Partners Archives

When a Melanoma Diagnosis Brings Clinical Trial Options

36 year old Female diagnosed with Stage III Melanoma on May 19, 2014

Diary Entry

I’m fairly new to this fight and not exactly sure what to even expect. Since my diagnosis, I had one surgery to cut off the melanoma (it was on my toe) along with a 3 week recovery while unable to work. It took three weeks for the biopsy to come back. I guess hearing the doctor say that the pathologist said that they had never seen anything like it, isn’t a good thing. Next, was an amputation of that toe, along with Lymph Nodes from my groin area. Those results did not bode well either. Out of the 3 that he removed had a tumor in it. So, my journey next took me to Baltimore, Maryland where I met with an oncologist surgeon. I had a complete dissection on my left groin area. During my follow up visit I found out that the doctor removed 11 lymph nodes and two more came back with cancer cells. I was readmitted to the hospital thinking that my incision was infected. It wasn’t, but the drains weren’t working all that well either. The doctor opened my incision and my wonderful husband has become my nurse and packs the incision twice daily. I couldn’t be luckier than having such a wonderful husband. During all this, I learned that I am extremely claustrophobic. That puts a slight crinkle in trying to have all these tests that I need to have. I try to stay optimistic and keep my sense of humor.

Clinical Trial Options

So now I am exploring clinical trial options.  I have asked for more information on Yervoy, with Melanoma and clinical trialseveryone’s advice. In my area, to receive Yervoy for stage 3 melanoma, you have to be part of a clinical study or whatever. My doctor promised I wouldn’t be given a placebo. But, I would have to travel quite a distance. I know that there are quite a few of you on here that have traveled for treatment. But, for me, right now, it’s just not an option. I have teenage children that need me to be home. I could never do this alone. My husband would be with me, which would leave no one at home…. I am starting on Paxil this week and should (depending on my insurance) start treatment next week. I have had two people on Treatment Diaries tell me about Yervoy and I don’t want you to think that I am not listening to your advice. But I have had 5 doctors tell me that interferon is probably in my best interest. I don’t know how this is going to go. I’m hopeful, and again, I won’t be alone. My husband has and will be with me for the duration of all of this.  I am hopeful!

 

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a cancer diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

 

Breast Cancer Survivor – Exploring alternative treatments and clinical trials

Diary Entry

To all my breast cancer sisters….as I found out when diagnosed with breast cancer in January 2012, we’re Breast Cancer Diaryall part of a big sorority. My cancer was found from my yearly mammogram. I couldn’t feel any lump and neither could my doctor. Before making this too long let me just state the steps of my journey: my prayers became very specific to this news; I went back for an ultrasound – definitely found something suspicious; next met with surgeon, she ordered an MRI & amp, biopsy; result was a stage 1, invasive ductal carcinoma (scary sounding); surgery was recommended, also was told I now had a team of doctors I would be seeing (radiologist, medical oncologist and nurse navigator).

That’s the short story if you want to stop now that’s OK. However, I do want to mention the two newer medical treatments I was able to utilize after surgery – Savi catheter implant for radiation (1 week of treatments vs the normal 5-6 weeks of radiation) and Oncotype.DX test to determine if I would really benefit from chemotherapy. There’s lots of information available on both of these treatments, and of course discuss them with your doctor. From my experience I would recommend both of them if the pathology results are such that you meet the requirements for these treatments.

So the process began, I had at least a 1″ stack of papers to read on breast cancer treatments, types of surgeries, chemo, radiation, etc. At first I didn’t want to read any of it but after a few days I started digging in since I would have to make decisions particularly regarding what type of surgery – lumpectomy or mastectomy, pros & cons on both. I had about two weeks to make up my mind – I read, read, read & prayed, prayed, prayed (my husband was my partner in all my decisions as well). My choice was for a lumpectomy (called breast conserving surgery)based on the small size of my cancer & the location, and the fact that if after surgery the results showed it was in the lymph nodes I could have a mastectomy.

