Yale New Haven Hospital - The World is "Closer to Free"

I get a little sick of some of these flashmob things, BUT NOT THIS ONE!!!!

Could there possibly be a better phrase, "CLOSER TO FREE"????  Free of Cancer. 

Thanks to Debra for sharing this!!

Here's the backstory...

"On November 20, 2012, a group of cancer survivors, doctors and caregivers from Smilow Cancer Hospital, along with the Fairfield Children’s Choir and a troupe of stage performers, came together at Union Station in New Haven. They were there to celebrate personal triumph. And to celebrate life. The event was a flash mob - a live, spontaneous performance that helped draw attention to our mission of making the world cancer free."

Yale New Haven Hospital - The World is Closer to Free

www.closertofree.com 

Check it out!!                           

Extended Stay America Donates Hotel Rooms to Cancer Patients

I didn't write this one, but here's some important free lodging (or $12 per night) information for cancer survivors.

http://kataaulia.com/hotel-building-cartoon

Article date: October 21, 2013

By Stacy Simon
 

Extended Stay America is partnering with the American Cancer Society to provide 10,000 free nights and 10,000 discounted nights in its hotels to cancer patients who must travel to another city to receive treatment. The donation will expand the Society’s Guest Room program, which offers free and discounted rooms to patients and caregivers, offsetting costs associated with living away from home.

 

The hotel rooms will be available starting November 1 in Atlanta, Boston, and Houston, and will be rolled out to other cities beginning in early 2014. In all, Extended Stay America will offer 10,000 free rooms to cancer patients and another 10,000 rooms at a discounted rate of $12 per night at 684 locations in the US. Cancer patients and their caregivers can request rooms by calling the American Cancer Society at 1-800-227-2345.

 

“This partnership comes at an important time for the American Cancer Society,” said Kristen Solt, vice president, Hope Lodge Network, “because as the delivery of cancer care continues to change, patients have more treatment options and their best chance for successful treatment may be in another city. Extended Stay America is giving more lodging options to patients who need to travel to another city for treatment.”

 

In addition to the hotel Guest Room Program, the American Cancer Society operates 31 Hope Lodge facilities in 22 states. These lodges provide a home away from home during treatment. In 2012, Hope Lodge provided more than 260,000 nights of free lodging to cancer patients and their caregivers, saving them an estimated $26 million in hotel costs. The large donation of rooms from Extended Stay America is expected to ease the waiting lists at Hope Lodge so patients won’t have to delay treatment..

 

“Extended Stay America is committed to giving back to the many communities in which we operate, and one important way to accomplish this is by taking care of those who seek a better future for themselves and their families,” said Jim Donald, chief executive officer at Extended Stay America. “With cancer impacting everyone’s life in some way, we’re proud to partner with the American Cancer Society to provide the key to hope for patients battling cancer so they can focus on their fight.”

 

According to Solt, Extended Stay America guest rooms will work especially well as a complement to Hope Lodges, because they come equipped with a full kitchen and access to laundry facilities, making them more like home and more like Hope Lodges.

 

“When you are sick with cancer and taking treatments, your time should be spent during the many things you need to do to get well such as taking your medication, exercise, proper dieting, radiation treatment and meditation and staying focused on the goal of getting well,” said prostate cancer survivor Jimmie Herndon. “The last thing you need to do is worry about lodging, bills, etc.”

 

In addition to donating the hotel rooms, Extended Stay America has also committed to becoming a National Corporate Team Partner for Relay For Life, the Society’s annual event held in communities across the country and the world to celebrate cancer survivors and remember those who have been lost to the disease, as well as raise funds for cancer research and programs. Hotel employees also volunteered resources and raised funds for the Society’s Making Strides Against Breast Cancer walks this year. And throughout National Breast Cancer Awareness month in October, the hotel is holding a promotion during which hotel guests can donate $5 and receive a pink room-key card, benefitting Society research.

For more information about the Hope Lodge or Extended Stay America programs, call the American Cancer Society at 1-800-227-2345.

http://www.extendedstayamerica.com/acs-partnership

Summer sun safety: Contact lenses with UV protection

File this under melanoma awareness.  This isn't my column, but it is a great idea and something to share with others.

