Inspire The World, Cure Heroes!

To All Cure Heroes

A few weeks ago I attended a conference, where the keynote speaker, Amir Kishon (www.wellness-layers.com), was talking about his social media philosophy of “Me + We + Info”.

More than a decade ago, when I was young and beautiful, I found myself sitting in the opening session of the army officers school. The focus of the cadets was upon the commanding officer of the school. Until this day I can remember his posture and the lines   the sun dug into his face. At some point he waved, and one of the staff sergeants entered pushing a wheel full of books. The colonel picked a book, and with his other hand pointed to the pile of books and said “These are good books, they will teach you about history, about tactics and  the ballistics of a shell. From these books you’ll learn to be good military commanders, but from this book” he waved the book in his other hand “you will be inspired to be great leaders! You will be inspired on how to build a team! You will be inspired on how  to win!. This is a great book by Pat Riley”.

I am sure you are familiar with the sensation when you hear a name and for the first two seconds nothing clicks in your mind, then you start to search for it… Pat Riley, American, maybe British, Vietnam, Korea, WW2… a general in a movie… TV…. and then it clicks – Pat Riley, Miami NBA.

I am sharing with you my short story of how inspiration, team spirit and winning is generic. The reason is very simple – this is what we, in TrialX, do. This is what we need and what you need. You are all welcome to join our Cure Heroes and tell your story. This is our “ME + We + Info”.

Share with us your stories, write about your inspiration, your hope, what makes you wake up in the morning or what doesn’t let you sleep at night. There are many sites that will offer you a word of advice, but our passion (and bread and butter) is to connect you directly to a researcher who performs a study on a new cure or treatment. We encourage you to write your story here on Cure Talk (email us at info@trialx.com)

Gilad Shai

TrialX.com

Did you ever miss taking the pill? How do you feel when you find out that you had miscalculated the days?

Ever wondered if life could be simpler?

1. What’s new?

There are two new clinical research studies (trials) for an investigational birth control patch, that needs to be applied once weekly only. One is the Simplify study and the other is the New Choice Study

2. Who is eligible to participate in this clinical trial?

You may qualify for this clinical research study if you

• Are a woman between the ages of 18-45 years of age
• Have regular, consistent menstrual cycles between 25-35 days
• Have no intention of becoming pregnant in the next 12 months

3. Are there benefits to being in the study?

Qualified participants will receive all study related examinations, lab tests and investigational study drugs provided at no cost. Compensation for time and travel may also be available.

4. Where is the study taking place and who is the investigator?

The Study is being conducted in Denver, Colorado. Dr. Arthur Waldbaum is the clinical trial investigator at this site. 

To see if you could qualify for the Simplify study  CLICK HERE

To see if you could qualify for the study New Choice Study CLICK HERE

Have any questions, leave us a comment below.

We are extremely grateful to the clinical trial volunteers, investigators and research coordinators (we call them “Cure Heroes“) who have given us statements expressing their support for clinical trials (also known as medical research studies).

As part of the new visual design of TrialX, we wanted to highlight people who are looking to participate (volunteers), have participated or are conducting clinical trials. So we emailed some users of TrialX to see what they wanted to say about clinical trials. We got an amazing response from them  and were overwhelmed by their commitment to help find new cures and treatments.

Below are details of all our Cure Heroes. We hope these personal statements motivate many others to consider the potential benefits of participating in clinical trials and medical research studies. And we also hope that these messages continue to motivate the clinical research professionals to work on finding new cures and treatments.

Don and Johnny Parker

This statement was provided to us by Don Parker about his experience with an experimental treatment. Don’s brother Johnny was diagnosed with Aplastic Anemia in 1986. For  Johny’s treatment, Don donated his bone marrow at the Fred Hutchinson Institute in Seattle and the resulting treatment was a tremendous success. Don says,

Clinical trials are very important. My brother eventually died in January 2000 from pancreatic cancer! We were so lucky to have him with us for all the extra years.

Jon Dooley

Mr. Dooley, a 6 year Vietnam War veteran has volunteered to be a research participant for trials looking to treat brain stroke patients.

Jon says,

When you are ready for a Human study Subject, I’m as ready as I will ever be

See Mr. Dooley’s open letter to the research establishment.