There’s no doubt that all of a sudden our life was focused on the doctor’s visits, education, patience and keeping down the anxiety while waiting for the day of surgery. The day of surgery finally came, prior to the actual surgery I had to have two procedures done; two wires implanted (with ultrasound guidance to help pinpoint the cancerous area for the surgeon, and a shot of dye injected in the breast which allows for the surgeon to pinpoint the sentinel lymph nodes (the first ones that would show if the cancer was on the move). The surgery went well and I went home that same evening to wait for the pathology reports which took two days. I was very anxious, of course, for that next appointment wondering what the report would show and knowing my next steps in treatment would be determined by those results. I was Blessed! I had no cancer cells in the lymph nodes and the margins around the cancer were clear. The surgeon had put in a temporary spacer during surgery hoping that I would be a candidate for the Savi catheter. My results did meet the requirements, so during this appointment she took out the spacer and inserted the Savi catheter. This meant then that I would see the Radiologist the next day and the radiation treatments would take place the following week – Monday thru Friday, twice a day, and that would be all the radiation treatments I would have.

It was almost two weeks after finishing radiation that we met with the Medical Oncologist and again, I was BLESSED, the test (Oncotype.DX) showed that I would not benefit from traditional chemotherapy. The doctor did want me to take a 1mg pill daily (his recommendation for me was Arimidex – one of several chemo drugs available) for 5 years. There are possible side effects with all drugs and you can switch to one of the other drugs if needed – everybody is different and you have to work with your doctor to determine what is best for YOU!

I have made this a very long entry, but I wanted to put this down for my own record of this cancer journey, and if the information is helpful to anyone else I would be very happy. I would welcome any questions regarding any part of this journey – diagnosis, treatment, surgery, post-surgery decisions, etc.

My final thoughts would have to be that the most important part of this journey was the deep gratitude I have for my husband (a great caregiver and partner throughout this entire 3 month trial), my children, son & daughter in-law, my grandchildren and all the prayer partners whose prayer support was so strongly felt and deeply appreciated. I was never alone, the Lord was always with me!

I would love to offer my support to any one facing or already on their breast cancer journey!

 

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a cancer diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

 

Spotlight On: Cancer Support Community: A Great Resource

Spotlight

The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area.

I thought it worthwhile to copy the CSC information for two helplines that CSC offers to any cancer patient. The first helpline, called Open to Options® helps cancer patients make decisions about treatment. The second helpline, called Cancer Support Helpline® is for patients, caregivers and healthcare professionals who are looking for information or support. Please avail yourselves of these excellent resources from the Cancer Support Community!

Open to Options – Patients

Making a decision about cancer treatment can be an overwhelming experience for many people. Open to OptionsImportant decisions need to be made about treatment for new or recurrent cancer as well as ending treatment. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your visit is to be as prepared as possible.  Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.As you look at all the treatment options with your oncologist and your family, you will need to determine what you can realistically expect from treatment. Talk with your doctor to better understand your type and stage of cancer as well as what your doctor feels is the best goal of treatment for you. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life. Some cancer treatments are designed to control pain and other symptoms when a cure is not possible. Surgery, chemotherapy and radiation can have difficult side effects, so it’s important for you to weigh the benefits and the challenges, and make a decision that is best for you. Cancer treatments today have come along way from years ago. There are many medications that reduce side effects and make it possible for you to continue to work or keep up with your usual activities.

The Cancer Support Community has a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. Using this service can help you get the most out of your visit with the oncologist and help you talk more openly with your health care team about the things that really matter to you the most in relation to your cancer treatment. In a brief one hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and doctor explore your situation and develop the best treatment option.

