Archive for leukemias & lymphomas

Adult Survivors of Pediatric Cancer: Get the 411 on Late Effects of Cancer Treatments

 

Thanks to advances in early detection and better treatment regimens, survivors of childhood cancers often go on to live full and productive lives.  However, the same treatments that cure cancer can also put survivors at risk for future medical problems.  Such health problems, known as “late effects“, can occur months or years or even decades after successful treatment has ended.   

FACT:  In a large study of adult survivors of childhood cancer, researchers have found that more than 95% suffered from a chronic health condition by the age of 45, including pulmonary, hearing, cardiac and other problems related either to their cancer or the cancer treatment.

FACT:  The chances of having late effects increases over time so the older you get, the more likely you are to experience health problems.  Risk factors vary depending type of cancer originally treated, location & size of tumor(s), treatment regimens utilized as well as other patient-related factors.

FACT:  Survivors need proactive, clinical health screenings and ongoing, specialized follow up care. Regular follow-up by health professionals who are experts in finding and treating late effects is key.  The exams should be done by a health professional who is both familiar with the survivor’s risk for late effects and can recognize the early signs of late effects.

 

If you are an adult survivor of pediatric cancer, take a look at these RESOURCES that focus on late effects of cancer treatments:  

* Survivors Taking Action & Responsibility (STAR) program at the Lurie Comprehensive Cancer Center of Northwestern University is a comprehensive long-term follow-up program specifically created for adult survivors of pediatric cancer.   STAR is one of several programs in the country to offer this specialized service.  Here, annual check ups are tailored to each patient and may include a heart ultrasound, a battery of blood tests, a mammogram, a chest MRI, a session with a counselor as well as many other diagnostic tools.

I also LOVE their GET EMPOWERED: A video education series for childhood cancer patients and survivors.  Topics include the impact of childhood cancer on adult survivors, making the transition to adult health care, cardiac risk factors, fertility, finding a “new normal” and navigating the emotional side of survivorship.

*  Another great source of information is The Children’s Oncology Group’s Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers.  Talk to your doctor(s) about these guidelines.

 

*  Beyond The Cure has a very informative website that provides detailed information about the late effects of a cancer diagnosis and treatment involving all aspects of survivors’ lives. To help analyze late effects specific to your diagnosis and treatment, check out their Late Effects Assessment Tool.

*  My Heart Your Hands was created by 2 adult survivors of pediatric cancer.  Their mission is to not only raise awareness of the potential late effects of cancer treatments, but to also equip survivors with information and tools they need to manage their follow up care.  Check out their listing of Late Effects Clinics located throughout the US or listen to founder Stephanie Zimmerman’s story.

 

Remember, the more you know about the possible long-term effects, the better prepared you will be to meet any challenges the future may bring.

If you know of other survivorship resources that focus on late effects of cancer treatment, please post them below.  Knowledge is power.  Let’s share the power!  

 

(sources:  Natl Cancer Institute; The STAR Program; WSJ.com)

Applying for Social Security Disability Benefits with Cancer

 

Meet GUEST BLOGGER Ram Meyyappan. Ram is the senior editor and manager of the Social Security Disability Help website.  Social Security Disability Help contains information on how to apply for disability with over 400 conditions, helpful tips, FAQs along with an extensive disability glossary.

 

If you are a parent suffering from any type of cancer, the condition or the effects of the treatments you are undergoing may make it difficult to take care of your kids, let alone returning to work. In such cases, financial assistance may be available through one of the two Social Security Disability programs. There are two disability programs available to those who qualify under the SSA’s disability criteria. These include the SSI (Supplemental Security Income) program and the SSDI (Social Security Disability Insurance) program.

SSI

SSI is a needs-based program. In order to be eligible, you must be deemed disabled by the Social Security Administration and you must meet certain financial criteria. As of 2013, to qualify for SSI, you must not earn more than $710 as an individual or $1,060 as a couple. You must also not have assets that exceed $2,000 as an individual or $3,000 as a couple.

