Everything Changes - The Guide to Young Adult Cancer

I wanted to share a success story from a commenter on my blog.  Bonnie has posted a lot throughout the Pfizer levoxyl shortage.  I am happy for her that she was able to obtain her levoxyl thyroid medication and wanted to share the comment she left in case it can be of help to you too:

“I was able to get my Levoxyl about a week ago.  I called the customer service number at Levoxyl.com after seeing that all strengths were available on the FDA drug shortage website.  I wanted to verify the March 3rd date and I was told Levoxyl was finished being produced and was shipped out to the wholesalers.  Your pharmacy needs to call their wholesaler to order your Levoxyl.  Last Monday my pharmacy couldn’t order it at first because their wholesaler didn’t have it, then on Wed. of last week I checked with my pharmacy and they could order it and I had it the next day.”

Navigating the red tape of pharma, hospitals, and insurance companies is a big part of being a pro-active patient. For more pro-active patient success stories, please click here to check out the print or electronic version of my book Everything Changes.

UPDATE: As of 2/7/2014, a commenter on my blog states they were able to obtain 100 mcg pills of levoxyl at their Rite Aid pharmacy in Pittsburgh.  They placed the order in the morning and pharmacist had them ready at the end of the day.  Great news.  Scroll down to see the full comment and please leave your comments below once you have obtained levoxyl  in your area too.

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Rumors are flying that levoxyl is now back on the shelves and available for patient purchase.  I want to clarify this speculation and provide the most accurate and up to date information that I am able to find.  Here is the information I was able to gather in conversation with a Pfizer representative on January 31, 2014:

* Pfizer states that levoxyl will resume manufacturing during the first quarter of 2014, meaning January, February, or March of 2014.

* Pfizer has not yet resumed production of levoxyl.

* When Pfizer resumes production of levoxyl, there is some lag time between the production and when it becomes available in a pharmacy.  It must first go through the packaging and resale process.

* Wholesalers must stock up on the product first before shipping it to pharmacies.  Distribution is the role of the wholesalers and not of Pfizer, who is the manufacturer.  Therefore, for example, Pfizer does not know whether CVS vs Walgreens will have the product first.  However, the representative I spoke with said, “There should be no shortage issues once it is readily available.”

* Action Item: Follow this link to the levoxyl website.  You can enter your name and email address where it says: “If you would like us to notify you once we resolve this supply issue, please enter your contact information below.”

I know this shortage has impacted thyroid cancer patients, as well as others with Graves’ disease, Hasimoto’s disease, and other hypothyroid and hyperthyroid conditions.  Hang tight and I will continue to update you on any information I can find.  Also, please leave comments below if you have any additional information pertaining to the manufacturing of levoxyl.

Navigating the red tape of pharma, hospitals, and insurance companies is a big part of being a pro-active patient. To learn tips on how to become a pro-active patient, please click here to check out the print or electronic version of my book Everything Changes.

The Cancer Knowledge Network is a smart online resource for cancer patients and their caregivers.  Their articles for young adults really stand out to me as different.  Their tone is raw and honest without trying to be gritty, cool, sexy, hip, or in your face.  They tackle concerns that are on so many people’s minds and they do it without a shtick, without pander to us being young survivors.

I was excited when they recently asked me to write an article.  It was published today and is title “Cancer and Emotions 101: How to Feel Fear and Not Freak Out”.  I hope you’ll have a read and share it with other survivors and caregivers, young and older.

For more first hand accounts from young patients on how to cope with cancer and fear, please click here to check out the print or electronic version of my book Everything Changes.

The fatigue of cancer treatment made it hard for me at times to watch a movie let alone read a book.  I also often suffered from cancer brain fog and a racing mind from thyroid hormone replacement.  I interviewed in my book, Everything Changes, young adult cancer patients who have ADD like symptoms from chemo brain.  Each of these circumstances can make it hard to follow the content of a great non-fiction tomb or a long novel, and lend themselves well to the cyclical, mind-numbing loop of facebook, youtube, and super trashy reality TV.  At first these can feel like a great salve.  Cancer brings so much stress and checking out from the intensity of life can feel healing.  But there is only so much quick fix social media and addictive reality TV I can take before I start feeling even more depressed about my brain turning into a trash can.

I am a person with intellectual inklings.  I like to read and learn, even when my body and mind aren’t in their prime.  Once while waiting an excruciatingly  long time for test results that would decide if I needed more surgery, I began reading short stories.  They have become my go-to reading ever since.  I have come to deeply appreciate the craft of short stories because every word counts.  No image, plot line, or detail is frivolous.  Everything matters.  This subtle sense of urgency in writing helps to keep my mind more engaged.  There are fewer avenues down which my mind can wander.  I like feeling this sense of focus.  It reminds me that my brain is not shot to hell; I can latch on to content and follow it through.  And, because a short story can be completed in only one or two sittings, I am more apt to remember the characters than if I am constantly picking up and putting down longer fiction.

