build muscle mass which, in turn, lessens joint pain. You don’t need to go to a gym. You can buy inexpensive weights at Walmart or Goodwill.


    Walking is free and helps our knees and hips.

    Vitamin D. Studies show that muscle strength improves as vitamin D levels increase. Some patients seem to benefit from taking extra vitamin D. Be sure to talk to your oncologist before you begin supplementing with vitamin D. A simple blood test shows your vitamin D level.
    Weight loss. AI joint and muscle pain is worse in women who are overweight. Losing weight is an effective treatment for simple arthritis. Weight loss also helps prevent recurrence of breast cancer.
    Yoga.
    Turning Point reports that yoga and tai chi may help reduce pain caused by AI therapy. Yoga and tai chi are also mood boosters, helping patients better cope with their discomfort.
    Note: Long-term use of nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen and naproxen are generally not recommended because of their wide-ranging side effects, including gastrointestinal, cardiovascular and kidney problems.


    Don’t suffer in silence. Talk to your healthcare provider about your joint and/or muscle pain if you are taking an Aromatase inhibitors (AIs) to help prevent a recurrence of your breast cancer. Adherence to the recommended length of time of treatment is critical to reducing your risk for recurrence. Be proactive to take care of yourself.

    Related Articles

     Help Me Decide If I Should Do Hormone Therapy - Question -


     I Have Insomnia While on Hormone Therapy (AI Therapy) Help!


    Read The Experiences of Others Having Hormone Therapy


     Living With Breast Cancer Experiences

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    How to Cope With The Loss of A Loved One From Cancer

    Each person experiences grief differently — the loss of a loved one from cancer is particularly difficult. Spouses, parents, adult children and children still at home may go through several phases of grief
    once their loved one is diagnosed with cancer.


    And of all of the diseases, a cancer diagnosis is one of the most difficult medical situations that we must face. After the shock of our loved one’s diagnosis, we may be in denial for a few days, finding it difficult to believe that our loved one has cancer. Some of us experience anger, feeling that the diagnosis is not fair. We may bargain with ourselves, promising that we’ve change our behavior or do something better if only God will spare our loved one.

    But reality sets in, and although we feel sad and distressed, caregiving takes precedence, and we adjust to the new reality that our loved one has cancer. If we’re fortunate, our loved one will respond to treatment, and our nightmare will become a thing of the past.
    Receiving Bad News
    Unfortunately, not everyone responds to treatment or their cancer recurs and the new treatments don’t work. This bad news is a difficult time for the patient and their loved ones. Some people experience a profound sense of sadness that may be as deep and distressing as when their loved one dies.
    One of the better aspects of having cancer is that our medical teams have experience to help us through our grief and loss. Hospice care is available for any patient who has advanced cancer with a life expectancy of less than six months. Hospice care focuses on symptom relief for the patient and emotional support for family members. Some patients receive hospice care at home. Others may choose a special hospice center. Hospice care is available at nursing homes too. Hospice care includes grief and bereavement counseling for the patient and their family members.
    The decision to accept hospice care is gut-wrenching for both patients and family members. Patients may be reluctant to accept hospice care. They may believe that it means that they are “giving up.” Family members, too, may need time to adjust to the news, but most patients and family members are grateful that they chose hospice care.
    Every family situation is different as they process the impending death of a family member. It’s important to respect and honor your loved one’s wishes regarding end-of-life care.