Summer sun safety: Contact lenses with UV protection

By Amanda Woerner

Published June 24, 2013

| FoxNews.com

With the official arrival of summer, taking protective measures against the sun’s dangerous rays is essential. While many may think they’re prepared with sunscreen, a hat and sunglasses, doctors say there’s another must-have to add to the list: UV-blocking contact lenses.

Contact lenses with ultraviolet protection help reduce or eliminate the UV rays that would normally strike the naked eye, according to Dr. Karl Citek, professor of optometry at Pacific University College of Optometry, and member of the Foundation of the American Academy of Ophthalmology (FAAO).

While it’s common knowledge that UV rays can cause serious damage to the skin, many may not realize that they also pose major short and long term threats to eye health as well.

One of the most common effects is called photokeratitis – or a sunburn of the eye.

“It can be quite painful, with additional symptoms of itching or burning, a sandy or gritty feeling, and increased sensitivity to light,” Citek told FoxNews.com in an email. “It usually resolves within 24 to 48 hours, even with no treatment, but it is still best to see an eye care professional who can provide artificial tears or lubricants as well as antibiotics to reduce the risk of a secondary infection.”

Additionally, UV rays can cause long term damage to the eye. Sun exposure can cause cataracts, resulting in a clouding of the lens inside the eye, which severely reduces vision and can only be corrected with surgery, Citek said. It can also cause conditions like pinguecula, a raised bump on the sclera – the white outer wall of the eye – or pterygium, an abnormal growth of tissue from the sclera onto the cornea.

“Both conditions exacerbate dry eye problems with symptoms of burning, itching, sandy/gritty feeling, etc., and can make wearing contact lenses uncomfortable or impossible,” Citek said. “In addition, if a pterygium grows beyond the center of the cornea, it will reduce vision; it can only be removed surgically, but it has a tendency to grow back.”

Furthermore, sun exposure can lead to cancer in the eyeball and can also exacerbate age-related macular degeneration (AMD), resulting in severe vision loss, according to Citek.

Not all lenses offer UV protection, but those that do typically include a label on the box, and patients can also consult with their doctors.

The lenses, which are regulated by the FDA, come in two categories of protection: Class I blockers, recommended for high-exposure environments like the beach, block more than 90 percent of UVA rays and 99 percent of UVB rays. Class II blockers, recommended for everyday conditions, block 70 percent of UVA rays and 95 percent of UVB rays.

“Currently three major soft contact lens manufacturers offer at least one line of product that offers UV protection: Vistakon, with all Acuvue lenses; CibaVision, with PrecisionUV lenses; and Bausch & Lomb, with BioTrue ONEday lenses,” Citek said.

Brands are continuing to improve their offerings.  ACUVUE® recently released the 1-DAY TruEye® Brand Contact which claims to block out more than 96 percent of UVA rays and 99 percent of UVB rays that reach the lens.

“I think this is the best kept secret in the eye care arena,” Dr. Susan Resnick, a member of FAAO, and a paid consultant for ACUVUE® Brand Contact Lenses, told FoxNews.com.

However, while it may be tempting for UV-blocking lens wearers to leave the shades at home – doctors say that isn’t wise.

“Contact lens protection is never a standalone entity – it still needs to be used in conjunction with sunglasses and a broad-rimmed hat,” Resnick said.

Read more: http://www.foxnews.com/health/2013/06/24/summer-sun-safety-contact-lenses-with-uv-protection/print#ixzz2dYv0bQry




link for cartoon:
http://illustration-pictures.feedio.net/heatwave-summer-sun-cartoon-illustration-royalty-free-stock-vector-art/i.istockimg.com*file_thumbview_approve*6934276*2*stock-illustration-6934276-heatwave-summer-sun-cartoon-illustration.jpg/

Claritin May Relieve Bone Pain Caused by Neulasta/Pegfilgrastim

Do you get horrible bone pain when they give you your Neulasta (Pegfilgrastim) shot and for a couple of days afterward? 

Many of you will get relief with Tylenol or Naproxen or a Non Steroidal Anti-inflammatory pill.

Lately there has been a lot of anecdotal reporting of patients getting relief by taking Claritin.  Yup, that's right.  THAT Claritin (allergy medication).  Here's a great article about it and an ongoing trial looking at this very question.   You don't have to be in a trial to take it, as you can get Claritin without a prescription right over the counter.  You may want to try it (with your doctor's permission of course) and see if it helps.   The trials are so we can legitimately see if it actually works (other than anecdotal evidence) with large numbers of patients. 



