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    SITE ANNOUNCEMENT: WhatNext Community Survey

    Hello WhatNext! I wanted to share a community survey that we put together with the help of the team over at Patient Worthy. The survey covers aspects such as what you like best about WhatNext, what could be improved, added, fixed and more. We're also seeking advice from some of our cancer support and patient group partners at Patient Worthy to see what has worked for their communities. This survey will be vital feedback as planning for the future of WhatNext moves forward. We want to make sure we listen to the WhatNext community about what you would like to see on the website. Please take a moment to fill out the survey and let your voice be heard.
    Survey link: https://tinyurl.com/whatnextsurvey

    As always, if you have any technical issues that you need help with, you can also reach me at colby (at) patientworthy.com.

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    SITE ANNOUNCEMENT: New Moderator Introduction

    Hello WhatNext community. I wanted to take a moment to introduce myself. My name is Colby and I'm the managing editor at Patient Worthy, a patient-focused news website. In the weeks since Greg's passing, there has been much discussion behind the scenes about the future of WhatNext and how to best ensure that the website continues to grow. I don't have any final answers for you today, but I did want to let everyone here know that we will be stepping in to help with moderation and site maintenance duties to help keep everything running smoothly. If you have any questions, please let me know and feel free to say hi. Thanks for your time.

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    Ovarian Cancer - Risks and Symptoms

    When we think of ovarian cancer, many of us immediately think of Gilda Radner, the Saturday Night Live actress and comedian, who died of ovarian cancer in 1989. While the treatment for ovarian cancer has greatly improved in the last 30 years, ovarian cancer’s onset is characterized by vague symptoms. Sadly, even in 2020, only 15% of ovarian cancer is diagnosed in the early stages.

    An estimated 21,750 women will be diagnosed with ovarian cancer this year. In the last 10 years, new cases have dropped by 1.6% annually — most probably due to the decrease in the use of hormone-replacement therapy. 

    What is ovarian cancer?
    Ovarian cancer is cancer that begins in the ovary or fallopian tubes. Rarely, ovarian cancer begins in the peritoneum — the serous membrane lining the cavity of the abdomen and covering the abdominal organs. 
    Research now suggests that most ovarian and fallopian tube cancers are high-grade serous cancers (HGSC) that begin in the outer end of the fallopian tube and spread to the outer surface of the ovaries.
      Since ovarian cancer in its early stages only produces vague symptoms, it’s important to know if we have risk factors so we can be extra vigilant. 

    Risk factors include: • Family history – a strong family history of breast and/or ovarian cancer puts women at increased risk. Sometimes, family history is linked to specific genetics. • Genetic mutations – at least 10-20% of ovarian cancer is linked to genetic mutations. The American Society of Clinical Oncology (ASCO) recommends that women diagnosed with epithelial carcinoma (high-grade serous cancers) have genetic testing for several cancer risk genes, including BRCA1 and BRCA2, RAD51, and PALB. This testing should be done regardless of whether there is a family history or not. Women without these inherited mutations should also be tested for BRCA mutations in the tumor cells. There are specific treatments for ovarian cancer that work, regardless of whether this mutation is inherited or not. • Rare genetic conditions – several rare genetic syndromes increase the risk of ovarian cancer, including Lynch syndrome, Peutz-Jeghers syndrome, Nevoid basal cell carcinoma syndrome, and Li-Fraumeni syndrome and ataxia-telangiectasia. • Age. Women over 50 are more likely to develop ovarian cancer. About half of all women diagnosed with ovarian cancer are over 63. • Weight. Women who were obese in early adulthood are more likely to develop ovarian cancer. • Ethnicity. North American, Northern European, or Ashkenazi Jewish heritage are linked to an increased risk of ovarian cancer. • Reproductive history. Mensural periods before the age of 12 and menopause after the age of 51 put women at an increased risk for ovarian cancer. Not having children and unexplained infertility also put women at increased risk. Not ever having taken birth control pills also puts a woman at increased risk. • Hormone replacement therapy. Women who took estrogen-only hormone replacement therapy after menopause are at increased risk.

    Most experts recommend that women with the BRCA1 and BRCA2 mutations, along with women with Lynch syndrome, have their fallopian tubes and ovaries removed after they have had all the children they’ve planned. High-risk women should talk to a genetic counselor to fully understand their personal risks.