SSDI

Unlike SSI, SSDI is not a needs-based program. There are no financial criteria to meet. You must, however, have earned enough work credits through your previous work history. In order to have enough work credits to qualify for SSDI, you must have worked five of the past ten years. If you are not old enough to have worked five of the past ten years, you need to have worked half of the time you were able to do so.

Cancer and Meeting the Medical Requirements

The SSA uses a manual called “the blue book” to evaluate whether or not a condition qualifies for disability benefits. Cancer is covered in Section 13 of the SSA’s blue book under Malignant Neoplastic Diseases. Just being diagnosed with cancer alone does not mean that you will qualify for benefits unless it is a type of cancer that is listed in the compassionate allowances program. In most cases, the cancer has to be inoperable, have distant metastases (has spread), or be recurrent after surgical procedures or irradiation.

You will need to prove through your medical records and work history that your cancer prevents you from working at the job at which you were previously working or any other job for which you are qualified.

Qualifying Under the Compassionate Allowances Program

Certain types of cancer can qualify for Social Security Disability benefits in less than two weeks under the SSA’s Compassionate Allowances program. Under this program, individuals who are suffering from very severe conditions can bypass the standard disability claim process and be approved for benefits a lot faster. You will need a physician’s opinion stating that the cancer is not operable or an operative note stating that the cancer was not completely resected in order to qualify under this program. If an operative note is not available, a pathology report indicating positive margins can be used. When applying for benefits, make sure you include this medical documentation and make it clear how you qualify for benefits under the Compassionate Allowances guidelines.

There are numerous cancers that are listed in the compassionate allowance program. For a complete list of all compassionate allowances conditions, please visit: http://www.disability-benefits-help.org/compassionate-allowances.

How to Apply for Social Security Disability Benefits

You can apply for Social Security Disability benefits online or in person at your local Social Security office. Make sure that you have all of the medical evidence that you will need at the time of your application. While the SSA will have you fill out forms that allow them to request copies of your medical records, it is always best to submit medical records on your own as a part of your application to ensure that the SSA receives complete documentation that supports your disability claim.

FREE Kit to Help Manage Side Effects from Chemotherapy

A sample of an Adult Comfort Kit

A sample of an Adult Comfort Kit

We all need a little love once in a while… and if you’ve been diagnosed with cancer and are receiving chemotherapy, you deserve a little extra lovin’. That’s what Peppermint & Ginger Comfort Kits are all about…

 

Peppermint & Ginger Comfort Kits are FREE kits created to help provide comfort and help alleviate some of the more common side effects caused by chemotherapy.  An “Adult Kit” contains peppermint and ginger teas (which can help ease nausea), a soft bristle toothbrush, alcohol free mouth wash and toothpaste and lip balm (to help ease oral side effects experienced as a result of treatment), warm socks and a relaxation CD.  When possible, P&G adds in other goodies as well.  Their “Pediatric Kit” contains hot chocolate instead of teas and it’s contents will vary depending on the age of the patient.

 

If you know of a cancer patient receiving chemotherapy or if you yourself are a patient and would like one of these comforting kits, please click HERE to request one.

Covering the Cost of a Bone Marrow Transplant

 

Approximately 50,000 blood and marrow transplants are performed worldwide each year to treat children and adults with over 70 illnesses.*  The emotional aspects of a transplant can be overwhelming (understatement of the century) and the financial burden can be devastating as many patients find their insurance does not cover all of the costs related to a bone marrow transplant.

For financial assistance as a result of needing a bone marrow transplant, check out these programs below:

  • The Bone Marrow Foundation has created a Patient Aid Program that provides financial assistance for donor searches, compatibility testing, bone marrow or stem cell collection, cord blood banking, medications, medical equipment, home and child care services, housing, transportation and other patient needs.

 

  • The Bone Marrow Foundation also offers One-to-One Funds as a resource that patients can use to raise money to cover the cost of their care. Funds are created for specific patients.  Community, family and friends can donate money for that patient’s transplant expenses.  The Bone Marrow Foundation administers these funds directly to the patient (minus a 5% fee to administer the fund).