    The Phases of Grief
    We begin to experience grief as soon as we learn that our loved one is not going to survive their cancer. And grief extends well after the death of our loved one. Don’t be surprised if you feel a myriad of emotions and feel like your emotions are a roller-coaster ride of feelings.
    Anticipatory Grief. Grief begins with the realization that our loved one is dying. Feelings include fear, dread, depression and wondering how we will be able to carry on after the loss of our loved one. This is also the time to wrap up “unfinished” business, including expressing love or asking forgiveness. If our loved one feels up to talking, reminiscing over good times from the past may help the patient and their family find acceptance of the inevitable. Loved ones need to ensure that that their anticipatory grief is not too much for the patient to handle. Loved ones don’t want to cause any more sadness or worry. It’s possible that you may not feel anticipatory grief — you may have found peace of mind and acceptance in the short term.
    Normal Grief. These feelings occur immediately after the death of our loved one. Behaviors include crying, sobbing, shock, disbelief or emotional numbness. Some people are stoic, trying to be strong for other family members. Other people sob openly or for long periods. Grief is experienced differently among family members and friends. The spouse may feel particularly anxious over the prospect of living alone. Loss of appetite and insomnia are common. Returning to one’s job or normal activities may be impossible early in the grieving process. Memory loss may occur too – some family members may be unable to remember the events on the day of the funeral. Some loved ones have nightmares or panic attacks.
    Complicated Grief. Some people don’t appear to feel sufficient grief or seem distressed enough while other mourners are unable to resume living again. The circumstances of a person’s death can influence the way we grieve. If our loved one is elderly and has lived a full life and was in pain and discomfort before their death, it may be easier to accept our loss and resume daily activities. But if our loved one is younger or passes away more quickly than anticipated, we may experience an extended period of depression and sadness. Studies show that men are more likely to be depressed and suffer health problems after the death of their spouse than women.
    Grief in Children. Children experience grief differently than adults. Young parents who die from cancer often leave young children. The surviving parent not only has to cope with their grief but also help their children process the loss of their “Mama” or “Daddy.” Children don’t display the same emotions as adults. They can be sad for a few minutes and then become engaged in playtime, acting almost like nothing happened. This is one of the ways that a child’s mind protects itself from emotions that are too strong for them to handle all at once. Children are more likely to talk about death, even to strangers, as they try to process the concept that a person is not going to come back home. Children have three primary questions about death.
    1. Did I do something to cause this? 2. Is this going to happen to me too? 3. Who is going to take care of me?


    Moving Forward …

    Each person’s grief is different. Some people adjust after a few months and can find joy in living again. Most people find the first year is the most difficult — our birthday, their birthday, our anniversary, every holiday — these special days are poignant reminders that our loved one is gone. Some people avoid other people on these special days because it is too painful to see others carrying on their lives when we are hurting inside so much. Other people try to surround themselves with people and activities to help prevent the empty feeling of loneliness.


    There is no right way or wrong way to work through our grief and mourning. Each person experiences grief differently. If you find yourself filled with regret, guilt and depression that won’t go away, consider joining a support group or see a counselor for a few sessions.
    We human beings are resilient. Most of us can pick up the broken pieces of our life and put them back together so that we still find meaning in our lives and learn to laugh and experience joy again. Eventually, when our thoughts focus on our lost loved me, we’ll remember the good times and the joy that our relationship generated. We’ll smile over the memories and forget the pain.
    Give yourself time. Take small steps to regain the confidence you once had. Life changes when our loved one dies. Although life will never be the same again, life can be good again if we allow others back into our life. Don’t feel guilty when you begin to laugh and smile again. We all do the best that we can do with the circumstances we are given. Consider what your loved one would tell you if you talked to them about feeling guilty over things done or things left undone. Our loved ones would never want to see us suffer needlessly.
    Time heals.
    Related Articles
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     Acceptance - A Key Factor In Moving On With Your Diagnosis
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    Sorting Through The Confusion Over Leukemia Types

    Are you confused about leukemia? Patients and their families may be confused by their “official” diagnosis because it is contains three words and is often referred to by its acronym (an abbreviation of the first letters of the words in the name of an organization or disease – for example, NASA, ATM or COPD).


    What is Leukemia?
    Leukemia is kind of cancer that originates in our bone marrow, causing abnormal white cells to be produced. Our bone marrow (the spongy, red tissue in our large bones) produces lymphocytes. Lymphocytes are found in our blood, lymph nodes and spleen. Normal lymphocytes fight bacterial and viral infections.
    Although leukemia is sometimes considered a childhood cancer, it is far more common in adults over 40. Leukemia is more prevalent in men. Symptoms vary by which type of leukemia a patient has. Common symptoms include:
    Bleeding easily or bruising Bone pain Chills or fever Fatigue Frequent infections Frequent nosebleeds Night sweats Petechiae (tiny red spots on the skin) Swollen lymph nodes Weight loss