Alice Munro is my favorite short story author.  Some readers complain that all of her stories begin to sound the same.  I agree, but instead of a detriment, I find it an asset.  I feel as though I am submerged in her world, and while living with the uncertainty and stress of a chronic illness, I am so glad to escape my world and join hers.  I almost cried when this year on my birthday it was announced that she won the Nobel Prize for literature.

If you are new to short stories and don’t know where to start, two very good collections are the O. Henry Prize Stories and the Best American Short Stories.  These are both published yearly and can often be found at your local library.  Also, if you know anybody who subscribes to the New Yorker, ask them to stock pile their old copies for you as each issue has a short story.  The New Yorker is weekly, slender, and the perfect light weight to carry in your bag to chemo or for an extra long wait at your next doctor appointment.

For more practical tips on handling body and mind changes that accompany cancer, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I dug into the archives of my own blog for this post. The first time I posted it, on Thanksgiving four years ago, I received a lot of comments. I thought it might ring true with some of you this year as well:

Before diving into their turkey, most families take time to go around the table and say what they are thankful for.  Not my family.  We are all about the food in the Rosenthal household and we always have been.

This doesn’t bother me.  I come from a very demonstrative family.  We express our gratitude on a regular basis, when it hits us in the moment.  We don’t store it all up for a once a year gratitude fest.

I do have a ton that I am grateful for in my life.  But cancer is not one of these things.  Cancer has lead me to become a less judgmental person.  I listen to others now in a way that I didn’t before.  It has also turned me into a writer.  But I feel pretty confident that I’ve always had the capacity to become a less judgmental person and a writer.  If it didn’t come out through cancer, it would have come out through another, hopefully less painful route.

A lot of survivors say that if given the choice they would chose to have cancer because they are grateful for the changes it has brought to their life.  In my book Everything Changes, I wrote about this issue at the end of my conversation with Greg, a young adult cancer patient in Alabama:

“Had good things come from my own cancer? Yes, talking to Greg in his truck was one of many, but I believed that I was a pretty decent and self-aware person who did not need this horrific experience to make me appreciate the world around me or my role in it. If people needed pain through which to learn life lessons (and I debated whether that was even true), opportunities to open oneself up to suffering abound, and it saddened me that most people do not make themselves vulnerable in this way until they have no other choice.”

My dog, my husband, my mom and dad, my father-in-law, my friends, my health insurance, and a roof over my head are on my list of things that I’m grateful for on a regular basis.  Cancer is not one of them.

What about you?  Is cancer on the list of things for which you give thanks?

To read other perspectives about cancer and gratitude, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I think everyone should get a flu shot, and if you haven’t had one yet now is the time.  The more people are vaccinated, the fewer chances everybody has of contracting the flu and passing it along to somebody who has a compromised immune system.  If you know and love a young adult cancer patient, get a flu shot.  If you don’t know one of us, do it for your elderly grandma, your infant nephew, or just because you care about the well being of a stranger.  Flu shots are not just about protecting yourself, they are about helping to protect your community.

Lots of myths about flu shots prevent people from getting them.  Educate yourself so you can make informed decisions about whether or not to get a flu shot.  Here are some authoritative, reliable resources for learning more about flu shots.

Misconceptions about flu season and flu vaccines 

This CDC article answers questions about whether the flu shot can actually give you the flu, tells more about nasal spray flu vaccines, answers how often you need a flu shot, and much more.

Cancer, The Flu, and You: What cancer patients, survivors, and caregivers should know about the flu

Did you know that if you have had cancer you are at higher risk for contracting the flu?  Learn more about this and other cancer and flu specific FAQs on this CDC page.  Also see the American Cancer Society’s flu shot recommendations for cancer patients and survivors here.

Quadrivalent Flu Vaccine

I was thrilled to learn this is the first year a flu shot is being offered that protects against four strains of the flu instead of just three.  I went out of my way to get a quadrivalent shot because cancer has made me never want to be sick again!  Learn more from the CDC about the quadrivalent flu vaccine.

Where can I get a flu shot?

This great website allows you to enter your zip code and select the specific kind of vaccine you are looking for from a flu drop down menu.  (I used this to find the pharmacies in my area that had the quadrivalent.)

How can I get a free or reduced cost flu shot?

If you have insurance you are in luck because The Affordable Care Act requires most private insurers to cover your flu shot for free.  But what if you don’t have insurance?  Your best bet is to call a low-cost health clinic near you and ask if they offer flu shots for free or on a sliding scale.  If they don’t, they can usually point you to another place that does.  The link above will help you find clinics in your area that receive federal funding, and you can also use this site to find contact info for your state’s department of public health.