Tips for Treatment Decision-Making

  • Learn about your cancer and treatment options. Try and understand as much as you can about your diagnosis and the possible treatments. There are excellent booklets and online information available through the Cancer Support Community, the National Cancer Institute and many other organizations to help you get more informed.
  • Bring someone else along.  Bring a family member or friend along to listen along with you, take notes and keep track of the options.
  • Talk about your decision with someone you trust. It can be helpful to talk through your ideas and concerns with family, friends, clergy or health professional. Some people find that support groups are a useful place to gather information and suggestions from others.
  • Consult guidelines or other decision-making tools. The American Society of Clinical Oncology (ASCO) and other cancer organizations publish guidelines and treatment decision-making tools to help doctors and patients understand various treatment. In addition, some cancer centers offer sophisticated statistical tools you can use with your doctor to help determine the best treatment option based on your personal medical information. Always use treatment guidelines and other tools with the help and interpretation of your doctor.

In addition to the Toll-Free Cancer Support Helpline, 1-888-793-9355, Open to Options is also available through these Cancer Support Community affiliates. Find a CSC affiliate near you and call today for an appointment!

 

Cancer Support Helpline®

Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with Cancer Support Helplinecancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.You are welcome to call anytime.  If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program
  • Live web chat available during call center hours – CLICK HERE TO CHAT NOW!
Disclaimer
The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.

 

Metastatic Melanoma Patient Diary Entry

Diary Entry – Patient With Male Breast Cancer and Melanoma

I’m 72 and have lived most of my life in the Midwest, particularly Michigan, with forays to East Coast and West (New York, California) and two years in Sao Paulo, Brazil with lots of visits afterwards. Profession has been education on middle, high school and college levels as teacher and administrator. I decided when informed of my most recent illness to finally retire from university teaching in a grad teacher education program.

My first cancer was male breast. One of about 1400 a year in the U.S. Stage 2, no recurrence since diagnosis in 2003. Never worried about it returning. Second was metastatic melanoma, Stage IV, this year. Total surprise. I skipped Stages I-III with an unknown primary. Landed in my lung. All removed with a lobectomy (rhymes with my previous lumpectomy). I am now NED to hear this week after PET scan and brain MRI whether that continues to be true. I’m in the watch and wait category for further treatment–probably surgery first, then ipi*.

I don’t know how I am going to do with the program of 3 month scans. I do know I will have to live my life in 3 month chunks, but, of course, do not know how that will work psychologically. I have a very supportive wife, but she worries, too, of course.

April 2013

Had my surgery last Tuesday, back home late Thursday. Watching a good deal of snow out the window. I don’t mind at all not being out driving in it. It’s nice to be snug. We’re a snow belt city, one of the top fifteen or so in the country for total snow fall. I’ll have to look that up. Average winter just about 70 inches. I got into snowshoeing a couple of years ago at a buddy’s place in Sun Valley. Can’t make the reunion of the crowd this year.

Recovery is coming along. No exercise for another week. Then back in the pool, I hope. Can’t even walk around the block (not today, of course). Tomorrow I can drive. MelanomaDiary

“I’m feeling more and more optimistic about the melanoma. I think that’s better than looking around the corner. I have a lot going for me right now, and I’m convinced the ipi is working. Just not sure how well. I heard a doctor on a webinar yesterday say that those for whom ipi really works are like people who win the lottery. Why me? But it is you, and you’re done with melanoma for life. I’d like to be one of those 15%. I’d rather be that person than win the real lottery, no matter how big the payoff.”

As of August 2015 – Still thriving!

 

*”Ipi” refers to ipilimumab, a new monoclonal antibody drug that is being used currently in numerous melanoma clinical trials. Ask your medical team about these trials, or you can browse trials by using various trial finders such as the ones on cancer.gov or Melanoma Research Foundation.

Read more about patients and their experiences with clinical trials at www.TreatmentDiaries.com.  Real people, actual stories, shared in private so you can be more social about your health.

Melanoma Patient in a Clinical Trial

From our partner, Treatment Diaries, this is a diary entry of a melanoma patient who participated in a clinical trial.

Diagnosis: Metastatic Melanoma in 32 year old female.

October 2013

I had a mole removed on my back, turned out to be melanoma stage III. Since that mole I’ve had 5 more removed all positive. I’ve had surgery on the first one and then lymph nodes taken out because they found microscopic cells. September 2014 is when they diagnosed it as metastatic and inoperable.