Check out this excellent article by oncology nurse Katherine Mitchell, APRN, AOCNP

Using Antihistamines for Neulasta-Induced Bone Pain

  

"In our medical careers, we have all been guilty of recommending a remedy for a patient’s ailment because it worked for a handful of other patients, or even for ourselves, and thus we think, “Why not try this?” We know, however, that good medical practice warrants evidence to enable sound judgment and advice.
 

Something you may have begun to notice in the outpatient oncology setting is the use of Claritin (Loratidine) for Neulasta (Pegfilgrastim) induced bony pain. Neulasta is used with certain chemotherapy regimens to lessen the incidence of chemotherapy-induced neutropenia, thus reducing the risk of infection. The drug works by stimulating the bone marrow to produce new granulocytes. This stimulation, or “revving up” as I like to describe it, of the bone marrow often leads to some degree of bone pain.
 

Our greatest marrow reserves are located in our pelvis and femur, and therefore pain is often reported in these regions, typically lasting for a few days after the Neulasta injection. There are, however, those patients who suffer from significant bone pain; so much so they will say it is worse than the chemotherapy. Traditionally we have tried NSAIDs, narcotics, or steroids. But these often fall short in controlling the pain. It is in these patients that we find ourselves needing to think outside the box -- this is where Claritin may come in handy.
 

Claritin is a tricyclic antihistamine, which acts as an inverse agonist on peripheral H1 histamine receptors. It is thought that perhaps in addition to the physiologic stimulation of the bone marrow, there may be inflammation and the release of histamine. Thus the use of an anti-histamine could potentially be helpful. I have seen this work for a handful of patients in clinical practice. We used it for those cases where we were out of other good ideas to help the patient, short of cutting out Neulasta all together.
 

Thankfully there are now clinical trials underway to investigate this remedy appropriately and finally help us as clinicians to come to a determination as to whether this is sound, evidenced-based advice we are giving out.
 

Currently www.clinicaltrials.gov has two trials, one of which will actually close this month. The other trial, which started in 2012, is still ongoing. Perhaps you are a research nurse, or have patients who might be good candidates for inclusion, assuming you live near one of the location sites.
 

I encourage you to check these out and, of course, be on the lookout for any data to come from these trials. I would also love your anecdotal experience; though again I realize reading your comments won’t necessarily help me make a good scientific decision."
 

Great article Katherine Mitchell!!!
 

Here is the trial that is currently open and accruing which looks at this very question.  The trial number:   Protocol IDs: 20110147, NCT01712009
 

This trial randomizes you (like a flip of the coin) to decide whether you will receive:
 

1)  Claritin

2)  Naproxen

3)  No Treatment
 

http://www.cancer.gov/clinicaltrials/search/view?cdrid=742027&version=HealthProfessional&protocolsearchid=11965193

 

 

Hope this helps!

Sailing Heals

 

 

 

 

 

 

 

 

 

I have the very fabulous Shirley to thank for this great resource!!

 

Shirley is an awesome ovarian cancer survivor who loves the ocean.  She went on a day sail with the folks from "Sailing Heals".  According to Shirley, it was an amazing day!! 

 

Cancer survivors and their guests get a free sail (and sometimes lunch!) out on the ocean compliments of Sailing Heals and their generous donors.

 

According to their website, Sailing Heals is a non profit that teams sailors up with cancer survivors, (and their caregivers/friends) and provides them with a sailing experience that they will not forget!!

 

Apparently they can take groups ranging in size from 20  to 150 depending on the size of the boat.  The ride can last as long as a few hours on their day sail, to several days on one of their schooners.

 

This is a resource for cancer survivors in MA, RI, and FL.  WOW.  What a great idea and awesome gift for cancer survivors and their families!!!  The healing power of the ocean.  Spending time with caregivers and friends away from doctors and clinic appointments = AWESOME.

I also love that they call their cancer survivor guests simply "VIP guests"!!  So true!!

 

You can't really say it better than this...

 

"Cancer took a backseat that day; we had the time of our lives" -Linnea Duff, VIP guest of Sailing Heals.

 

From their website:   www.sailingheals.org

 

About Sailing Heals

 

"Sailing Heals’ essential mission is to take individuals and their families or caretakers out on the water for a beautiful day of sailing and respite. Sailing Heals matches owners of beautiful boats (sailing or motorized) with patients and their caretakers and host them for complimentary 2 hour sails, often accompanied by a water-side lunch or picnic. 