Anonymous Trial Volunteer

This statement was provided by a patient who recently participated in a clinical trial for an investigational treatment for Uterine Fibroids. She says,

After 2 years of bleeding from fibroids, enduring pain and my life in a turmoil, my OB-GYN wanted to remove my uterus throwing me into pre-menopause. When told of this study, I agreed to be screened. I was enrolled and participated in the study. It has changed my life. Since having the minor surgery, I feel fabulous. My life is back on track and I still have a few years left before menopause. I also saved $15,000.00 on a partial hysterectomy. Thank you to Everyone who were responsible for this study.

Cinda Hilms

Cinda is looking to participate in a clinical trial for infertility. She sent us a very passionate statement. She says,

My reason for looking into a clinical trial is to further medical knowledge and to help future families in need of treatment. Hopefully the knowledge gained in the studies can be passed on to the State Legislatures. The more knowledgeable people become about infertility and understand that treatment, in most cases, is an absolute medical necessity, the more likely it will become a requirement for insurance companies to provide coverage for treatment. Infertility should be considered a pregnancy-related issue. When infertile couples make the decision to have a child and seek treatment, they should not have the initial stress of deciding how they’re going to pay for treatment. There will be plenty of financial decisions to be made once the baby arrives. I believe Clinical Trials for all conditions/diseases are a necessity for the medical field, Legislatures and families.

Ally G.

Ally has participated as a volunteer in  behavioral and observational research studies since she was 18.

She says,

I do research because i like to learn things about myself and i want to help people learn things about themselves too. I want to help my peers too. If few hours of research can help others, then why not.

Dr. James Greenwald, MD

Dr. Greenwald is the principal investigator of several clinical trials at Medex Healthcare Research. He states that

Clinical trials have proved to be invaluable to anyone who has sought treatment for a medical condition. Your contributions changes lives.

Jennifer McWaters, Clinical Research Coordinator

Jennifer is an experienced clinical research coordinator at a research facility in California. She says,

Clinical trials look forward to what the future will bring. I have spoken with 575 women with Fibroids to date and the stories, although different in levels of severity of pain, bleeding, and being home bound during their menstrual cycle, all have one similarity. They have physicians saying ‘Hysterectomy is your only option’ . Clinical trial of the Halt Procedure could eventually push the ‘H word’ out of the medical doctors way and provide them with a better option for the active strong women of today.

Kim Blozie, Clinical Research Administrator

Kim is a clinical researcher coordinator and administrator at Columbia University Medical Center. She says

To date, clinical trials is the only safe and legal methodology the human race has come up with to investigate cutting edge medicine — It is literally state of the art and allows our understanding of diseases and the ways to treat them to deepen day by day.

Once again we salute these cure heroes who have spent countless hours and dedicated their time and effort to help further medical science. If you have participated in a clinical trial and would like to share your statement about its benefits, please feel free to email us at info@trialx.com. We would love to include your statement (and your picture!).

We recently received a very moving email from one of our site users, Jon. With Jon’s permission (he in fact emailed us saying ‘Just do a Forward to all’) we are posting his open letter to researchers describing briefly his condition and his willingness to volunteer as a research subject for any clinical trial that can restore movement on the left side of his body which was paralyzed following a stroke. 

“ Dear scientists,

I’ve had an ischemic stroke which has paralyzed my left/dominant side. I’m inquiring about the possibility of your research. Can it be that differentiated embryonic stem cells could revive my injured neurons? My stroke happened on 12/08/97. 

As I understand it, I am running out time for anyone to help me with these great Embryonic Stem Cells. Please help me have my chance in your research as your study subject.
 When you are ready for Human Study Subjects, “I’m as ready as I will ever be.”  I’m also leaving open the chance for tissue regeneration.

I’M a 6 year Veteran of the U. S. NAVY. I served as a petty officer on the USS Forrestal, (one of the super carriers built in the 50s, see image) with a mission in the Indian Ocean during the VIETNAM CONFLICT maintaining the F4 PHANTOM Airplanes. 

Thank you!

Jon “

Jon adds subsequently in his email that he never smoked to cause this stroke (smoking is a risk factor for  stroke). He reiterates that he is most interested in embryonic stem cell therapy.

We salute Jon’s dogged determination to continue finding an experimental treatment and also his desire to “regain his life” and to live it as he did before. Despite, his affliction, he sent us a really cool video of big circular rings of bubbles caused by dolphins.

