Archive for testicular cancer

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.

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.

 

Immunotherapy Clinical Trial Finder

cancer-and-immune-system1

 

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.

5 Reasons Why I LOVE Champions Oncology

I’ve had the pleasure of working with some of the organizations I write about in this blog; others I wish I had known about during our “cancer journey”; and still others, although not relevant to Alan’s cancer are fantastic resources that can help others in their fight against cancer.

 

Champions Oncology is one of the organizations that we were lucky to find.  Their co-founder Dr. David Sidransky is one of the smartest and most dedicated cancer warriors I know.  They are doing great work to help fight cancer… one person at a time.  Watch the YouTube video above and read what I’ve written below to see why I’m a huge fan of Champions… Below are my Top 5 Reasons…

 

5.  Personalized Oncology is the future of cancer care.  Two people with the exact same cancer can and do respond differently to the exact same treatment regimen.  I wish I had understood this at the beginning of our cancer journey. Read this article from the NY TIMES on how Champions is the ultimate in personalized medicine.

 

4.   Champions organized a “panel” of 13 sarcoma experts (doctors, surgeons & researchers too).   The Panel met, discussed & debated Alan for over two hours.  They built consensus and came up with a plan of action… a plan that we could never have otherwise obtained, even if have if we had visited each of the professionals individually.  BTW, the plan they came up is the only one that actually slowed the growth of Alan’s cancer.  See Reason #2.

 

3.  No Dr. Schmucks Allowed!  Doctors are people, just like you and me.  And at the end of the day, you have to trust your doctor.  But here’s the dealio (as my daughter always says)… Not all doctors are created equal.  And finding the GOOD ones is not always easy.  Alan and I met and worked with quite a few Dr. Schmucks during our cancer journey and some of them were the “Chief of This & That” at major hospitals.  But I can honestly say that every single medical professional that we worked with through Champions Oncology was brilliant and compassionate and they got “it”… as long as there is life, there is hope.  No giving up allowed.

 

2.  Tumorgrafts REALLY WORK… no ifs, ands or buts about it…  Champions implants your tumor into genetically-stripped mice and then they test different drugs and drug combinations to see what works.  If a treatment works in the mice, it can work in your body.  It’s like your own personal clinical trial.

 

1.  They gave us realistic hope.  By the time we found Champions, we were running out of time.  They were both honest and cautiously optimistic with us. If they could find a drug regimen that would slow down or better yet, kill this cancer (which they have been able to successfully accomplish in other patients), we’d have more time together and maybe, just maybe, live happily ever after.  Although our story did not have the happy ending we dreamed of, I know that we did everything humanly possible to save Alan.  And because of this knowledge, my family and I sleep at night knowing we left no stone unturned.

 

 

 

Questions EVERY Cancer Patient Should Ask Their Doctor…

Most people have heard the terms “molecular profiling”, “biomarkers” and “personalized medicine”.  But what exactly do these terms mean and how can they affect a specific person’s cancer treatment?

One of the best resources I’ve found to explain these concepts is MyCancer.com.  It was created specifically for cancer patients and their caregivers by Caris Life Sciences® and Caris Target Now.  Check it out! 

Another important feature on the MyCancer.com website is the list of questions that EVERY cancer patient should ask their doctor.  Why?  Because taking a personalized approach to treating each person’s cancer is the best shot we have at successfully treating each cancer.  So please… Print it out… Pass it on to anyone you know who has cancer.  Knowledge is power… Share the power!

MyCancer.com – Questions to Ask Your Doctor

Check Your Balls Boyz….

Did you know that….

* Testicular Cancer is the most common form of cancer in men age 15-35.

* 1 guy every day dies from testicular cancer.

*  Men themselves, not doctors, find most testicular cancers as a painless lump or an enlargement or hardening of the testicle- which is why regular self-exams are so important.

*  Testicular cancer is one of the easiest to treat cancers… when it’s caught early.

If you do notice any lumps or changes it is important to see a doctor or better yet, a urologist immediately.

(source: SingleJingles.org)

Other warning signs may include:

  • Any enlargement of a testicle
  • A significant loss of size in one of the testicles
  • A feeling of heaviness in the scrotum
  • A dull ache in the lower abdomen, back or in the groin
  • A sudden collection of fluid in the scrotum
  • Pain or discomfort in a testicle or in the scrotum
  • Enlargement or tenderness of the breasts
For more information on testicular cancer, check out www.singlejingles.org and www.testicularcancersociety.org- these guys will literally help you every step of the way- from learning how to self-check to what to do should you be diagnosed… they ROCK!

 

 

GR8 Resources to Help with Testicular Cancer…

Did you know that although testicular cancer is “rare” (accounting for about 1% of all male cancers), it is the most common form of cancer in men ages 15-35?