So a clinical trial is a chance for me to make a difference and potentially beat the beast. I have had two Melanoma Diary
immunotherapy drugs Interferon and now currently on Yervoy. PET scan and MRI are clean for now. I have a lot of side effects from the Yervoy which I’m on right now. Dr put me on steroids to reverse those side effects. I get rashes, colitis, headaches, fatigue, and heartburn from yervoy and muscle weakness; retain water, mood swings, anxiety, emotional from steroids.

I have a four month old baby and recently got married and moved states. A lot of changes in my life the last year and coping the best I can. I have serious moments of a break down but try to hold it together for the sake of my precious baby. Currently I am trying to take lower dosages of my steroids so I can go in for more scans. Dr says we are done with Yervoy because of side effects. But there are other treatments we can look into. That’s my story and please feel free to contact me anytime! I feel the more support I have the better my days turn out! I’m here if you want to talk I’ll listen. Sometimes that’s all I need is to have a shoulder!

January 2015

I go in on Thursday for a treatment called Infliximab.. It’s supposed to stop these side effects from the Yervoy, such as muscle aches and colitis. I’m really nervous because the shot itself has a lot of side effects from what I’ve read. Dr says I’ll only need one shot and it should help me get off the steroids which are a must! I’ve been on steroids since end of August… Right now I’m on 25 mg a day but my highest has been 100 mg. I don’t want to do the shot but I’m at a point it might be my only option. I want to feel normal again with no pills. Will that day ever come, who knows? I pop pain pills like candy and steroids like a race horse.

Starting to think I need a therapist to talk to because mentally I’m not handling things well. My husband says he believes everything will work out, but he’s not giving me the emotional support I need. I don’t think he understands… Takes care of the medical bills but as far as emotional support I’m not sure he can be there for me because he doesn’t understand my fear. Fear of limited days and wanting to enjoy life more. I feel I do the same thing over and over every day… I have a 5 month old so we are stuck in the house a lot and hubby just goes to work and comes home… Same routine everyday… I want to feel alive and excited! I want a date night or to feel sexy and I need affection, ok I’m done rambling I’ll keep an update on how the shot treats me. As far as Yervoy I’m done with it the doctor won’t let me do anymore. Too many side effects! After I get off the roids I’ll have another pet scan. More later…

 

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Diary Entry – Malignant Melanoma 3B

 

 

From our partner, Treatment Diaries, this is a diary entry of a melanoma patient first diagnosed in 2012.

Diagnosis – Malignant Melanoma 3B
Male – 57 years old
First diagnosed Feb 2012
5 operations in a 1.5 year period upgraded to stage 4 Metastatic Melanoma
BRAF POS, as of Aug 5,2013.
Fully Disabled since Oct 30, 2013
Currently on Zelboraf Clinical Trial
Been NED since December 31, 2013

My recent MRI followed by a pet scan were both clear once again! I am still on Zelboraf at 1 pill a day. I have begun using CBD oil twice daily along with all the other things I do this to help me stay healthier and to keep the beast at bay. Come the end of October, I will have been off work for 1 year, on disability/ssi for MelanomaDiary2income.  I still make it to the gym 1-3 times a week and still work out with friends.  On top of that, I take rides on my motorcycle and visit family. I still have fatigue and I sometimes nap a lot still as a result of  the side effects of Zelboraf but I no longer have any evidence of disease.

Pursuing a clinical trial was scary at first but really my only option.  My only option turned out to be the best thing for me and for my family.  I hope my story will inspire others to keep an open mind and to hope for the impossible.  Hopefully this will help others see that some of what the doctors do does help for the better, I don’t know?  Well we all know this is the one club no one wanted to join, but we are in this together and tomorrow’s a new day!!!!

Still thriving as of July 22, 2015.

This abbreviated story of a melanoma cancer diagnosis and clinical trial experience which spans multiple diaries and is available on www.TreatmentDiaries.com.  Sharing your story is empowering.  Join us for completely private and anonymous exchanges about your health.