As we write this blog, we have emailed Jon about the work done by Edward Taub on Constraint Induced Therapy that has shown promising results, including in the first full randomized controlled trial (the EXCITE trial) to use CI therapy to re-vitalize movement in patients with stroke.  More details about this breakthrough research will be forthcoming.

If any researchers are looking for volunteers for any cutting -edge experimental treatments for stroke patients, please drop us a line and we would be happy to connect you to Jon.

Source: http://www.projectpcos.org/

Polycystic Ovarian Syndrome (PCOS) is a condition which that can cause problems with regular menstruation (periods) and the ability to get pregnant. PCOS affects as many as 1 in 10 women and is hypothesized to be caused due to hormonal imbalance. The symptoms of PCOS often begin in the teen. Treatment can help control the symptoms and prevent long-term problems (Source: http://www.webmd.com ).

There are a number of support groups for women suffering from PCOS. Project PCOS is committed to patient advocacy and focuses on educating medical professionals who are diagnosing and treating PCOS patients.

Kathryn ‘Kat’ Carney, is best known as the former Consumer Health anchor for CNN Headline News has started an online resource in response to a critical lack of information for women with Polycystic Ovarian Syndrome.

Current medications used to treat symptoms of PCOS include

Birth Control Pills,

Clomiphene Citrate,

Flutamide,

Spirononolactone.

Researchers are actively conducting trials on the treatment of PCOS. Here is a list of active clinical trials:

1. Effect of acupuncture on PCOS
2. Whether a form of Cinnamon is effective in the body as insulin could lower blood sugar levels.
3. Determine the genetic basis of PCOS.
4. A trial to learn more about the increased male hormone levels, otherwise known as androgens, in women with PCOS.
5. A trial to look at the metabolic (use of energy) and hormonal features of sleep problems in women with PCOS.
6. A study to determine whether 6 months of fiber supplementation will improve ovulation in women with PCOS.
7. A trial to determine whether flutamide will normalize sleep-wake luteinizing hormone pulse frequency relationships
8. Establish if vitamin D will improve insulin resistance, inflammation, and overall well-being in women with PCOS
9. Determine whether women who are already receiving treatment for their fibroids (ie. UAE) demonstrate improvement in urinary symptoms and sexual dysfunction.
10. A research aims to collect information and tissue samples from women with uterine fibroids to study genes, proteins and other substances in order to better understand the disease process and improve fertility and reproductive health.

Zit, Acne or Pimple (ZAP)  –  Zapping ZAP’s in the future with Clinical Trials

Source: http://www.wayodd.com

Eighty five percent of teenagers (between the ages of 12 and 24) suffer from Acne, and 25% of them will have permanent scars ranging from severe to light. (Source: http://www.acne-resource.org). I am yet to come across any one of the lucky 15% that don’t suffer from Acne. With the lady luck smiling on them it will be interesting to see if any of the lotto winners are a part of the 15%.

Acne (also pimples, zit) is such a common problem that almost everyone seems to have a cure or a home remedy that will magically cure it over night. With all the advancements in medical science there is no known way to prevent the development of Acne.

Benzoyl Peroxide and Salicylic Acid are the most common over the counter medication used to treat Acne. Researchers are actively conducting clinical trials (medical research studies) on the treatments of Acne.

Here is a list of Active Clinical trials for Acne that you may consider checking out :

1. Trial for new treatment of Nodular Acne
2. Will SMS reminders increase acne patient adherence to topical medications
3. Safety of Botox in people with moderate acne vulgaris
4. Use of Isotretinoin in the treatment of Acne.
5. An exploratory study to evaluate the effectiveness of CD07223 gel in reducing acne counts.
6. A study to measure the effectiveness of YAZ, a birth control pill for treating acne.
7. Assess the safety of Clindamycin Phosphate in the treatment of acne.
8. Assess the safety and efficacy of a new foam formulation of tazarotene in subjects with acne vulgaris.

I came across a question on a post where someone was asking the effect of acne on tattoo’s. If there is a trial for that then I would like to enroll our ed for that.

Just got a SMS reminder to use my topical medication. Got to rush !

Source: http://www.smh.com.au

Impotence also known as Erectile Dysfunction is a common problem among men characterized by the consistent inability to sustain an erection firm enough for sexual intercourse.

