Archive for appendix cancer

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.

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.

WTF is “Ovarian Tissue Cryopreservation”?

Visit NBCNews.com for breaking news, world news, and news about the economy

 

 

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)

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.

 

 

 

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. 

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

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!

Fertility & Cancer…

I have met quite a few parents whose children are cancer survivors.  And their journey’s have some major similarities.  First, their child was suddenly diagnosed with cancer and literally started chemotherapy the very next day.  Secondly, in each instance, the oncologists never discussed the longer term affects that cancer treatments can have on fertility.  And third, once the families realized the impact, they wished they had understood this before starting treatment because there are options to help avoid the possibility of losing the ability to have children due to cancer treatments.

 

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

Infertility is often a complication for adolescent and young adults who receive cancer therapy.  And while parenthood may not be top-of-mind for many teens or young adults (understandably), the possibility of losing the ability to have children due to cancer treatments is concerning to many families.  But there are options….

 

First, if you know of an adolescent or young adult who has been diagnosed with cancer, let the appropriate people know that this is a topic they should discuss with their doctor.  Even if they have already begun treatment, there may still be options for sperm banking or egg freezing.

 

Second, to get the low down on infertility & cancer, check out Fertile HopeFertile Hope helps patients get the information they need to make educated decisions before and after cancer treatments- from understanding their fertility risks to fertility preservation techniques (sperm banking, egg & embryo freezing) to understanding what parenthood options exist after cancer.

 

Now these options can very quite expensive.  Fertile Hope also assists patients financially in these endeavors through their Sharing Hope Financial Assistance Program.  Additionally, through their website, you can access link for information on adoption assistance, insurance coverage and other programs that can provide assistance with fertility treatments.  Fertile Hope is a GREAT resource to help navigate the fertility aspect of cancer.  Check it out….

More On the Chemo Bath… direct from survivor Laurie Todd

Meet Guest Blogger Laurie Todd... Laurie is an amazing author, teacher, and insurance strategist.  In 2005, she was diagnosed with late-stage appendix cancer. Laurie was told by her oncologist, “There is no treatment for your disease. And, even if there were, they (meaning the HMO) won’t pay for it.”  Laurie is not the type to just sit there idly and take that.  And she sure as heck wasn’t going to allow herself to die because her insurer didn’t want to pay for something.  Not only did Laurie find a doctor who performed what some consider a radical yet lifesaving treatment, she also persuaded her insurance company to fully cover the cost. The cost for this extensive surgery and chemotherapy totaled $345,000 (and that was in 2005). Her share? $9.

 

Fast forward to today, Laurie Todd, Appendix Cancer Survivor Extraordinaire, is also known as THE INSURANCE WARRIOR.  She works with patients to get their insurance companies to cover life saving medical procedures and so far, Laurie has won more than 85 appeals.

 

I “met” Laurie through ColonTown, a Facebook community of colorectal cancer survivors, where  I posted information on Chemo Baths.  BTW, Laurie refuses to call this procedure by it’s nickname… It’s called hyperthermic intraperitioneal chemotherapy (HIPEC).  In any case,  the information Laurie shared on this site was incredible…. after all,  she credits the fact that she is here today, 6 years later, because of Dr. Paul Sugarbaker, cytoreductive surgery and HIPEC.  This saved her life!

 

Laurie says this….

“There are a few things one should understand about the HIPEC. First of all, there is no such thing as HIPEC without cytoreductive surgery (CRS) — it is a combined modality treatment. The main reason why so many of us do so well is the surgery, not the HIPEC. This is a surgery which can go on for 12-20 hours — painstakingly stripping out the abdominal wall (peritoneum) and cleaning out the entire abdomen.

A true cytoreductive surgery is equal in complexity to separating conjoined twins. We (the patients) do well because of the skill and dedication of that particular surgeon.  The HIPEC is merely the icing on the cake — eradicating the microscopic cells that remain.  Without a complete cytoreductive surgery, HIPEC is of no use.  The sooner in the disease process that we get it, the more likely that we will do well.  This is a curative treatment.

Secondly, cytoreductive surgery is nothing new. It was pioneered by Dr. Paul Sugarbaker in 1979 when he was Chief of Experimental Colon Cancer Surgery at NIH.  Dr. Sugarbaker alone has performed over two thousand of these surgeries, and documented his outcomes in 683 peer-reviewed medical journal articles.  Thousands of patients with appendix cancer, colon cancer, peritoneal mesothelioma, pancreatic cancer and ovarian cancer have had this treatment, with excellent documented outcomes — all over the world– performed by various surgeons.

Another woman I recently met named Norah from Akron, Ohio had her CRS/HIPEC by Dr. Sugarbaker at NIH, as part of a clinical trial back in 1985. Her local doctors had told her to get her affairs in order.  26 years later, Norah is still alive and cancer-free.  I’m not sure why the media likes to shorten the number of years that this surgery has been performed and studied in the U.S. Perhaps it makes it sound more “controversial,” and makes a better story.

I believe there are many reasons why CRS/HIPEC has not gone “mainstream.” Probably the most important reason is that insurance companies have routinely denied it, and doctors around the country who treat cancer patients have not been quick to refer patients for it — partly because it is not always available locally, or in-network for the insurance company.

Over the past ten years — I am guessing because of the Internet — patients have begun finding out about this treatment on their own, and making their way to the surgeons who perform it. As we fight insurance companies time and again for this treatment, it becomes a bit easier over time to get it paid for. The same is true of other lifesaving treatments for which I have written appeals — patients are leading the way.  My passion is persuading insurance companies to practice evidence-based medicine. I come with mountains of scientific evidence. Often, there is no scientific evidence for the treatments that insurance companies routinely offer.  I am here to say that the insurance company does not always know what is best for us.

I once compared two medical policy statements of two different BC/BS companies for HIPEC. One policy was negative — HIPEC is “experimental.” The other policy was positve — HIPEC is “standard of care.” Guess what? Both of the opposing medical policies used the same thirty-two scientific articles to prove their point. What does that say about medical policy statements? The emperor has no clothes.

If I believed what the Chief of Oncology at my HMO said, I wouldn’t be here right now reading these scientfic articles.  Those of us with appendix cancer dearly wish that our first surgery had been the most definitive treatment — cytoreductive surgery with HIPEC. I wish that also for those with colon cancer, ovarian cancer, and peritoneal mesothelioma. If I keep being the pest out here … maybe some day a few of us will get referred sooner in our process.”

Switch to our mobile site