From the Diary of a Bladder and Prostate Cancer Patient

blue ribbonThis diary entry from our partner, Treatment Diaries, is from a man diagnosed with bladder and prostate cancer in 2000.

Diary Entry:

A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was Prostate Cancerdetermined prostate cancer had also joined the party (need to limit those medical malady invites).    The prior 12 months allowed me to  experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright.  Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills.   Now that I think about it….I didn’t have a good time.

This week my last three month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…..THANK YOU!!  I can only hope to do the same for others!

Take a look at Treatment Diaries – where cancer patients can connect and share anonymously

 

From the Diary of a Stage 4b Melanoma Patient

I am a male with Metastatic Melanoma Stage 4b. Clinical trials have been saving me. Latest is GSK B-RAF inhibitors. Jan07 Original Site was my left thigh. Removal, sentinel node removal, all clear. Mar09, golf ball in left groin. Removal. Lymphandectomy Jun ’09. Reoccurrence in chest Dec10. Inoperable. BRAF trial Apr ’11, still on trial.

Still thriving as of May 2015!

Diary Entry – Melanoma Patient

Amazing, when I wrote this diary title down – September 2014, I recalled how it was not that long ago that I refused to write dates. For over 2 and a half years, I lived in 3-week blocks. Couldn’t plan anything, couldn’t do anything, because I was so close to being finished. Two stints in a hospice house proved that. Yet here I am today and now I keep track of my entries by writing the date.

So Fall is upon us, the leaves have changed color and are falling in great numbers. The mornings are brisk but the afternoons Treatment Diariesget warm…well, warm for us up here, I suppose. Went for a good walk today through the forests, I just love the colors and the smells of fall. It was great.

My dizziness still eludes myself and the docs. This is good as it means Mr. C is not visiting at this time but all the same I am frustrated at not being able to get “normal” again. I think I am well enough to go back to work…well, I want to anyway but it certainly won’t work if I can’t get there without falling down.

I read another person’s post about their recovery and how the length of time it takes tends to baffle them. That really helped. The only people I know that have been to the edge like myself and have made it back just aren’t the same people they were going in and have conceded to not working anymore. I am bored without the work and being a part of something bigger. These are long days at home, long, especially when the body is working fairly well compared to what it was. Summer is gone and fall is here, next comes winter so I better find a hobby cause winters are long up here.

Spotlight on LUNGevity: Cancer and Stress

Spotlight

(Editor’s Note: LUNGevity is one of our esteemed partners. This leading organization has for mission to make “an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease.”)

 

Stress affects all of us in one way or another. By definition, stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.

A new year presents new challenges for people on top of everyday stressors. Whatever your life challenges are, there are ways to manage your stress so that it doesn’t become harmful to your health. This is especially important for those of us who have had cancer.

Some experts say that is the link between cancer and stress—if stress decreases the body’s ability to fight disease, it loses the ability to kill cancer cells.

Stress doesn’t only make us feel awful emotionally,” says Jay Winner, MD, author of “Take the Stress Out of Your Life” and director of the Stress Management Program for Sansum Clinic in Santa Barbara, Calif. “It can also exacerbate just about any health condition you can think of.”

Stress may worsen or increase risk of obesity, diabetes, headaches, depression and heart disease as well. People fighting cancer may feel stress about what their bodies are going through, what their families are going through, uncertainty about cancer treatment, financial and emotional concerns.

Here are 5 things people who have had or are living with cancer can do to reduce their stress.

1)     Get Informed

Becoming well educated about your health conditions, treatment options and symptom management may reduce stress. While too much information may feel overwhelming to some, knowing your disease, recognizing your symptoms and where to get help for your side effects may help you feel more secure and supported in your cancer treatment.

2)     Express Yourself

Talk about how you’re feeling. Join a support group. Talk to family members and friends. For some who aren’t great talkers—write about your feelings in a journal or express yourself in artistic ways. Expressing to others about how you’re feeling may reduce tension and stress

3)     Get Moving

Exercise can help reduce stress. Activities such as walking can also help to relieve pent-up energy. For those who have physical limitations, light movement of arms and body can also help with circulation and reduce stress.