    Leukemia can be either acute or chronic. The acute kind develops rapidly – these immature cells (called blasts) can’t perform any immune system functions. The chronic kind of leukemia develops in more mature cells and can still carry on some immune functions; these cells reproduce more slowly than the immature blasts.
    Types of Acute Leukemia
    Acute leukemia develops more quickly. Acute leukemia affects the immature cells, called blasts or stem cells. Because acute leukemia types affect our stem cells, they multiply rapidly — quickly overtaking and crowding out our red cells and our platelets. The growth may be so rapid that acute leukemia may spread to other organs of the body and our central nervous system.
    There are two types of acute leukemia.
    Acute Lymphocytic Leukemia (ALL). Almost 6,000 people of all ages in the U.S. are diagnosed with ALL annually. Four out of every 10 patients; the remainder are children, with the majority being under the age of 5.
    This form of leukemia occurs as several sub-types, depending on which type of lymphocyte is affected. There may also be chromosomal or genetic changes in the cancer cells. The sub-types and cell changes help guide treatment for each patient.
    B-Cell Lymphoblastic Leukemia – the most common subtype, accounting for 88 percent of childhood cases and 75 percent of adult cases. This type begins in the immature cells that would become B-cells
    T-Cell Lymphoblastic Leukemia – this leukemia occurs in the cells that would become T-cells.
    Philadelphia Chromosome Positive Lymphoblastic Leukemia – this uncommon subset happens when two chromosomes (9 and 22) fuse together. This subset is treated in a completely different manner.
    Acute Myeloid Leukemia (AML). This type of leukemia affects the immature cells that would develop into neutrophils, one of our infection fighting white cells. They don’t develop as expected leading to a buildup of immature blasts and not enough red blood cells or platelets. About 21,500 people in the U.S. develop AML annually. Almost 70 percent of patients are children. AML is the second most common leukemia in the U.S.
    Symptoms are related to the decrease in number of healthy blood cells. Patients experience anemia, neutropenia (and infections related to extremely low neutrophil counts) and the tendency to bruise easily. Some patients experience all three of these symptoms.
    The World Health Organization developed a new classification system of subsets of AML. These subsets help develop an individualized treatment regimen for each AML patient.
    Immediate treatment is recommended once a patient is diagnosed with acute leukemia of either type. Treatment options include: Chemotherapy (either phased or intensive) Targeted Therapy Radiation Stem cell transplant

    Types of Chronic Leukemia
    The chronic types of leukemia develop more slowly and sometimes produce vague or no symptoms. Chronic types of leukemia are sometimes discovered through regular lab tests as part of an annual physical.
    Chronic Lymphocytic Leukemia (CLL). CLL is the most common type of leukemia in adults. Approximately 20,720 adults are diagnosed annually in the U.S. CLL is more common in adults over 50 and is more prevalent in men.
    Many patients are asymptomatic. There are two forms of CLL. The slower-growing form may remain stable for years. The faster-growing form eventually causes red blood cell and platelet counts to drop, resulting in anemia, neutropenia or thrombocytopenia.
    Vietnam veterans who were exposed to Agent Orange and other herbicides who develop CLL are entitled to VA disability. If you are a Vietnam veteran and think that you may have been exposed to Agent Orange, the VA urges you to apply for compensation at 
    Department of Veterans Affairs


    Slow-growing CLL might just be watched and monitored if a patient’s CLL is stable. Treatments include chemotherapy, targeted therapy, radiation, surgery and bone marrow or stem cell transplants.
    Chronic Myeloid Leukemia (CML). About 9,000 people in the U.S. are diagnosed annually. Half of all patients are over 64. These patients may experience the Philadelphia translocation of genes 9 and 22 just a patients with acute lymphocytic leukemia.
    CML has 3 phases:

    Chronic – when the bone marrow contains less than 10 percent blasts. Accelerated – when both the blood and bone marrow contains 10-19 percent blasts. Blast crisis – a crisis occurs when blast levels reach 20 percent or more in the bone marrow or bone and it is difficult to control the number of white cells. 