For more practical tips on how to make smart healthcare choices, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I recently switched to a new thyroid medication that made my body and mind feel like they were being pressed through the holes in a metal cheese grater.  That was the closest I came to describing this odd sensation.  I had no burning, sharp pain, or ache.  I could not point to a specific part of my body that hurt, nor could I parse out my body from my mind.  When someone runs fingernails down a chalkboard, what is it that actually hurts?  Your ears, your spine, your mind?  This was the same kind of thing.

I have become familiar with the crazy making experience of feeling symptoms for which there are no accurate or typical descriptions.  In the year leading up to my young adult cancer diagnosis I had many such symptoms.  My doctors still have no idea what they were and don’t believe they were related to the 19 malignant thyroid tumors sprinkled throughout my neck.

I used to resent the medical world for only believing symptoms that have been documented and observed in large numbers of patients.  Over time I have shed my resentment; science aids my body, and most doctors are my allies.  Study and discovery based on empirical evidence is their game, from which I benefit daily.  Still, it is scary wall to hit where doctors are stumped by symptoms.  Many docs could do a better job of communicating to patients about these dead ends.  But anger about being an outlier and animosity towards doctors do not help the situation.

Instead, I’ve developed tricks to cope with random, unnamed symptoms.  They don’t always work, but they allow me to be proactive, which can also help me feel better.

1. I make sure I have a good doctor who is on top of new information about my disease.  (My thyroid cancer doctor is fantastic.  I saw at least six other doctors before I found him.  He is not God.  He cannot understand or change all of my symptoms, but his smarts and forward thinking approach to my disease put my mind at ease.)

2. Making up a name for the symptom helps me differentiate it from other sensations I’m experiencing, and allows me to track changes.  Even if my doctor is stymied and not documenting these symptoms, I continue to do so.

3. I talk about my health with someone who believes what I am experiencing and wants to know how I am doing.  It helps to have a friend say, “So how’s the blood-boiling-sticky-taffy-feeling in your upper arms these days?”

4.  I tap into my well of self-confidence and remind myself that what I am feeling is real, valid, and deserves attention even if it has no name.

For more practical tips on coping with illness as an outlier check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. 

Due to a recent recall of the thyroid medication levoxyl, my blog has been a buzz with detailed comments about pharmaceuticals.  A few of these comments centered around allergies to inactive ingredients.  I am learning what a hardship this is for many cancer patients and others suffering from chronic illnesses, including those who need gluten free products because of Celiac disease. I began to wonder where patients can find reliable information about the content of specific drugs.

I love sharing new resources I’ve found and this is a good one: Daily Med.   It contains a database of FDA approved inserts found in prescription drug packaging, which you can download and/or email to yourself.   Sure, you can go to the recycle bin and pull out the insert from your most recent refill.  But what if you are considering taking a new drug and want to read the insert before purchasing it, or want to arm yourself with smart information about new drugs to discuss with your doctor at your next appointment?  This site is extremely helpful.  I find great value in being able to pull up different data sheets on the same drug produced by different manufacturers.  This allows you to really shop around and compare inactive ingredients, which may differ from name brand to generic, or differ between manufacturers.

The inserts found in the Daily Med database contain loads of information including clinical pharmacology and a list of all inactive drug ingredients.  I learned, for example, that my Synthroid thyroid medication contains FD&C Blue No. 1 Aluminum Lake.  These inserts are clearly formatted, which is great as some of the information is either over my head - molecular diagrams, or information I like to skip over and have my husband filter for me - most especially the many side effects that pose an extremely small risk but that would freak me out if I knew what they were.

Daily Med is published by the National Institute of Health, which is a government entity.  (Hint: If you see .gov in a URL it is a government website.) A lot of research I conducted both for my own cancer care and for my book Everything Changes, came from government websites like Medline Plus or Pubmed.  One thing I particularly like about Daily Med is it does not accept advertising.  It truly exist as a public resource for health care professionals and consumers.

Have you ever had reactions to inactive ingredients in a drug?  How did you learn which ingredients were impacting you?

For copious tips on health literacy and how about to become a savvy patient researcher, check out my book Everything Changes.

From young adult thyroid cancer patients, to those suffering from Graves’ Disease, Hasimoto’s, and other hyperthyroid and hypothyroid conditions, I have been receiving many emails from distressed patients coping with the recent shortage of levoxyl.  Pfizer says it will resume production of levoxyl in 2014, and until then many of us are coping as we try to adjust to new medications like synthroid or generic levothyroxine.