Sailing Heals is a 501(c)(3) organization which offers enjoyable sailing experiences to VIP patient guests, their caretakers and staff who would benefit from a memorable and healing day on the water. Operating in Marblehead, MA, Southeastern MA, Nantucket, New York City, Newport and Miami, its mission is to give people in need an “escape for a spirit-lifting day at sea.” Its second aim is to bring the great sport of sailing and the healing properties of the sea to people who might not ordinarily be exposed to its benefits; and its third aim is to be the charity of choice for sailing and boating enthusiasts who are keen to give back to others and share their beloved sport. Sailing Heals is supported by generous donors and sponsors."

To find out more information about becoming a donor or becoming a VIP cancer survivor guest, contact them at:

Sailing Heals, Inc.
5 Winchester St.
Bradford, MA 01835
978-914-6609info@sailingheals.org

Thanks for telling me about this great resource Shirley!!

 

 

 

• sailboat art by:
• http://www.kcarroll-art.com/

Financial Assistance for Melanoma Survivors

                                         









Hey blog friends!  Sorry that I haven't posted for awhile.  I have had a big life change that has brought me from Boston to Florida.  I am digging FL, and am liking my new job.  One of the things I like most about my new job?  The people.  They are genuinely nice, incredibly welcoming and they have helped make my move much easier than I ever thought it would be.

My favorite person at my new cancer center is an outstanding and fabulous young nurse whose name is Shonnette.  She gives me hope for the future of nursing.  She is kind, caring, enthusiastic, funny, smart as a whip, and most importantly, she is wonderful with her patients and they LOVE her. 

Yup.  It is something that I have always known.  There are amazing oncology nurses all over this country, and I have just stumbled upon a fabulous group of them at my beautiful new cancer center.

Just like at my old hospital, I continue to learn great things from the people I work with and the patients that I meet along the way!! 

The one bad thing that I have learned at my new job?  There are a LOT of patients with melanoma down here in Florida.  I hate melanoma.
 
Today's tip is a resource for melanoma survivors that I learned from Shonnette.  It is a fund for melanoma survivors.  Not "possible" assistance that "might" be available if you meet some magical income cutoff.  A real tangible financial stipend to help melanoma patients who are undergoing treatment in the amount of $2000.  It is a one time thing.   

If you are a melanoma patient, ask your nurse or social worker to contact the folks at The Bill Walter III Melanoma Research Fund to ask for assistance for you.  Apparently the request has to come from a health care worker on your behalf to describe your medical condition.   Ask your nurse to contact:

Rayz Awareness  (of melanoma)     http://www.billwalteriii.org

Then, you will have to provide them with some financial information and reason for request. 

The payment goes directly to the patient.

Since I first wrote this post, I have had the pleasure of speaking with Bill Walter's father.  He and his wife still manage the fund.  Such a lovely, warm gentleman who honors his son in the best of ways....I loved him instantly and thanked him for what he does for melanoma survivors. 

He gave me the name of a woman who is in charge of the yearly walk/run held at Daytona Beach every year.  Apparently young Bill Walter was a lifeguard in his early years, so this is the location of the run/walk.  The money raised all goes to melanoma survivors and to research.  There are no paid staffers, just wonderful volunteers and friends of Bill Walter III.
 
From their website,  "The vision and mission of the Bill Walter III Melanoma Research Fund is to help find a cure for melanoma by supporting promising melanoma research. The Fund also assists melanoma patients who are  undergoing treatment, and endeavors to save lives by raising awareness of the dangers of melanoma.  

Our mission is in memory of Bill Walter III who died from malignant melanoma in 1998 after a long fight. Now we fight the fight for Bill and all the others out there who have or had loved ones with this terrible disease. 

The Bill Walter Melanoma Research Fund (BWMRF) has awarded $80,000 to 38 melanoma patients since it began in 1998. Many of these recipients are from the front range of Colorado.

The BWMRF has awarded $200,000 to research through medical grants and clinical trials."
 
 
Learn more about who Bill Walter was.   Learn why the folks who loved him, honor him by providing this great resource to other melanoma survivors and their families.

http://www.billwalteriii.org/history.shtml

Hope this helps!

Thanks for the tip Shonnette!!!





The Very Fabulous Shonnette

 

Stay Tuned for the Rayz Awareness RUN/WALK in April 2014!!!