4)     Be Kind to Yourself and Others

Take breaks when you can. Eat nutritious foods, get plenty of sleep, and be kind and gentle on yourself—you deserve it.  Helping others can also make you feel good about yourself. Survivors in our LifeLine Support Program have reported that helping patients who were newly diagnosed actually helped them to feel better about themselves and what they had to go through with cancer.

5)     Ask for Help

There are resources available that can help you with practical and emotional issues surrounding your cancer. Start with your doctor and patient navigator. Sometimes an oncology social worker is the one who has a list of resources available in your area. Ask for help from family and friends who can step in to help with practical needs. If you have a hard time asking for help, designate a caregiver or advocate who can find you the help you need.

Katie Brown                                                  LUNGevity logo

Content courtesy of LUNGevity

Spotlight on PAN: Partnering to Empower Patients in a Changing Landscape

Spotlight
As the Patient Access Network (PAN) Foundation begins its second decade of providing help and hope to patients with chronic and life-threatening illnesses, a new landscape is emerging. New treatments, new diagnostics, and a newly insured population present opportunities and challenges for accessing health care and achieving and maintaining good health. Whether it is understanding a health insurance policy with its co-payment, deductibles and co-insurance; addressing a patient’s day-to-day needs; or accessing a targeted treatment, PAN recognizes that patients and their families will continue to need support not only from safety net programs, but also from patient advocacy and professional organizations.PAN_save_the_Date_7-24_v10

To better understand the changing landscape and its challenges, determine the scope of assistance needed and identify opportunities to empower patients and provide relief and support, the PAN Foundation brought together stakeholders from the patient advocacy and professional communities, pharmaceutical industry and specialty pharmacy for an important dialogue on October 22, 2014. Participants considered the following questions:

 

–       Are the health care issues we hear and read about what stakeholders are encountering on the ground?

–       Are there best practices or novel solutions that can be shared and implemented?

–       Are there opportunities to partner that will enable each of the organizations to meet the needs of our constituents more comprehensively?

 

The objectives for the day included:

 

–       To provide a forum for knowledge transfer, discussion and deliberation about the rapidly changing health care landscape

–       Discern specific implications of current and future health care trends with regard to key stakeholders (patients, advocacy groups, providers, industry and specialty pharmacy)

–       Identify challenges and opportunities for empowering patient s in this changing environment and obtain recommendations for a strategic course of action or actions

–       Determine partnerships needed to proactively improve patients’ health and access to quality care and treatment.

 

Stay tuned to learn more about the PAN Round Table discussion, what the participants discussed and the conclusions drawn from this important meeting.

 

 

 

Spotlight on StupidCancer: mHealth Comes to Patient Support Groups

Spotlight

If you are a patient and haven’t yet researched or joined a patient support community, you should.

Communities exist for chronic cancer patients, chronic disease patients, rare disease patients and patients with almost any disease you can think of. Founders of these communities are often patients themselves and started the community with the thought of helping other patients through the medical and emotional maze that comes with the territory of living with a serious illness.

Websites such as Ben’s Friends or HealthUnlocked are networks of different patient communities relating to different diseases. PatientsLikeMe works more like a database with a member login and the ability to search for others with the same disease. It touts more that 250,000 members, and over 2,000 conditions represented.

Imerman Angels offers one-on-one cancer support. Patients are matched one to one with another patient, hopefully who lives nearby, is about the same age, with the same diagnosis and some of the same problems and issues.

And now, there is something more….. StupidCancer, an organization specializing in young adult cancer is developing a mobile app that will match cancer patients globaly, digitally and anonymously, via SMS, one to one, with another cancer patient.

StupidCancer states on its website,

“Stupid Cancer ….empowers those affected by young adult cancer through innovative and award-winning programs and services. We are the nation’s largest support community for this underserved population and serve as a bullhorn for the young adult cancer movement.” 