Erectile dysfunction can vary. It can involve a total inability to achieve an erection or ejaculation, an inconsistent ability to do so, or a tendency to sustain only very brief erections. It is estimated that approximately 15-30 million men suffer from Erectile Dysfunction in America and this number is only likely to increase with each year (Source - UroToday.com)

Some studies state that the risk of impotence increases with age. It is four-fold higher in men in their 60s compared with those in their 40s according to a study published in the Journal of Urology (2000;163:460-463). Men with less education are also more likely to experience impotence, perhaps because they tend to have less healthy lifestyles, eat a less healthy diet, drink more and exercise less. Physical exercise tends to lessen the risk of impotence.  (Source: MedicineNet)

Current treatments include oral medication, the most common ones being Viagra, Levitra and Cialis. They work by blocking the action of PDE5, which causes cGMP to degrade. cGMP specific phosphodiesterase type 5 causes the smooth muscle of the arteries in the penis to relax, allowing the corpus cavernosum to fill with blood (Source: Wikipedia)

Future treatments include clinical trials testing new drugs against placebos and also to determine the effect of existing drugs in specific situations. Here is a list of active randomized, double blind, placebo controlled trials for Impotence.

1. Safety and efficacy of MC4 Agonist, compared to that of sildenafil, in patients with male erectile dysfunction
2. Evaluation of the Safety and Efficacy ofan investigational medication in Subjects with Generalized Erectile Dysfunction
3. Safety and efficacy of two doses of avanafil following bilateral nerve-sparing radical prostatectomy.
4. Effect of Alfuzosin in treating Erectile Dysfunction in Men that have lower urinary tract symptoms.
5. Determine if adding hyperbaric oxygen therapy for men following surgery for prostate cancer will result in more men being able to continue to have erections.
6. Determine the effectiveness of testosterone replacement therapy (TRT) in men following surgery to remove the prostate in improving erectile function.
7. Determine the effects of aerobic exercise training on ED among 50 sedentary men undergoing radical prostatectomy for clinically localized prostate cancer.
8. Study of Sildenafil Citrate During and After Radiotherapy/Hormone Therapy for Erectile Function Versus Radiotherapy/Hormone Therapy for Prostate Cancer
9. Determine the change in the blood pressure and pulse rate, pharmacokinetics and the safety when avanafil is taken with either enalapril or amlodipine.
10. Uroxatral in Men With Benign Prostate Hypertrophy (BPH) and Erectile Dysfunction (ED)

I was in Las Vegas a few days back and while there i saw signs in every casino that provided a telephone hotline to call for those who think or have a problem with gambling (a condition known as pathological gambling, problem gambling , ludomania or obsessive compulsive gambling). Pathological or Problem gambling is defined  as being unable to resist impulses to gamble, which can lead to severe personal or social consequences (source Google Health).

Most current treatments for problem gambling involves counselling, step-based programs, self-help, peer-support, medication, or a combination of these (Source. Wikipedia). So when i got back i was curious to check if there are any clinical trials exploring behavioral assessments or new treatments (cures) for pathological gambling. ANd i was actually surprised to see that 11 clinical trials are underway in relation to pathological gambling.

Some of these clinical trials are assessing the brains function in pathological gamblers using fMRI (Functional Magnetic Resonance Imaging). But there are other trials that involve medications such as Sertraline, Naltrexone, Talcapone.

Below is the list of the eleven clinical trials currently active

1. Functional Magnetic Resonance Imaging (fMRI) Studies in Pathological Gambling (PG) and Obsessive-Compulsive Disorder (OCD)

2. Effectiveness of Sertraline in Treating Pathological Gamblers With a Diagnosis of Alcohol Dependence – 1

3. Cognitive Behavioral Therapy for Pathological Gambling

4. Impulsivity in Pathological Gambling

5. Memantine Treatment Study of Pathological Gambling

6. Brief Therapies for Problem Gambling Substance Abusers

7. A Pilot SMART Design for Pathological Gamblers

8. Acamprosate in the Treatment of Pathological Gambling

9. Tolcapone Treatment of Pathological Gambling

10. N-Acetyl Cysteine Plus Behavioral Therapy for Nicotine Dependent Pathological Gamblers

11. Investigation of Naltrexone for Pathological Gambling

One of the most common searches on our site is clinical trials of treatments for Uterine Fibroids. In fact there has been a great response (hundreds) to a clinical trial that is investigating a new device (a radio frequency ablation device) that can remove the uterine fibroid without removing the uterus.