 

Come join the crowd to raise awareness and raise funds for melanoma survivors and melanoma research!!!

 

Emotional Support Animals... Hannah, This Means YOU!

 

 

 

 

As a nurse, I  know the importance of service dogs for those who have a disability.

 

As a dog lover, I  know the power of a dog to warm your heart and to provide you with unconditional love. 

 

The healing power of  "Pet Therapy" in hospitals, nursing homes and other health settings is well documented.

 

What I was totally unaware of was the existence of something called an "Emotional Support Animal".   Huh????

 

I learn valuable tips from my patients everyday.  This one I learned from Elaine, who is also a great nurse practitioner.  She also happens to be one of the most gracious, wise, beautiful and truly kind people I have ever met.   She is smart as a whip and always even-keeled.

 

Why am I telling you all of this?  Because she is the one who told me about "Emotional Support Animals"!!!  Not some nut.  Not some Kim Kardashian or Elle Woods from "Legally Blonde" type. 

 

Elaine (smart as a whip and even-keeled girl) is not only beloved by her family, her friends, her ovarian cancer support group.  Elaine is beloved by a pint sized whippet named Hannah.

 

 

 

Hannah!!!

 

Don't let looks deceive you.  While Hannah may look tiny enough to fit into a large Zip-Lock sandwich bag, Hannah is the boss of the family.  Hannah is a 10 inch tall cross between Toto from The Wizard of Oz and Tony Soprano.  She rules the roost, and Elaine and her husband Stan know it!!

 

She also brings great joy into Elaine's life and provides Elaine and her family with hours of entertainment and laughs, snuggles and smooches.

 

For quite awhile Elaine had to fly to the NIH for treatment.  This involved her flying to Bethesda, MD several times a month.  She would bring Hannah for company, to help keep her relaxed while flying, and to have a piece of home with her when she was away from home.  Flying these days is stressful.  Now add a cancer diagnosis, medical procedures and frequent trips away from home into the mix.  This is even more stressful.  Elaine found great comfort and relaxation having her little dog with her.

 

Even though Hannah travels in a small carry on bag, the airline would charge extra each time she flew.  Elaine found out that if Hannah was considered an "Emotional Support Animal" then she would not have to pay for her to fly each time.  Also, this "title" allows Hannah to go places with Elaine where she otherwise wouldn't be allowed to go (restaurants, hotels etc).

 

Elaine asked her doctor to write her a note and then she applied for Hannah to be given the title of "Emotional Support Animal" (to go with her other title of PRINCESS!!!)  : ) .  Hannah was then able to join Elaine while traveling and this eliminated a lot of stress on Elaine's part.

 

The moral of the story?  You don't have to be some crackpot Kardashian who can't go out to lunch without her dog to need an "Emotional Support Animal" (see nauseating Kardashian article below).  If you are a cancer survivor whose stress is ameliorated by your pet and you travel frequently, you might want to ask your doctor to write you a note so you can get the proper papers for your pet.  If it allows your dog access into hotels/hospitals and saves you stress and aggravation as well as some money while flying, then this is a very good thing.

 

Thanks for the tip and ROCK ON BEAUTIFUL ELAINE!!! 

 

And, "way to go" to our favorite little Emotional Support Animal....HANNAH!!! 

 

This from Wikepedia;

Emotional support animal

“An emotional support animal (ESA) is a US legal term for a pet which provides therapeutic benefit to its owner through companionship and affection. Emotional support animals are not specially trained to ameliorate disability as psychiatric service dogs are. They require only as much training as an ordinary pet requires in order to live peacefully among humans without being a nuisance or a danger to others.

In the U.S., two federal laws grant special rights to some owners of emotional support animals.

Fair Housing Act

The Fair Housing Amendments Act of 1988 (42 USC 3601, et seq.) establishes a procedure for modifying "no pets" policies in most types of housing to permit a person with a disability to keep an animal for emotional support.^[1][2] In housing that allows pets but charges supplemental rent or deposits for them, these fees must be waived. The ESA's owner can be charged for actual damage done by the animal, but they may not require the applicant to pay a fee or a security deposit in order to keep the animal.^[3]

Air Carrier Access Act

The Air Carrier Access Act establishes a procedure for modifying pet policies on aircraft to permit a person with a disability to travel with a prescribed emotional support animal so long as they have appropriate documentation and the animal is not a danger to others and does not interfere with others (through unwanted attention, barking, inappropriate toileting, etc.)."^[1][5]

http://en.wikipedia.org/wiki/Emotional_support_animal



http://servicedogcentral.org/content/ESA


http://www.mentalhealthdogs.org/Emotional-Support-Dogs.html


http://www.nsarco.com/acaa.html


http://www.livestrong.com/article/176402-what-are-the-benefits-of-animal-assisted-therapy-for-cancer-patients/


http://www.nsarco.com/emotionalsupportanimals.html


Hollywood has to ruin things!!!