    What are the symptoms of ovarian cancer?
    Symptoms of ovarian cancer are vague and aren’t just symptomatic for ovarian cancer — non-cancerous medical conditions can cause these symptoms. The best advice is for any woman who experiences any of the symptoms every day for several weeks to see their gynecologist. • Abdominal bloating • Back pain • Constipation • Difficulty eating or feeling full almost immediately • Fatigue • Indigestion or upset stomach • Irregular menstrual cycles • Pain or swelling in the pelvic or abdominal area • Painful intercourse • Urinary urgency or frequency • Vaginal discharge may be clear, white, or blood-tinged

    Unfortunately, there is no screening test for ovarian cancer. The Pap smear is not for ovarian cancer. Nor is the CA-125 specific for ovarian cancer — the CA-125 level can be elevated for a variety of reasons that are non-cancerous in women of childbearing age. The CA-125 level is more reliable for post-menopausal women.
    September is Ovarian Cancer Awareness Month. The most important takeaway about ovarian cancer is to know if you are at higher risk for ovarian cancer and to see a gynecologist if you experience any of these symptoms daily for several weeks. Early detection saves lives.
    Related Articles

    Ovarian Cancer Experience Video by Carol N.  

    Caregiving - The Toughest Job You Will Ever Ever Have

     Maintaining Hope About Your Cancer While Being Hopeful

    Embarrassing Side Effects You May Have During Your Cancer Treatments 

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    Immunotherapy and Possible Side effects

    Immunotherapy is becoming more prevalent for the treatment of cancer as researchers, through clinical trials, discover more types of cancer that respond to immunotherapy.

    We, as patients, are still a little bit baffled by how medication can turn on our immune system to kill our cancer. We’ve heard, through the grapevine, that immunotherapy treatment is “much easier” than chemo. For most patients, immunotherapy treatments are easier to tolerate, but immunotherapy does have side effects.
    Immunotherapy works by allowing our immune system to “go into high gear” and attack our cancer. But when our immune system goes into overdrive, our immune system may attack healthy cells too — causing side effects that we might not expect.
    What kinds of cancers can now be treated with immunotherapy?

    While there were limited-use immunotherapy treatments before Keytruda’s approval in 2014, Keytruda, the first immune checkpoint inhibitor, is the immunotherapy drug that led the way to the development and approval of many new immunotherapy drugs.
    • Bladder • Breast • Cervical • Colorectal • Esophageal • Head and Neck • Kidney • Leukemia • Liver • Lung • Lymphoma • Melanoma • Prostate • Skin cancer

    Not every patient with these types of cancer is eligible for immunotherapy treatment. Immunotherapy treatment is dependent on the genetic components at the cellular level, if our cancer has progressed and how far, and what other treatments have been used.
    What are the potential side effects of immunotherapy?

    What most patients like about immunotherapy is that side effects don’t occur as often and aren’t usually as severe. Most side effects occur within the first few weeks of treatment, but they can also occur later in treatment or even after treatment ends. Because some of immunotherapy’s side effects can be severe, it’s important to let your oncologist know if you develop new symptoms.
    1. Diarrhea. Diarrhea is usually a sign that the immunotherapy treatment has caused inflammation in the gastrointestinal tract. Patients may see blood or mucous. Patients should let their oncologist know because frequent and severe diarrhea can cause dehydration and, possibly, an electrolyte imbalance. 

    2. Flu-like symptoms. Immunotherapy jumpstarts our immune system, similar to when we get our annual flu shot. We might experience chills and fever, nausea and vomiting, headaches, body aches, and fatigue. These symptoms usually resolve themselves — be sure to call your oncologist for help in managing these symptoms. 3. Rashes and other skin problems. One of the most common side effects is skin problems, including a rash, redness of the skin, or blistering. Mild skin irritations can usually be solved at home with a moisturizing ointment or cream. Severe outbreaks might require a trip to a dermatologist; be sure to call your treatment team if you experience a severe, widespread skin problem. 4. Vague, non-specific symptoms. Our bodies react in all sorts of ways to immunotherapy — joint or muscle pain, loss of appetite resulting in weight loss, irritability or nervousness, bloating, shortness of breath, or fatigue. Don’t assume that any new symptom is “normal,” and that you should just endure it. Always tell your oncologist or treatment team member of new symptoms. Your team wants to help us avoid problems with our treatment so that we continue our immunotherapy treatment.

    Monitoring for Unseen Side Effects

    Some side effects don’t manifest themselves as symptoms that a patient would notice. But our team of doctors monitors blood markers that indicate we might be experiencing internal side effects. They monitor our liver and kidney enzymes as well as all sorts of blood counts to ensure our overall health and well-being while we are on immunotherapy.

    What if my type of cancer is not on the approved list?