As with any medical issue it is often the challenging and horrific stories that we hear about the most.  So I wanted to take the time to present some positive experiences  I have encountered during my last two months of switching off of levoxyl:

1. Talk with your doctor and get blood tests.

I have had great communication with my doctor every step of the way.  He has taken seriously my adverse reactions.  And, along with my new medication prescription, he sent me a prescription for blood tests to check my thyroid hormone levels one month after taking a new drug.  This is especially important for me as a thyroid cancer patient who needs to hit a target TSH level.  It brings me comfort to know he is taking me seriously  and he is tracking me with tests.

2. Do not store thyroid medication in the bathroom.

In my recent research on levoxyl, I came upon an FDA recommendation to store all levothyroxine products in a dry, non-humid location.  The FDA specifically warns against storing it in the bathroom.  I have been taking levoxyl for ten years and not known this.  I am glad that I happen to store my medication outside of the bathroom and will continue to do so.  The recent recall of levoxyl has made me feel a bit out of control and it is nice to know simple proactive steps I can take towards the best possible outcomes on a new medication.

3.  Remember it can get better.

I have had some strange symptoms since discontinuing levoxyl.  As a cancer patient, it can be really alarming to experience any kind of new reaction in my body.  It has helped tremendously to remember that what I am experiencing is the side effect of a drug and not a symptom of my cancer nor a new mystery illness.  When I had heart palpitations on levothyroixine, I knew to talk to my doc and we decided to discontinue and switch to synthroid.  When my head started racing on synthroid I decided to wait it out for a little while.  And, it has gotten better.  (Knock on wood!) I have heard horror stories online about switching thyroid meds, and it is a good reminder to myself that it does not always get worse; sometimes my body does adjust and side effects do get better.

Have you had any positive experiences in coping with your change to a new thyroid medication?  If so, please share in the comment section below.

In response to Pfizer’s voluntary recall of  levoxyl, I have received many comments from young adult cancer patients and others living with thyroid health issues. Many have asked what patients can do to urge the company and FDA to resume production of levoxyl prior to the target date of 2014.  I believe patient pressure on Pfizer and the FDA will have no impact; unfortunately we must instead experiment with other thyroid replacement hormones, like synthroid, and manage the burden of their potential side effects.  Here’s why:

King Pharmaceuticals manufactured levoxyl in their Bristol, TN plant until 2010 when they were purchased by Pfizer for $3.6 billion.  In August 2011, after conducting studies of its “Logistics and Plant Network Strategies”, Pfizer Global Supply announced it would close their Bristol plant by 2014, relocating elsewhere the production of levoxyl, among other drugs.  It is simply more profitable for the company to abandon levoxyl production at the Bristol plant and make the drug at another location.  On May 29, 2013, the Baltimore Business Journal reported on the acquisition of the Bristol plant by UPM, a Baltimore based company.  UPM will continue to manufacture some of Pfizer’s drugs at that plant for two more years, but  Pfizer has clearly stated that levoxyl will be manufactured elsewhere sometime in 2014.

Coinciding with Pfizer’s new cost-saving manufacturing plan for levoxyl is their voluntary recall of the drug.  A first voluntary recall of levoxyl, announced in March, was based on what Pfizer says were patient and pharmaceutical reports of a strange odor.  Pfizer’s website states: “Pfizer conducted a careful health assessment of the situation and concluded that this odor is not likely to cause any adverse health consequences.”

The FDA recommends a company take a series of actions in response to voluntary recalls, such as creating a plan for remedying the situation and reporting back to the FDA every two to four weeks with updates.  However, in recalls where no adverse health consequences exist, these actions are merely suggestions from the FDA and not enforceable regulations.

At the end of April, just weeks after the initial recall,  Pfizer announced a second voluntary recall when three batches of levoxyl,  made using a previous formulation, showed a potency level slightly below Pfizer’s standards.  Upon this second recall, Pfizer notified doctors that levoxyl production would cease until an undesignated date in 2014.  Because the variation was based on Pfizer’s own standards and not the FDA’s, government oversite does not play a role in this recall either.

Lauren Starr, a spokesperson for Pfizer, indicated to the Wall Street Journal on May 10 that the supply disruption of levoxyl until mid-2014 would not affect the company’s projected earnings for 2013.  (Pfizer is the largest pharmaceutical manufacturer in the world.  Their revenue for 2012 was $59 billion.)

Pfizer has no monetary incentive to rapidly resume production of levoxyl, nor does the FDA require them to do so.   Pfizer’s obligation is to company shareholders, not to patients’ demands.  This is legal and a perfect example of why a healthcare system based on the free market economy and weak government regulations does not benefit patients.

Do you agree or disagree that patient pressure on Pfizer and the FDA will not expedite the production of levoxyl?  Why?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the US health system and its impact on your care.