Kristin Chenoweth has one.
http://www.cinemablend.com/pop/Kristin-Chenoweth-Furious-American-Airlines-Tried-Ban-Her-Emotional-Support-Dog-52094.html


The flip side of things.  Freakin Kardashians!!

http://www.nytimes.com/2006/05/14/fashion/sundaystyles/14PETS.html?pagewanted=all



pawprint cartoon:
https://www.google.com/search?hl=en&sugexp=les%3B&gs_rn=5&gs_ri=psy-ab&tok=dDnpmOtnQw2e6DPAt3nsew&cp=10&gs_id=12&xhr=t&q=famous+dictators&bav=on.2,or.r_qf.&bvm=bv.43287494,d.dmg&biw=1360&bih=643&um=1&ie=UTF-8&tbm=isch&source=og&sa=N&tab=wi&ei=6O07UZ2SKqbp0gG1_IC4Ag#um=1&hl=en&tbm=isch&sa=1&q=paw+print+dog&oq=paw+print+dog&gs_l=img.1.0.0l2j0i5l2j0i24l6.4444.8256.0.10036.17.12.2.3.3.0.156.1344.3j9.12.0...0.0...1c.1.5.img.p4UM_4kYOf4&bav=on.2,or.r_qf.&bvm=bv.43287494,d.dmQ&fp=5cbd77424e5771f6&biw=1360&bih=643&imgrc=m-cVmCipoTMG5M%3A%3Bp2C7ZGqhOOBPRM%3Bhttp%253A%252F%252Fecx.images-amazon.com%252Fimages%252FI%252F51Bzd1EpNiL._SL500_SS500_.jpg%3Bhttp%253A%252F%252Fwww.amazon.com%252FPrint-Heart-Lover-Black-Vinyl%252Fdp%252FB005EXZ5B2%3B500%3B500

Free 12 Week YMCA Livestrong Program for Cancer Survivors

LIVESTRONG at the YMCA

One of my fabulous patients told me about this great free resource.   Check it out!! 
 

 

"LIVESTRONG at the YMCA is a twelve-week, small group program designed for adult cancer survivors. This program fulfills the important need of supporting the increasing number of cancer survivors who find themselves in the transitional period between completing their cancer treatment and the shift to feeling physically and emotionally strong enough to attempt to return to their normal life or their "new normal". The program is conducted outside of medical facilities to emphasize that LIVESTRONG at the YMCA is about health, not disease.

Our goal is to help participants build muscle mass and muscle strength, increase flexibility and endurance and improve functional ability. Additional goals include reducing the severity of therapy side effects, preventing unwanted weight changes and improving energy levels and self esteem. A final goal of the program is to assist participants in developing their own physical fitness program so they can continue to practice a healthy lifestyle, not only as part of their recovery, but as a way of life. In addition to the physical benefits, the program provides participants a supportive environment and a feeling of community with their fellow survivors, YMCA staff and members.

YMCA fitness instructors work with each participant to fit the program to their individual needs. The instructors are trained in the elements of cancer, post rehab exercise and supportive cancer care".

 

To find a YMCA that offers the LIVESTRONG at the YMCA location near you, view the LIVESTRONG at the YMCA Map at:  http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-at-the-YMCA/LIVESTRONG-at-the-YMCA-Locations

Some Hints For Finding a Clinical Trial

Get a 3 ringed notebook or organizer with pockets, highlighter pens, stapler/paper clips, sticky notes.

Make a brief summary of your medical history, especially your cancer history.

Have copies of your medical record in case you are asked to fax information to determine trial eligibility. Always keep a copy for yourself.  You don’t need the whole record.  Include:  all pathology reports, any surgical/operative reports, most recent scan reports, tumor marker results, most recent oncologist visit note which will outline your history as well.  It is helpful if you have recent laboratory/blood test results, but the clinical trials nurse can get this herself with your permission.