We noticed in our search logs that several users are searching for uterine fibroid related trials using a variety of search phrases. In many instances these search terms are actually questions. So we decided to compile a list of the most frequently asked questions and provide some answers and pointers to relevant clinical trials.

1. Do you need a hysterectomy if you have fibroids?
This is one of the most common questions we have seen in our search log and also submitted through our “Ask a question” page. A lot of women think that they may need to get their uterus removed (Hysterectomy) if they have Fibroids. That is not necessarily true. Hysterectomy is surely a definitive option to remove the fibroid completely and get done with it. but its not the only treatment – there are several Hysterectomy Alternatives. So the good news is that no you dont always have to get your uterus removed to treat fibriods. There are several treatment options available such as Myomectomy( a procdeure to remove the fibroid tissue only, Uterine Artery Emoblization, Medical treatment to reduce the size of the fibroids and newer treatments like Radio Frequency Ablation that are still being evaluated and developed. See a detailed description about Hysterectomy and on treatment options

2. What are some new treatments for Uterine fibroids?

New treatments are being developed to treat Fibroids. Some of these are -
a. MRI-guided, focused ultrasound – this is a new, noninvasive treatment available for select patients. The treatment obliterates tumors by focusing high-intensity ultrasound beams on the growths.
b. Uterine Artery Embolization (UAE)- in this the main artery that supplies blood to the uterus is occluded to reduce the supply of blood to the fibroid tissue.
Infact there is a clinical trial to compare the effectiveness of MRI guided procedure and the Uterine Artery Embolization
c. Radio Frequency Ablation – this is a minimally invasive procedure in which the fibroid tissue is destroyed by heating it with high radio frequency waves (see question 3 below). This treatment is being investigated in a clinical trial – see details here

3. What is the treatment option that melts fibroids? Or What is ‘RF fibroid treatment’?

We have got this above query quite a few times. It appears that people are searching for a new treatment that actually “melts” the fibroid tissues. This new device (the procedure is called Radio Frequency Ablation) uses high energy radio frequency waves that generate enough heat to destroy the fibroid tissue which is then absorbed by the body. This procedure/device has shown promise in preliminary research studies and is now being investigated in a clinical trial that is active in 7 cities in the USA including Los Angeles, Phoenix, Detroit, Chesterfield, Reno, San Ramon and New York.

4. My uterus is very big due to fibroids. Could i get then removed with out removing my uterus?

As indicated in #1. fibroids can be removed without removing the uterus. But in some cases if the Fibroid tissue is pretty big then the uterus may have to be removed in a procedure called Hysterectomy.

5. Can your uterine fibroids go away on their own?

That is possible. In fact fibroids can shrink in size and usually do as women age and after menopause. This is because the growth of Fibroids is linked to the estrogen hormone and a decrease in the levels of this hormone can lead to reduction in the size of the Fibroids.

6. I have fibroids and need surgery but have no medical insurance.

This question has been asked by quite a few people and in different variations like “fibroid treatment without insurance” or “What do you do if you have fibroid tumors and no insurance”. One way to get treatment for Fibroids or any condition would be to consider participating in a clinical trial. There are currently several clinical trials for surgical treatments of fibroids – here is one which involves MRI-guided ultrasound or Uterine Artery Embolization. The other is Radio Frequency Ablation using the HALT device

7. Can i get Laparoscopic Surgery for my Fibroid Tumors?

Yes. you can – Myomectomy, Radio Frequency Ablation and even Hysterectomy can be done laparoscopically (meaning by inserting thin tubes through the abdominal wall and doing the surgery through the tubes). Laparoscopic surgery usually allows faster recovery.

8. Can Metformin cure Uterine Fibroids?

This is an interesting question. As far as we know, Metformin has not been used to treat Fibroids. However, Metformin is being used or tested to treat Infertility. Sometimes Fibroids may cause infertility and so it seems that some users maybe searching for Metformin in relation to infertility caused by fibroids.

And this actually leads us to the next question…

9. If you have a fibroids in your uterus can you have a child?

It depends – if the fibroid is large it may prevent the the embryo to develop or get implanted in the wall of the uterus. The possibility of having children after removing fibroids depends from individual case to case.

And here are some other interesting questions …

10. Can you still work out with fibroids?

You should be able to unless the fibroid is so big that it causes discomfort and pain when doing physical movements.

11. How big is a fibroid of 20 cms?

Hmm.. That would be quite big if you are talking about 20 cms in diameter – thats about the size of a football.