    Resistant CML – if a patient’s CML doesn’t respond to treatment or comes back after treatment, it’s considered resistant CML. Without treatment, CML will progress to the accelerated phase and then into the blast crisis phase after 3 or 4 years.
    CML is treated with chemotherapy, targeted therapy and immunotherapy.
    5-year survival rates for CML patients have dramatically increased — from 22 percent in the mid-1970s to 67 percent for patients diagnosed between 2008 and 2014 — thanks to the development of targeted therapies like imatinib (Gleevec).


    Rare Types of Leukemia
    There are a number of uncommon types of leukemia — most of these are rare sub-types of the four most common types of leukemia discussed here. There are several types that are of interest.
    Sezary Syndrome. This is a sub-type of T-cell lymphoma that occurs on the skin. It’s slow-growing and is detected by large numbers of lymphoma cells are found in the blood and a reddening of the skin. Hairy Cell Leukemia. This rare type of chronic leukemia is known by the short, thin projections that protrude from the cells. Treatment is effective — 5 year survival rates are 90 percent. Large Granular Lymphocytic (LGL) Leukemia. This uncommon form of leukemia is characterized by enlarged lymphocytes that are grainy in appearance. Chronic Myelomonocytic Leukemia (CMML). Uncommon (only 3 in every 100,000 people) with features of two different kinds of blood cancer.
    Other uncommon forms of leukemia include B-cell prolymphocytic leukemia (B-PLL) and T-cell prolymphocytic leukemia (T-PLL).
    The Bottom Line …
    Leukemia is one of the few types of cancer that affect both children and adults. There are four common types of leukemia – two are acute and require immediate treatment — two are chronic, with some patients watched until their disease progresses to the point of requiring treatment. Overall-survival rates have quadrupled since 1960. More men have leukemia, and researchers still aren’t sure why. Despite treatment improvements, leukemia is the still the sixth leading cause of death in the U.S. for both men and women.
    Related Articles

    Living With Acute Myeloid Leukemia (AML)


    Types of Blood Cancers


    Research Means HOPE For Rare Cancers


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    Cancer Steals a Smile, Ray of Sunshine, and Life

    Last Tuesday, cancer stole another life. This one wasn't just another cancer patient, this one was a dear family member of ours. She was one of the sweetest people that could be found on earth. She was a beautiful young woman, mother to two great sons, wife to a fantastic husband, who will be missed dearly by all of her family and friends.

    We see new cancer diagnoses almost every week. All of us know of someone who has been diagnosed, either themselves, someone in their family, a friend or acquaintance. Nobody is safe from being the next person that we know that has been diagnosed with cancer. No matter what your race is, your gender, your age, your status in life, or how you live your life, we are not exempt from being a cancer patient. When we learn of a new diagnosis of someone we are aquanted with we often say something like, "that's terrible", "that's so sad", "I'm sorry for that", or something similar, then we go on with our life. 

    But when the person diagnosed is one of your own dear family members, one who has tried to do everything that a good wife and mother should do, one of the most liked persons in the little town she lived in, and the type of person who many would point to her life and say "that's how you do it", then we start asking why? Why was she diagnosed and taken from us? We say she didn't deserve this, and we mean it. This one cancer diagnosis is one of many that have been in our family, yet, this one hurts more, for many reasons. 
    Our sweet Adrienne Lynne Light was diagnosed with triple negative, invasive breast cancer a little less than a year ago. She stepped up with a positive attitude and determination that made this three time survivor proud. She went through her first rounds of chemo like a champ, continued working at her job at Rolla Family Dentistry, where her work family supported her and loved her just like our family does. 
    Her story of being diagnosed is one more reminder that everyone needs to be aware of symptoms, get screened, eat right, and exercise to stay in good health. These things increase our odds for NOT being diagnosed, but they are no guarantee that we won't be. Adrienne is a perfect example. She was fit, in good health, lived a good life, but it made no difference. Sometimes even when you are doing all of the right things, cancer still comes.