Include name, phone number, fax number, address of your treating oncologist or hospital so they can obtain your records if necessary.  They will ask you to sign a medical release form.

If you don’t have access to a computer, go to your library.  It is much easier to find out about trials if you have computer access.

Start by looking up NCI/NIH sponsored trials and then narrow your search.  Go to www.cancer.gov   or www.clinicaltrials.gov     You can search by type of cancer, state in the U.S. that the trial is being offered in, stage of cancer, whether you are looking for a “treatment” trial or “supportive care” trial (like….nausea trials, symptom or side effect trials).  

If you are looking for trials at a particular hospital or medical center you can “Google” the name of the medical center and then look for “cancer” and “research or clinical trials” to find specific trials.  Go to every hospital in your state or city if you need to.  There should always be a phone number of a nurse who you can call and ask more questions to.  Feel free to call them!  Some websites will list all trials that they offer and some will make you call them to ask what trials they have for you.  If you only have the main hospital number, call it and ask for their “Cancer Clinical Trials Office or Dept”.  Someone will help direct you further.

Try a clinical trials search engine or matching service (do not pay any money for this service)  like:    http://news.cancerconnect.com/clinical-trial-information  or  http://www.cancertrialshelp.org   or  http://www.centerwatch.com   or ACS www.cancer.org    There are many of them.  Some are better than others.

For some pharmaceutical trials it is a little tougher.  Sometimes they are harder to find and they won’t give you as much information.  If you know the name of the drug that you are interested in, you can “Google” that drug and it should list the name of the drug company who makes it.  Then, go to their website.  Go to the following website and double click on the particular drug company name and it will bring you right to website of drug company.  You can also sort by type of cancer:  http://www.phrma.org/newmeds/  and  http://www.phrma.org/research/clinical-research-trials . When in doubt of where to go next, keep entering terms in “search” “clinical trials”  or “cancer clinical trials”  and then get more specific with each search.

For any of the sites, they will bring you to a brief synopsis about the trial and some of the eligibility criteria for it.  This is another way to weed out the trials that are not for you.  Print these out and save them.  See if you can weed out trials based on this criteria (if it says that the trial is only for 18-35 year olds and you are 45, don’t even bother to look at that trial further).  Call the trials nurse listed in the contact section and take notes about the trial on that particular trial printout.  Believe me, trials can go by numbers and this can all get very confusing and it helps to have your info in one place.  Also write down if you spoke with the nurse or just left a message.

Ask as many questions as you can on the phone to further weed out trials you may not be interested in.  Ask the trials nurse for more information or the consent form for informational purposes to be sent to you if possible.  You waste a lot of time if you have to set up appointments to discuss trials further if there is something that might make you ineligible right up front and you can find out about it on the phone vs making a special trip in.  Remember, your time is important.

A reminder, participating in ANY clinical trial is voluntary.  NEVER let someone try to force you to participate.  Also remember, even if you enroll in a clinical trial, you can come off the trial at ANY time.  If you feel pushed into a clinical trial, something is wrong.

 

   Good luck searching!!!

Some Other Useful Websites for ClinicalTrials:

www.ctsu.org

www.swog.org

www.gog.org

www.asco.org

www.rtog.org

http://www.ovarian.org

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/clinical-trials/clinical-trials-at-md-anderson/index.html



http://www.oncolink.org/treatment/section.cfm?c=3&s=18

Lance.

 

“Let he who is without sin, cast the first stone”.

 

He was, in his own words, “an arrogant prick” who cheated and doped (apparently one of many in a sport that has some serious problems with doping).  This was wrong.   

When he felt threatened that his lies would be discovered, he lashed out and bullied and sued people.  This was really wrong.  

Is he a human being who has a lot of apologies to make and some serious atonement in his future?

 

 Yes.

Did he also survive stage IV testicular cancer (to his abdomen, lungs and brain) and lived to tell about it?

 

Yes.  

Is he also still a stage IV testicular cancer survivor who is an incredible athlete,  able to train and compete in grueling professional level physical competition?

 

 Yes.

You can't take that away from him.   It's not just about the drugs, those drugs alone did not make him an athlete.  Those drugs enhanced his performance and endurance (there is not enough EPO, testosterone or corticosteroids in the world that you could  inject into my big butt that would get me to that level of athleticism).

