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.

How a CLL Diagnosis Changes You

The fourth session of our virtual patient meet-up, Patient Cafe™ took place in June 2015. The topic of the discussion was “How did a CLL Diagnosis Change You?”

Carol Preston led the discussion as the participants discuss the impact of a CLL diagnosis. All participants had gone through some form of treatment although they may have started with Watch and Wait.

Participants talked about CLL changing their lifestyle. John spoke of the “sucker punch” upon receiving the diagnosis, his experience about getting a second opinion and subsequently getting treatment.

Sharon talks about receiving the diagnosis and being unsure of the meaning of it. She talks about her legs buckling when her first doctor suggested chemotherapy. She then decided to obtain a second opinion and went to a major cancer center. Sharon said she researched her illness because “that’s the kind of person she is”.

Betty had already had ovarian cancer and gone through chemotherapy. At a follow-up appointment, she was diagnosed with CLL. She had never heard of CLL and asked her oncologist what it was. Her oncologist gave her a book and told her not to worry. She decided then and there to go to a major cancer center and join a support group. She researched her illness and went to a specialist. She is now taking oral medication and says she feels wonderful!

Watch the video and learn and gain confidence from these EMPOWERED PATIENTS! You too can become empowered and be your own best self-advocate!

How a CLL Diagnosis Has Changed Us from Patient Empowerment Network on Vimeo.

The fourth Patient Cafe™ for CLL patients starts out by introductions all around. Carol Preston leads the group discussion about the impact of CLL on relationships and lifestyle. All participants have undergone some form of treatment although they may have started with watch and wait.

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.

CancerLinQ for Oncology Data

“Shoppers have Amazon,

Students have Google,

Oncologists will have CancerLinQ”

-CNN

That quote appeared on a brochure I saw at ASCO and it peaked my interest in a special patient advocate session that was being held to introduce us to CancerLinQ, a health information technology platform. In January of 2015, ASCO and SAP, a software company teamed up to create a Big Data software platform.

ASCO’s Chief Medical Officer, Rich Schilsky began the session by sharing some important facts with the advocates.

Only 3% of adults participate in clinical trials.

Older adults (>65)  may not qualify to participate in clinical trials so their outcomes and adverse effects may not be known by others who also treat older adults.

As more drugs get approved through the quick FDA approval process there is a need to capture the knowledge that is being generated as patients use these drugs.

Currently cancer patient data is in “silos”( my word choice) at various cancer centers – NCI centers, academic centers, and community oncologist groups.

CancerLinQ will gather data from patients from around the country into a secure, searchable database.

CancerLinQ In A Nutshell :

Electronic Medical Records (EMR) of cancer patients will be collected, “de-identified” and entered into the database. Once the data is entered an number of things can take place:

-Providers can compare the care they provide to guidelines.

-Oncologists can search the database for patients with similar attributes, diagnosis, mutations, and treatments. The oncologists can then with their patients decide which treatment plan is best.

-Researchers can look for patterns in the patient data

In the fall of 2015, the first version of CancerLinQ will roll out and include 500,000 individual records from 15 oncology practices in the US.

For more information please visit CancerLinQ.org

(Editor’s Note: This post originally was published in Women of Teal and was written by Dee Sparacio, an ovarian cancer patient and founder of the WomenOfTeal blogsite and co-moderator of the #gyncsm tweetchat on the second Wednesday of the month at 9pm ET.)

Diary From a Female Myeloma Patient

Female – 53 years old

Diagnosed July 2014

 

My thoughts on Myeloma – June 2015

It started with an unexplainable pain in my back that spread to my chest – to my surprise I was Myeloma_Diarydiagnosed with multiple myeloma a short time later.  I don’t have the symptoms I’ve read about and I am thankful for this and any delay in what might come.  So, now I’m in a club I never thought I’d join – the cancer club. I do find comfort n connecting with those in a similar situation and I have learned from each of you.  It’s the simplified meaning of our cancer that is expressed through personal experiences that brings me clarity and peace.  I’ve been stable and we’re holding off on treatment for now.  It’s a look into the future with the promise of new and upcoming treatments so we wait.  As a cancer patient I worry often about every ache and pain. Does it mean my body is failing me…is the cancer traveling somewhere new?  Paranoia is much like cancer…they travel hand in hand tormenting the patient and their families. Lately I’ve been able to free my mind of what the future holds. I long for total freedom from the one thing I hate more than anything….I despise you cancer!  Today I will not think about you! You don’t deserve my thoughts. I challenge anyone reading this to do the same. There will be good days and bad days but any day we have to share our experience is a great day!

Mucosal Melanoma – Voice of a Caregiver

We respect the privacy of each shared personal stories.

For this  piece, we have removed the individuals name and have identified her as Lilly. 

Meet Lilly:

“Anyone who has cancer is the incredible person,” says Lilly.

Lilly is a full-time mom, who often spends more than a dozen hours in a week supporting her mother who was diagnosed with mucosal melanoma in May of 2015. “I never heard of Mucosal Melanoma until May 15 and want others to know that name.”

Mucosal Melanoma

According to the Melanoma Research Foundation, Mucosal Melanoma is a rare form of melanoma, making up only 1% of reported melanoma cases.  The location of the disease can affect any mucosal surface of the body.