If you are interested in setting up a One-to-One Fund for a transplant patient, please review their guidelines and complete this application form. A social worker will contact you to discuss your (or the patient’s) needs and the next steps in the One-to-One Funds process.

 

  • If you are pursuing a transplant through Be The Match, you may be eligible for their financial aid programs.  Funds from these programs can help pay for the cost of a donor search as well as some post-transplant expenses.  Ask your health-care provide or transplant specialist if you qualify.  For additional questions, call Be The Match Patient Services directly at 1 (888) 999-6743.

 

(* Source:  BoneMarrow.org)

FREE Wigs for Cancer Patients Living in Des Moines, Iowa

 

If you live in Des Moines, Iowa and have lost your hair as a result of cancer treatments, check out Strands of Strength.  Strands of Strength provides FREE quality wigs to cancer patients- men, women or children- regardless of age or type of cancer – who live in Des Moines, Iowa and who could not otherwise afford a wig.

 

Here’s the dealio (as my daughter always says)…  

Strands of Strength works closely with medical professionals at Iowa HealthBlank Children’s Hospital and Mercy Hospital.   These hospitals will provide patients in need a voucher slip for a free wig.  

Patients can then choose any wig they like from any Strands of Strength-approved wig shop.  The voucher represents payment to the shop.  It’s as simple as that.

For more information, visit StrandsofStrength.com or contact Deb at deb@strandsofstrength.com or via phone at (515) 240-5843.

 

New Options for Treatment-Resistant CML & One Type of ALL

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The drug Gleevac has been hailed as a life saving treatment for certain types of leukemia.  However, just as no two people are alike, no two cancers are exactly alike.  For some people, their cancer is resistant to certain treatments.

 

Good news though… The FDA has recently approved 3 new treatment options for patients with chronic myeloid leukemia (CML) or acute lymphoblastic leukemia that carries the Philadelphia chromosome (Ph+) whose disease is resistant or intolerant to Gleevac.

 

For these patients, newly approved ponatinib (Iclusig), bosutinib (Bosulif) and omacetaxine (Synribo) offer hope as an effective treatment option.  These new drugs work by thwarting treatment-resistant mutations (ponatinib and bosutinib) or by stifling creation of an aberrant protein (omacetaxine).

 

For more information on these drugs, their contraindications, or assistance in paying for them, check out Chemo101.  If you’ve been diagnosed with chronic myeloid leukemia (CML), check out the National CML Society, an incredible, one-stop resource for anything & everything related to CML.  Knowledge is power…

 

 

 

 

 

Immunotherapy Clinical Trial Finder

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Immunotherapy is a type of cancer treatment that boosts the immune system’s fighting defenses to help the body destroy cancer cells.  Many clinical trials testing new and potentially promising “immunotherapies” are currently enrolling cancer patients in the United States and abroad.  To learn more about immunotherapy clinical trials or to find a trial that might be right for you, check out The Cancer Research Institute’s Clinical Trial Finder.  Here’s how it works:

 

  1. Select a cancer type.*
  2. Fill out CRI’s simple request form.
  3. Within 3 business days, you will be emailed a list of trials that you may be eligible for.
  4. Take the results to your doctor to discuss; contact the clinical trial sites/research teams directly; and/or contact the Clinical Trial Institute at clinicaltrials@cancerresearch.org for more information or for help interpreting your results.

* Current cancer types include:  Brain CancerBreast CancerCervical and HPV-Related CancersColorectal CancerLeukemiaLiver CancerLung CancerLymphomaMelanomaMyelomaOvarian CancerPancreatic CancerProstate CancerSarcoma and Bone CancersStomach Cancer.

If your cancer type is not listed, send an email to clinicaltrials@cancerresearch.org with information about your cancer type, stage and treatment history, as well as your location.  They see if there are any matches.

WTF is “Ovarian Tissue Cryopreservation”?

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For younger women diagnosed with cancer, the same treatments that are designed to save their lives can damage their ovaries and render them infertile.  However, there are options available to help preserve fertility.