    After chemo treatments, she also had a double mastectomy and radiation. But during one radiation visit a rash was discovered on her skin that was determined to be the breast cancer that had metastasized. A scan later revealed that it had also spread to her lungs. 
    A new type of radiation called Hyperthermia Radiation, where the skin is heated to increase blood flow to the area prior to radiation which in turn makes the cancer cells more susceptible to being killed by the radiation, was used on her new cancer location on the skin. 
    After finding the metastasis, her doctors started oral chemo treatments using Xeloda. This treatment was not kind to Adrienne. She had severe side effects, fatigue, nausea, and whole body pain from it. 
    Shortly after starting the Xeloda other side effects or symptoms of her now stage IV breast cancer started to show. Mainly fluid build up in her lungs. At this point she had reached the point where the treatments weren't working, and were making her life unbearable. This is the point where all cancer patients hope we never reach, the decision to stop treatments. 

    Her care shifted to comfort at that point. The news of this change was devastating to all of our family. Many of us said things like, "this can't be happening", or "why is this happening", and "she doesn't deserve this".  
    Our family made the 6 hour trip to visit her one last time before what we all new was coming could happen. We were greeted by that great big smile of hers when we walked into her room. She didn't know who all would be coming to visit, the look on her face was priceless. Even while facing eminent death, she was still the sweet, kind, beautiful Adrienne that we all knew. 
    We visited and talked about various things, in between her spells of drifting off to sleep, and trying to fight off some of the signs that her cancer was attacking her and trying to take her. She even would laugh at some of the things we talked about, still smiling. 

    Our first visit was on that Sunday. After being glad that we were able to see her and have cherished conversations with her, we spent the night in a local hotel. The following morning we went back for one last visit, one more chance to hear her sweet voice and see that beautiful smile one last time. During this last visit the fact that this was the last time we would ever talk to and be in her company again began to loom over us. 
    At some point you have to go, you have to leave the room knowing that this beautiful person was going to soon die and we would never be able to see her again. What do you say to someone that is dying? How can you wrap up everything you would like to say and how you feel in a few sentences? If you have never had to do this, trust us, it's one of the hardest things you will ever do.
    She was positive even in her last days knowing that she was dying. She told everyone not to say goodbye. But to say 'until we meet again". So, that was our final words, I love you, and we will see you again. 
    We left her that Monday to drive home, then Tuesday morning we received the news that she had passed on. 
    So cancer steals another one from us. But in addition to stealing a loved family member, she didn't get to see one of the boys all decked out for his prom, it also stole her being able to witness her sons graduations from her. Her boys won't be able to see the pride and love in her eyes as they walk down the isle at their weddings. She won't be there as they go through life and will no doubt ask "what would Mom do". It has stolen her smile from everyone in her life, from family and friends, to her work family and even those she touched that she never knew, and there were hundreds, if not thousands. 

    Her funeral service was attended by hundreds, a testament to her personality, her magnetic outgoing way of living her life and the love that everyone had for her. 
    We have known many cancer patients that have been taken from us, some family, some friends, and some distant acquaintances. This one was different. This person was special in so many ways. This one hurt more. 
    To Jeremy, Grant, and Zach, we don't know how you'll get by without her because it's going to be hard for all of us, we can't imagine your state of mind at this point. Remembering her beautiful smile will surely help. We wish you the very best. 
    Cancer continues to suck! It steals things from us that we don't think about until they are gone. It cuts families apart, it causes great pain and financial hardships. And sometimes, it snuffs our the brightest smile and ray of sunshine you can find. 
    Until we meet again.  

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    Could a Second Opinion Save Your Life?

    We, as cancer patients, are often advised to get a second opinion. Yet, many of us don’t understand exactly what a second opinion is, how to get a second opinion and how a second opinion might benefit us. Second opinions are particularly important when we are first diagnosed or when our cancer recurs.