Adolescents and young adults account for 72,000 new cancer diagnoses each year. What better than a cool mobile app to appeal to the younger generations? StupidCancer’s Instapeer is an app that works much like an online dating service. You can screen and filter and choose, all anonymously, to be matched to another cancer patient in order to converse, support and help one another through living with cancer. See the Instapeer images below to get a feel for how the app works:

Instapeer screen shots

Instapeer screenshot2

Instapeer screenshot 3

StupidCancer feels that current cancer peer matching services need a 21st century makeover – a more relevant process that is in sync with today’s empowered healthcare consumer.

The Instapeer campaign on Indiegogo claims that Instapeer is for any cancer patient, but it will most likely appeal to the younger and more tech-savvy candidates.

The Indiegogo page lists the medical advisors involved in the development process and also offers numerous “perks” for contributions of increasing amounts.

I spoke with Matthew Zachary at Stupid Cancer and asked him how he came up with the idea.

“No one else was doing it. It’s a revolutionary idea that young cancer patients are really excited about. At the recent OMG Cancer Summit for young adults this year, when I assured the audience that we would have an app by Labor Day, Instapeer got a standing ovation.”

StupidCancer anticipates 500,000 users adopting Instapeer by 2016.

Resources:

http://www.csrwire.com/press_releases/36244-Stupid-Cancer-s-Instapeer-Mobile-Health-App-Set-to-Revolutionize-Cancer-Support

 

Spotlight on CareBrigade: How a CareBrigade Can Help You

Spotlight

CareBrigade was created by Florence Harvey for herself, when diagnosed 10 years ago, in a new city far from family. A CareBrigade is a Patient Advocacy Posse of friends, family, neighbors, church members and acquaintances that can be lined up right after the diagnosis, even before the Patient  knows what he/she might be needing, and that be called on at any stage of the medical journey.

The CareBrigade 5 Step system ©  empowers a Patient supported by at least 2 friends or family members chosen by the Patient. To get a CareBrigade started, identify the possible specific needs  (a “Wish List” of tasks),  timelines, and  the talent available in advance, and have a ‘worker bee” team in place “just in case” and  “just in time.”   The Patient chooses  her/his Core Team:  Co-Leader, Scribe, Medical Researcher, Communicator, and communicates directly with them. The Co-Leader (supported by a Scheduler) buffers the Patient  dealing with too many people during a time period that can be overwhelming.

A CareBrigade

  • Empowers Patients to be a full partner with their medical providers,  supported by friends and families with some medical savvy, serving as volunteer Patient Advocates,  Patient Navigators, Scribes,  and medical researchers/consultants.
  • Empowers  Patient’s families,  friends, and  acquaintances to know  in advance which “tasks” might be most challenging for the Patient at each stage, to  pick in advance the ones they could joyfully and easily do, and volunteer before the Patient has to ask.
  • Encourages Patients to use self-care, alternative therapies, relaxation techniques, a compassionate listener,  and self-designed spiritual practices to manage their own fear and anxiety through each stage of the healing journey.
  • Enrolls Friends and Family (even those at a distance) to play valuable roles the Patient might not think of  (like Co-Leader, Spiritual Advocate, Scheduler, Communicator)  using Web based tools, the telephone, or Skype.
  • Solicits in advance (on behalf of the Patient)  willing to offer day-to-day practical support volunteers for Tasks customized to  match the volunteers gifts and the projected at-home recovery Wish List needs generated by the Patient.

The FREE CareBrigade Web site   www.CareBrigade.com  can be used by folks who want to help,  to learn and use the Roles,   no matter the distance. The Web site outlines the 5 steps, suggests 6 Core Support  Roles, offers forms and WEB sites for each Role, and provides a Resources page suggesting additional Medical, Spiritual, Practical tools to facilitate execution of a CareBrigade.

Watch the following video as a CareBrigade member talks about her experience:

Spotlight On Imerman Angels: One-on-One Cancer Care

Screen shot 2014-04-12 at 5.44.36 AM“I’ve been there. I beat it. And so will you,” says Jonny Imerman, cancer survivor and founder of Imerman Angels, a cancer support group that matches cancer survivors to cancer patients on a one-to-one basis.