   

Has he raised 80 to 500 million dollars (depending on the report you read)  for cancer research and survivorship programs that have benefited  millions of  cancer survivors? 

 

 Yes. 

Did he give hope to millions of cancer survivors and put a very  much needed public “face” on the war vs cancer? 

 

 Yes.  

Did he make the U.S. government, NCI and our whole culture take a more serious look at the needs of cancer survivors?

 

 Yes.  

 

He was one of the first to remind the world that it is not enough to just "get through" cancer treatment, that you are allowed to live and thrive again too.  Survivorship has long been on the tongues of those in the oncology community, but Lance and Livestrong brought it to the forefront.
 

You have to take the good with the bad,  and for all the shock and outrage over what he did (what many other professional athletes are doing every day), he’s also done a lot of good and perhaps he is not done “doing good” in his lifetime.
 

The whole situation is sad, and fascinating at the same time.   A cancer survivor uses drugs that are all legally prescribed and commercially available to cancer patients everyday to "enhance" his performance aka to cheat.  It sounds like a movie.  

 

I think if you work in the "cancer world" or if you are a cancer survivor, your feelings are a little different than the average bear.  You're either: 

1) grateful for his contribution to the cancer world and so you can forgive him a little more easily, 

2) he was your hero because he survived stage IV testicular cancer and not because he won a bike race

3) you are most upset because you feel betrayed, as you are the people who needed to believe in him more than anyone. 

4) or....you feel a combination of all of these things.  

 

      In the Oprah interview, Lance says that he really never considered it cheating.   Oprah looks on disdainfully and incredulously and asks Lance why did he not "consider it cheating"?  And basically without saying it exactly this way, he tells the audience that almost everyone is using these drugs in international cycling, so that is why he doesn't consider it cheating.  In his own mind he felt that the playing field was level because everyone in cycling blood dopes. In a surreal way,  you can almost understand where he is going with this.    

Perhaps when all of the media hoopla ends, maybe there is something to be learned from this.  Perhaps this regimen of drugs and blood doping should be examined by scientists to see if it could benefit those with testicular cancer in the future.  How has Lance stayed so healthy and disease free after all of these years?   Or maybe they find that the side effects of this combination of drugs could cause his cancer to recur.  I don’t know and neither does anyone else right now, only time and science can tell.  It would be interesting to look at.

 

To quote Oprah, "Here's what I know for sure":

 

Too much of our government money has been and will be spent on this whole thing.

 

U.S. Postal Service?   Go deliver the mail.  Why the hell did our U.S. Postal service ever sponsor a cycling team?  They are the U.S. Postal service for God's sake.  You could have given those millions you spent sponsoring a freakin cycling team,  to hardworking, honest, employees or retirees for their dwindling pension fund.

 

Those USADA dudes want to be FBI agents.  You guys need to get your shit together and you need to treat all athletes the same.  Find an accurate test to test them ALL and then stick to it.  If they cheat:  fine them, revoke their title, punish them at the time of the incident.  15 years later and retroactive testing for stuff that you didn't know about at the time seems kind of crazy.  Take a blood or urine test the day of the race.  Allow 1 month for full processing.  If you didn't find it then, you move on.  If the athlete manages to outwit you by stopping doping 1.25 days before a race, then hire a decent toxicologist who can catch it or just give up.  Call CSI if you have to : )   This means cycling, football, basketball, baseball etc.  Everyone is tested the same way.  You go after everyone the same way.

 

Stop wasting your time and our taxpayers money hauling these athletes into congressional hearings.  Congress and Senate members....you have enough to do that you aren't getting done to worry about this stuff.

 

Or...do we just all accept that all professional athletes use drugs? 

 

Finally Oprah, you only have one decent show on your whole lame network.  Here is your highest rated show and you can't repeat it a few times for those of us who were working and didn't realize it was a two-parter?   You absolutely have to have on 10 straight episodes of something called "Usual Suspects"  Season 3????  Puh-leeze.

 

As for me, I will continue to have hope that Lance bounces back.  You cannot experience cancer and not learn something.  I believe deep down his work with Livestrong and this whole experience will make him a better person.  He was the founder, we cannot forget that.  You cannot spend time working with cancer patients and not become a better person.  I'll be pulling for you Lance.  I hope Livestrong which is truly a great organization can survive this.

 

Because after all....