    Patients who have experienced progression or a recurrence may be eligible for one of the many clinical trials — some of these trials include immunotherapy in conjunction with chemotherapy or radiation. Talk to your oncologist if you’re interested in trying immunotherapy because your previous treatment hasn’t worked.
    The Bottom Line

    If you are receiving immunotherapy, please sure to write down the name and dosage of your treatment along with the phone number of your treatment clinic. On rare occasions, immunotherapy may cause an adverse event. If you’re out of town and have to go to the emergency room, it’s critical that you can provide the exact name of the cancer treatment that you are receiving to ensure prompt care if your symptoms are related to your treatment.
    Related Articles

     Immunotherapy - The Future Is Almost Here

    Immunotherapy - A Different Way To Treat Cancer

     Chemo in 2020 Versus 1988 - Advancements But Some Things Never Change

     PD-L1 And What It Means In Cancer Treatments

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    Prostate Cancer In The News

    Prostate cancer is the most common cancer diagnosed in men, except for skin cancer. Almost 200,000 men are diagnosed with prostate cancer each year in the US. If prostate cancer is detected early, local or regional stage, the 5-year survival rate is almost 100%. There are an estimated 3 million prostate cancer survivors. 

    September is Prostate Cancer Awareness Month so this is a good time to take a look at news about prostate cancer during 2020. Tolmar Pharmaceuticals, Inc. Increases Production of ELIGARD®
    Leuprolide acetate is used in palliative care treatment of advanced prostate cancer. In mid-July, 2020, the FDA announced that several forms of leuprolide acetate were on backorder and not available.
    Tolmar Pharmaceuticals announced on August 10, 2020 that it was increasing production of ELIGARD® (a form of leuprolide acetate) and confirmed that it has the capacity to fulfill future needs.
    Researchers Find that Cryotherapy Is Effective for Intermediate-Risk Prostate Cancer
    UCLA researchers reported on June 30, 2020 that cryotherapy is an effective treatment for men with Grade 2 prostate cancer. Cryotherapy is an older technique that utilizes extremely cold temperatures to freeze cancer cells, resulting in the death of the cancer cells.
    UCLA treated 61 men, diagnosed with intermediate prostate cancer, with cryotherapy. At both six and eighteen months later, 80% of these men had no sign of cancer.
    Cryotherapy is not yet widely available, and further studies are planned for this less-invasive treatment.
    Large Study Shows that African-American Men Have Genetic Differences within Their Tumors African-American men are more likely to develop prostate cancer than men of other races. Until now, little was known about why black men were more likely to have prostate cancer. One in six African-American men will be diagnosed with prostate cancer in their lifetime. They are twice more likely to die from prostate cancer than other men.

    A large study conducted at Boston University School of Medicine (BUSM), UC San Francisco (UCSF), and Northwestern University identified genetic differences but also discovered genetic similarities between men of European descent and African-American descent.
    The researchers found that the newly-released PARP inhibitors should be equally effective for African-American men as for men of European descent. Although African-American men have genetic differences, the researchers pointed out the need to include African-Americans in molecular studies to understand any racial differences that occur.
    New Guidelines Announced for Advanced Prostate Cancer
    The American Urological Association (AUA), American Society for Radiation Oncology (ASTRO) and Society of Urologic Oncology (SUO) announced new guidelines for the treatment of advanced prostate cancer on June 25, 2020.

    Since more than 33,000 men die annually from advanced prostate cancer, new guidelines that reflect new advances in treatment are significant and can lead to improved quality of life and a longer life.
    These guidelines can be seen here. NOTE: There are 38 new guidelines. Many of these are rather complex, but for patients who want to become familiar with their options if they have metastatic prostate cancer, this is an excellent reference.
    New Vaccine Offers Hope for Men with Advanced Prostate Cancer

    ImmunSYS announced in June 2020 that their YourVaccx
    is showing promise for a personalized treatment of advanced prostate cancer. YourVaccx, when approved, will activate the patient’s body to fight their prostate cancer. More testing and trials are needed, but the future is coming. The vaccine works in two steps: first, a portion of the tumor is killed by a cryosurgical surgical technique and releases molecules to the outside of the tumor, activating the body’s immune system to attack the tumor. Then three immunotherapy agents are injected into that tumor to boost the actions of the patient’s immune system against their cancer. This vaccine is being tested in clinical trials.
    We, as patients, don’t often realize how much research is being conducted while we are in treatment to improve outcomes for all patients. The future is being shaped now through research and clinical trials.

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    Tips For Taking Oral Chemo Drugs For Cancer

    Many cancer patients don’t realize many of the 400 chemotherapy and targeted therapy drugs are in the form of a pill, rather than being infused via an IV. When we think of cancer treatment, we think of a chemo room and long days spent getting chemo.