 

For some female patients, egg & embryo freezing is one option if done before treatment begins.  For other women with aggressive cancers or hormone-sensitive cancers, this is not an option.  Women with aggressive cancers may need to start treatment immediately and don’t have the 3-6 weeks needed to harvest eggs.  Women with a hormone-sensitive cancer can not have their ovaries stimulated as this process can exacerbate the cancer.

 

For these women (those who can not harvest & freeze their eggs), there is an experimental option called “Ovarian Cryopreservation.”  Dr. Kutluk Oktay, director of the Institute for Fertility Preservation/Reproductive Specialists of New York explains it like this… “Ovarian cryopreservation is a procedure where, when a woman is faced with a medical condition that would affect [her] future fertility, the ovary is removed through a keyhole procedure and it’s taken through a specialized process which involves treating the tissue with antifreeze substances and utilizing an automated process to preserve the ovary for future use.”

 

How does this new ovary-freezing procedure work?

According to Dr. Oktay, doctors first remove the ovary and then, once a woman has completed cancer treatment, transplant the tissue back into the abdomen – or even under the skin. Once transplanted, the ovarian tissue will be able to turn its supply of immature eggs into viable ones.  The procedure takes about 40 minutes and can be done under local anesthesia.

 

Ovarian Tissue Cryopreservation is not recommended for young women with ovarian cancer, leukemias or lymphoma.  This process also potentially lends itself putting cancer-tainted tissue back into a patient who’s been cured.

 

Got more questions?  Connect with Fertile Hope - they help cancer patients get the information they need to make educated fertility decisions before and after cancer treatments- from understanding fertility risks to fertility preservation techniques to understanding what parenthood options exist after cancer.  (Fertile Hope is a national LIVESTRONG initiative)

got Chronic Myelogenous Leukemia? get to The National CML Society

 

The National CML Society is an INCREDIBLE- and I mean TRULY INCREDIBLE- resource for anyone diagnosed with Chronic Myelogenous Leukemia or CML  (also known as chronic granulocytic, chronic myelocytic, or chronic myeloid leukemia).  

 

CML is one of the more rare forms of leukemia that can go undetected for great amounts of time with no acute symptoms.  As with most rare cancers (or any disease for that matter), figuring out the best way to manage this can be super tricky.  The National CML Society will help anyone touched by CML navigate this rare form of leukemia.  Some of the FREE services they offer include:

  • Ask the CML Experts portal - which enables patients &/or caregivers to interact with top medical professionals who specialize in CML (It’s so important, especially with rare cancers, to work with doctors that specialize in that particular disease.)  
  • CML Connection helps patients and caregivers find & build support in their local area
  • Provides info on the latest treatments & clinical trials just for CML
  • Connects newly diagnosed patients with other survivors
  • Provides assistance when applying for Patient Assistance Programs (programs run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine)
  • Helps sponsor blood and bone marrow drives

Thanks to modern medicine, CML is quite treatable today and many survivors can live full and productive lives.  The National CML Society is a one-stop-shop for everything (or most everything) CML-related.  BTW, their founder Greg Stephens is one of the kindest, most dedicated cancer warriors I know. ;-)

 

FREE Fertility Medications for Female Cancer Patients

 

If you are a woman of reproductive age & a US citizen who has received a new cancer diagnosis and wish to undergo fertility preservation PRIOR to the start of cancer treatment, you can now receive certain FREE fertility medications.

 

Walgreens and Ferring Pharmaceuticals Inc. are collaborating to provide free access to certain fertility medications (specifically Bravelle, Menopur, and Novarel)  and educational resources including informational guides detailing how cancer treatment affects fertility, access to highly specialized nurses, multimedia materials outlining potential fertility options patients may wish to discuss with their physician, and specialized modules to teach injection training.

Have your physician call Walgreens Specialty Pharmacy at 888-347-3415 with a verbal prescription and the medication will be shipped via UPS to either the physician’s office or the patient.  No completion of forms is required.

 

This program is made possible through Ferring’s h.e.a.r.t. BEAT program.  Click here for more information. 

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