Diagnosed with testicular cancer when he was 26 years old, Imerman quickly learned that newly diagnosed cancer patients feel alone and afraid, and that support is key to improving mental and physical health.

Started in 2006, Imerman Angels now has a roster of over 6,000 cancer survivor mentors and caregivers. Over 400 different types of cancer are represented. Many staff members are also cancer patients and the small group runs largely on donations. Every effort is made to connect people with the same type of cancer, of similar age from the same city or town.

Imerman Angels operates in over 60 countries and when patients are not close geographically, they rely on social media and Skype to connect. Imerman mentioned that often, patients from other countries wanted to be matched with a US treated patient survivor as they respected US medical care and wanted to ask specific questions about treatment.

Imerman Angels accepts people of any age. Although initially, most patients were young adults, the average age has gone up significantly and currently is around 50 years old.

Imerman explained that the organization’s mission was getting cancer patients together, one-on-one, to share experiences and make the journey easier.

“Our whole mission is so simple.  If somebody is diagnosed with cancer, any type of cancer, anywhere in the world, there’s a survivor out there living with the same cancer and going through the same thing, and that person can help. Putting these people together in the same room is our goal, to empower the newly diagnosed patient by having him meet someone who has already been there.”

I asked if his patient mentors went through any specific training and Imerman answered,

“Yes, we talk to all patients and mentors and assess both parties and then make the best match. We talk to the patients and get to know them and figure out what they need. We talk to the mentors and make sure they understand how best to help the patients and support them through their diagnosis, treatment and life with the disease.

We have a training manual and a medical advisory board of PhDs, MDs, psychologists, social workers, nurses that helps us with the training program. We want to make sure that mentors understand their role.

We make a match only after we have assessed both parties and the mentor has completed the training.”

I asked about follow-up after the initial matching process. Imerman answered,

“Oh yes, you have got to check in. You cannot assume that the match on paper is going to be the best match. After 3 weeks, an automatic email is generated and sent to both sides asking if they connected, if they are satisfied, if they have questions or want to change anything at all. If there is any hesitation, we will look into the situation and change it.”

I was curious about the reception that Imerman Angels gets in medical institutions from doctors, nurses and the rest of the medical staff. Imerman was very enthusiastic.

“Almost 100% if not 100% of the hospitals are extremely receptive to us, that’s not the problem. They are all saying – ‘Wait, this is free? And it helps my patients? You’re going to do this program for us; we don’t have to think about matching patients within our own clinic? This is great!’

Many of the local Chicago hospitals sponsor our events. We have spoken at Mayo, City of Hope, MD Anderson, USC, Dana Farber. They love what we do and they believe in it. The problem is always keeping us on their mind. They are doctors and medical staff and they are trying to cure patients; I get it! But we want to make sure they keep us in the forefront of their mind going forward and refer their patients to us.”

Imerman firmly believes in online support groups. He loves it when people use his one-on-one approach and also join online groups or participate in local group meetings.

“It’s so individual. I think that people that are interested should take advantage of all that is out there. Find a support group; find a mentor through us that you can talk with. Find out what suits you best.”

The biggest challenge for Imerman Angels is growth. Last year, they helped a total of 2300 people, and they did this with a staff of 9.

“Our biggest challenge is learning how to grow. One thing that our board has helped us do right is that we are very mission-focused. One-on-one peer support for cancer patients. That is our mission. We want to own that space and do the best we can do”

For the future, Imerman says that they just want to grow and expand the mission to include more patients.

“Our plan is to reach from thousands to tens of thousands to hundreds of thousands to millions of people. The more people we reach, the happier we are.”

Please visit the Imerman Angels website to learn more about this great organization.

Resources:

http://www.imermanangels.org/

http://www.cnn.com/2012/08/23/health/cnnheroes-imerman-cancer

https://www.facebook.com/ImermanAngels

http://www.huffingtonpost.com/jonny-imerman/cancer-support_b_2442697.html

 

This post was originally published on HealthWorks Collective