EricaBlogPost“This is not the cancer that will run away – I want people to know the name.” Throughout Lilly’s adult life, she too has battled a series of health issues and recognizes the importance of developing a coping mechanism to support herself and her family. “Life is about fighting, about survival, not taking anything for granted. If you have gone through something traumatic… you fight.”

When Lilly first started learning about Mucosal Melanoma, she was devastated to learn about the disease’s trajectory, but she now says “you remind yourself about all the good instead of bad.” When she started digging, she found hope: “I started finding survivors, blogs, and the good things, the drugs showing improvements.”

The strength to prevail as a caregiver emerges through the love of Lilly’s mother. “This isn’t me.. I am not the one with cancer.”

Lilly discusses the importance of a caregiver’s cancer education. She says you do not want to hear “you just have to fight.” You must “make sure you are educating yourself on the disease itself to be a good caregiver.”

Lilly’s two children – a  7-year-old son and 9-year-old daughter – also share their compassion and desire to make a difference for Mucosal Melanoma. Both children help raise money and awareness by selling stickers and creating lemonade stands in their local community. The money raised by Lilly’s children has been used to buy cookies and sweets for families and friends in the patient waiting room.

In a very personal moment, Lilly shares her sister’s conversation with their mother: “What are you looking at?” Her mother responded “I wonder if I will ever see snow on that tree again.”

 Clinical Trials

Her mother’s words remind Lilly of the importance of research and opening yourself up to all opportunities. “When you deal with such a rare type of cancer, you have a 50-50 shot, and doing clinical trials, it will either work or it won’t.” She says, “If you have a chance at a shot in the dark, you have got to take it. especially with the prognosis.”  Clinical trials are the pathway to uncovering our connection to a cure.

We are in This Together

Lilly shares two important messages for all caregivers:

  • “Make sure you are being your own advocate and find support for yourself.
  • “Do not educate yourself so much that you are afraid to live.”

We are in this together. It is important to remember we all have a voice – we all have a story. Lilly could not have said it better:

Visual Graphic

“I want the world to fight with me. I don’t want to be alone. If we talk about it, we can fight together.”

Cancer Prognosis: A Numbers Game?

 

I am living past my expiration date!

Folloder blogCancer, it would appear, is a numbers game. From the minute each of us receive a diagnosis, we are assaulted with numbers: blood counts, enzymes, proteins, ratios, antigens, mutations and on and on. The numbers can be bewildering and many of us often struggle to wrap our minds around what all of the numbers mean. Quite often, the most daunting number that we encounter is the one related to the median survival from diagnosis. This is the number that I affectionately call the “expiration date.”

We are all familiar with expiration dates because we see so many of them plastered on consumer goods. They are guides to when products are best sold by or consumed by and most of us pay them at least a bit of heed. C’mon… When presented with two cartons of milk, you know that you are going to pick the one with the extra day or two of shelf life, right? But what about the stuff that is already in your fridge? It may be a day or two past its expiration date, but it looks and smells good. And so you drink it because it’s just fine, right? Those expiration dates on the vitamins? Just a guide. Expiration dates on medicine? Most of what is known about drug expiration dates comes from a study conducted by the US Food and Drug Administration at the request of the military. With a large and expensive stockpile of drugs, the military faced tossing out and replacing its drugs every few years. What they found from the study is 90% of more than 100 drugs, both prescription and over-the-counter, were perfectly good to use even 15 years after the expiration date. Turns out, these numbers are not quite the final arbiters of quality that we expect. So what about the expiration dates that cancer patients encounter on their own lives?

Our expiration dates are averages based upon data in the past up to a certain point. They represent a probability of likely average outcome based upon what the medical community knew, factually, up until the point in time represented by the actual data. The expiration dates do not take into account the day by day advances in cancer research and treatment. Further, they do not take into account the individual responses to treatment. Let’s face it: some of us don’t live in the middle of the bell curve from which averages are derived. In all candor, those expiration dates will likely have absolutely nothing to do with your own particular, individual situation. I know that they do not apply to me because I am now, officially past my expiration date.

I was that Type A guy who scoured the Internet in search of data, research and numbers when I got my diagnosis. I was horrified to learn that I was not expected to live to see my grandchildren be born or see my home getting paid off. The numbers were ugly and mean and knocked me off of my game. And they were also wrong. It took me a long time to understand that many of the numbers we deal with only look toward the past because they cannot know the future. And even though my marvelous cancer specialist went to great lengths to tell me to ignore the numbers, to know that I was very likely not going to die from this because we are learning so much, so fast… I stared at the expiration date. Now I am past that date and I am liberated.

In a few weeks I will be back at the hospital for my annual work up. I’m a little grayer. I’m beginning to embrace my inner curmudgeon and I am becoming somewhat set in my ways (the cats must get their treats while I am sitting in my chair at 5:00pm while turning on the local evening news). But I am also past my expiration date. The numbers were wrong. And I get to smile. A lot. In a few short months I will pay off that mortgage. And I know that I will get to welcome my grandchildren into this wonderful world. Even though neither of my daughters are married. Yet!

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.