    But times have been a-changing. The first oral chemotherapy pill was introduced in 1998. It is still in use today — it is the oral equivalent of Fluorouracil, usually referred to as 5-FU, a drug used in the treatment of breast, colorectal, anal, and pancreatic cancer. The oral brand name of this first oral chemotherapy agent is Xeloda.
    What are some of the new oral cancer treatments?
    Many of these oral cancer therapies are targeted therapies aimed at patients with specific genetic mutations. These targeted therapies have helped transform the lives of patients who had a poorer prognosis into an improved quality of life and significantly longer survival times.
    • Imatinib (Gleevec) is used to treat newly-diagnosed adult and pediatric patients with Philadelphia chromosome-positive chronic myeloid leukemia (Ph+ CML), some patients with MDS, and patients with gastrointestinal stromal tumors that are C-kit positive. • Gefitinib (Iressa) is an EGFR inhibitor and is used most often for metastatic non-small cell lung cancer. It can also be used to treat breast cancer and in clinical trials for patients with cancers with mutated and overactive EGFR. • Lapitinib (Tykerb) is used to treat breast cancer and other solid tumor cancers that are HER2 positive or overactive EBFR. • Nilotinib (Tasigna) is another oral medication used to treat patients with Philadelphia chromosome-positive chronic myeloid leukemia. It can be used for those newly-diagnosed and for those patients who did not respond to imatinib.
    Several of the newer treatments for metastatic breast cancer are also in the oral form: • Abemaciclib (Verzenio) • Palbociclib (Ibrance) • Ribociclib (Kisqali)

    Based on current research, about one-quarter of cancer treatments in the pipeline could be in the form of a pill.
    Is oral chemo as “strong” and as effective as IV infusions?
    Absolutely. Oral cancer treatments carry the same benefits and risks as the medications that we receive at our cancer center. Because oral cancer-fighting drugs are taken orally as a pill or capsule doesn’t make them weaker or less effective.
    Patients receive special handling instructions from their chemo center nurse or oncologist or the pharmacist who dispenses the prescription. Be sure to follow all instructions carefully and store your cancer medication safely away from any children or pets. What else do I need to know about oral cancer drugs?
    Costs. Because these medications are in a pill or tablet form, they are dispensed by a pharmacy that might be located near your cancer center or could be mail order. Your team should help you coordinate your first order to ensure that you have the medication by the “start” date from your oncologist.

    Oral chemo is costly and has to be paid for at the time that you pick it up or order it online. Contact your insurance company for an estimate of your cost. If the cost is prohibitive for you, call your oncologist and let them know. There are many patient assistance programs for oral cancer medications, but you must let your team know that you need help paying your share.
    Your oncologist might even be like my oncologist. I had to take Xeloda for five weeks during pelvic radiation. My oncologist volunteered before I even thought about asking the cost. She said, “This is really expensive. I’ve already requested financial assistance for you. Someone will be calling you later today.”
    And it was a good thing because the copay for a 5-week supply was just under $800.00. Don’t be embarrassed if you need financial help — virtually every person will need this kind of financial help.
    Handling safety.
    There are several safety tips to keep you and your family safe when you’re on oral cancer treatment medicine at home.
    • Store in the original container — it’s easy to forget the dosing directions, and we don’t want anyone else in our family to mistake them for an over-the-counter pain reliever. • Store in a safe place — out of the reach of children and pets. • Store in a cool, dry place, out of sunlight — not in a tiny bathroom with a shower where it’s hot and humid. • Wash hands before and after taking. • Don’t crush or chew up tablets or capsules.

    Caregivers should not handle oral cancer medications — it’s best to empty the pills into a small container or the bottle cap and give to your loved one. The patient is the only person who should come in contact with the medication. Follow dosing directions carefully.
    We’re on the honor system when we take oral cancer-fighting pills or capsules at home. There is no one to ensure that we take our doses on time, and only we can be sure that we take this critical medicine exactly according to schedule. 

    We should develop a system of checks-and-balances to ensure that we accurately take our oral cancer medication. Here are some ideas.
    • Set up reminders on your smartphone or computer. • Keep a dairy (either handwritten or on an e-calendar), confirming the time we take our pills. • Ask your caregiver, spouse, or friends for reminders. • Call your oncology clinic if you forget a dose, so you know what to do — don’t double up on doses without talking to your chemo nurse, PA, or oncologist. • Don’t take fewer pills because you’re feeling better. • Don’t skip doses or take fewer pills to “stretch” out and make the pills last longer. If you’re having financial difficulty paying for your medication, be upfront, and tell your oncologist. They will be able to get your copay assistance. • Every medications’ dosing instructions are unique. Be sure that you understand. You might take your pills just on the days that you have radiation and skip the weekends. Or you might take your pills for two weeks and have a week off. You must follow your specific dosing schedule.
    Be creative. Do whatever it takes to remember your dosing schedule. You might try putting a monthly calendar on the frig and coloring in the days that you take your pills — two weeks in red for the days you take your pills, and no color for the week that you skip your pills, and then the next two weeks in red.
    The Bottom Line
    Since the pandemic, the use of oral cancer-fighting pills/capsules has increased. Taking cancer treatment via pills or capsules is more convenient and often preferable to in-person visits, but convenience carries responsibility. Be sure to take your oral chemo exactly as directed.
    Related Articles

    Oral Chemo - Advantages and Disadvantages 

    Oral Chemo Conversations on WhatNext

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