    Both my surgeon and my oncologist told me that if I ever had any questions about if a treatment or procedure was right for me that I shouldn’t hesitate to get a second opinion. They assured me that my seeking another opinion wouldn’t offend them. They confirmed an important fact that most of us realize. The treatments for cancer require us to have an extraordinary amount of faith and trust in our medical team because the procedures and drugs sound so scary. Having a second opinion helps us find courage to embark on the recommended treatment.
    What is a second opinion?
    Simply put, a second opinion is obtaining another physician’s recommended treatment plan. They will review our diagnostic tests and imaging scans and provide us with their opinion of how to proceed.
    A second opinion helps a patient gain confidence in their treatment plan. Some patients worry that they need to begin treatment ASAP. Unless a patient has a very aggressive cancer, there is sufficient time to obtain a second opinion so that you can move forward with confidence. It’s best to get a second opinion from a larger, teaching hospital or National Cancer Institute-designated hospital. These facilities treat large volumes of cancer patients and are more likely to offer cutting-edge treatments.
    Why is a second opinion important?
    First and foremost, a second opinion confirms your diagnosis — not only that you have a particular type of cancer but the second opinion
    also provides confirmation of the stage of your cancer and other vital details, including the type of cell and the extent your cancer may have spread. Your second opinion may open new options. If you have a solid tumor kind of cancer (colorectal or lung, for example), surgery might offer a potential cure or long-term remission period. But if your oncologist tells you that you are not a candidate for surgery, you should probably seek a second opinion from a skilled oncology surgeon who specializes in your particular kind of cancer. Specialty surgeons offer the latest surgical procedures to remove tumors that other medical personnel may deem not operable. 


    Newer treatments, including targeted therapy and immunotherapy
    , require additional blood tests. These blood tests determine if you have certain mutations or proteins that suggest that a new therapy might work for you.
    Your second opinion may uncover discrepancies in the interpretation of your staging scans. Having a new set of eyes review your scans can be life-saving. A second opinion may discover an overlooked mass in a distant part of your body, suggesting your cancer has spread. In my case, the oncologist to whom I was referred looked at my staging scans and disagreed with the interpretation — she believed that I had just one cancerous nodule in my lung (not several nodules as the first radiologist believed) — so despite the fact that I was Stage IV, she treated me aggressively, with curative intent.
    MD Anderson reviewed some 2,700 patient cases and found that 25 percent had discrepancies between the original pathologist’s report and MD Anderson’s opinion. 


     If you have a rare cancer or a cancer known to be aggressive, a second opinion from a high-volume cancer treatment facility will probably offer you more treatment options.

    When it comes to cancer, getting the most effective treatment the first time is a patient’s best way to ensure treatment success.

    Where and how to get a second opinion?
    Most insurance companies pay for the cost of a second opinion. Call your insurance company and check. Some insurance companies require a second opinion before beginning treatment.
    Decide on where you want to go to get your second opinion. Many larger cancer centers offer online second opinions where your medical records and scans are forwarded — don’t let living in a rural area discourage you from getting a second opinion. The cancer center where you live can administer chemotherapy or radiation locally by working with your second opinion physician (this is not unusual so don’t be afraid to ask).
    Most doctors are accustomed to their patients requesting second opinions and will send your medical records for you. The larger facilities may have a second opinion coordinator to ensure that they have the medical records they need.
    So now what?
    What do you do when your second opinion is different from your first treatment plan? 


    Ask why. Patients and family members must learn to be proactive and ask questions. Ask the second opinion physician why they recommend a different treatment plan. Ask why their plan is a better choice? Ask which part of your test results influenced their decision. Ask which treatment guidelines they used to come to their conclusion. Ask for a written report so that you won’t forget the exact details of the suggested treatment plan. • Ask these same questions to your doctor at home. Once you’ve heard your first doctor’s reasoning, ask if it would be possible for the two of them to discuss your case. • Tie-breaker opinion. Because having the best possible treatment first is so critical, you and your family may have to seek a third opinion from another specialist in the area where the opinions differ. If the opinion varies about which chemotherapy drug to use or whether to have chemo before surgery, consult with another oncologist. If there is disagreement about the use of radiation, consult with another radiation oncologist. If there is disagreement about a pathology report, get another opinion from another pathologist.
    Every patient, whether they seek a second opinion or not, should learn more about the kind of cancer they have and the treatment options. The National Comprehensive Cancer Network (NCCN.org) is an alliance of 28 prominent cancer centers in the U.S. who share their treatment experiences and results to develop treatment guidelines for physicians and patients — their Treatment Guidelines are free to both physicians and patients. You can download your free guideline here.

    To learn more about the NCCN and their guidelines, refer to our blog post about the NCCN. Many WhatNext members credit their survival to getting a second opinion. A second opinion could save your life.


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