If you’ve been diagnosed with testicular cancer and would like some help figuring out next steps, or if you want to learn how to do a monthly self-check of “the boyz”, you’ve got to check out these AMAZING organizations:

 

Testicular Cancer Society  

The Testicular Cancer Society will help you find the best doctors for your particular situation.  They will help you evaluate your treatment options.  They will literally hold your hand and help you in any way they can.  Just contact their founder Mike Craycroft at mike@testicularcancersociety.org.  BTW, I LOVE the “Just Diagnosed. Now What?” section of their website.

 

 Single Jingles

Single Jingles has a network of testicular cancer survivors and partnerships with other survivor groups across the country.  They help make support possible from almost anywhere.  Regardless of where you are in your journey, you don’t have to go it alone. Contact them and they will hook you up or point you in the right direction.  Single Jingles has created a FREE App showing men how to do a Monthly Self Check of their testicles- that’s right boys, you should be checkin’ your boyz every month when your in the shower. Download Single Jingles’ FREE App HERE

 

 


 

 

What’s the Dealio with The Cancer Treatment Centers of America?

Patients ring this bell to signify the completion of their radiation treatments.

 

I’ve learned that for better or worse, when it comes to cancer, things rarely are as they appear to be.  After all, cancer is tricky.  And each person’s cancer is unique to them.  The treatment regimen that works for one person may or may not work for another person.  Test results (again for better or worse) often times come back differently than expected.  That’s just the nature of cancer.

 

But there is something in the world of cancer that truly IS what it appears to be… The Cancer Treatment Centers of America (CTCA).  CTCA practices personalized cancer care with an integrative team approach, and they do anything they can to make the journey a little easier and a little lighter, with the hope of making the end result more successful.  I have to say that I was really impressed (a feat not easily accomplished might I add) after spending 2 days at their Phoenix Center.

 

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

A couple of MAJOR things really impressed me:

CTCAwill fly the patient & caregiver out to one of their 4 (soon to be 5) facilities for an initial consultation FREE of charge.  And CTCA arranges & pays for all travel expenses for the patient for all subsequent treatments & appointments.

 

*  Every patient at CTCA gets a team of at least 5 professionals assigned to care for them including a medical oncologist, clinic nurse, registered dietitian, naturopathic clinician and nurse care manager.  Of course, surgical specialists, radiation oncologists, gastroenterologists, etc. will also become part of the team if their areas of expertise are required.  And get this, they all talk to each other and create a joint plan of action together.  Each doctor and specialist comes to your waiting room.

 

CTCA takes a personalized approach to treating cancer.  They will run genetic and biomarker testing on tumors when needed.  They will prescribe off-label drug treatments (drugs that are not part of the standard protocol) if the standard of care is not doing the job.  Of course, there needs to be evidence supporting it’s use though.

 

*  Anyone who has undergone any sort of cancer treatment knows that finding satisfying foods that nourish the body can be a huge challenge.  According to the American Cancer Society, approximately 20% of cancer patients die from malnutrition.  CTCA chefs & nutritionists work with patients to make sure they stay nourished with made-to-order smoothies (Detox Delicious is my favorite GREEN smoothie) and healthy meals made from 100% organic ingredients that rival some of the finest restaurants. (It ain’t typical “hospital food” that’s for sure).  Plus special dietary needs will be accommodated.  Oh, there’s Starbucks coffee too.

 

* CTCA accepts most insurances (not medicare or medicaid though).  All costs are pre-determined so there will be no surprise charges.  Acupuncture, reiki, chiropractic and other mind-body work are included, even if these services are not covered by your insurance carrier.

 

* CTCA offers cutting edge, treatment options and state-of-the-art technology (Cyberknife, TomoTherapy®, Cord Blood Transplants, Calypso® 4D Localization System™/GPS for the Body® genetic & molecular profiling & much more).

 

* Then there’s tons of other super nice amenities offered including:  on-site pharmacy; on-site boutique specializing in wigs, head shavings, head coverings & mastectomy products- all sold at 30% below retail; on-the-premises spa;  visiting hours are 24×7; really nice hospital rooms that are ICU-capable and nearby subsidized hotel rooms for approximately $40 a night; massage & pampering for caregivers; only green products are used to clean the center; all medical records & results are 100% digital; really nice infusion bays; pet therapy dogs, free laundry services; the list goes on and on.

* Once active treatment is complete, CTCA Survivorship Program lends support to survivors as they get back into the swing of things.

THE BOTTOMLINE:  CTCA treats every patient as a person, not a number.  They take personalized cancer care to a new level…

p.s.  The President & CEO of CTCA Phoenix is an 8 year sarcoma survivor… how fabulous is THAT!

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