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Notable News – June 2019

It’s official! The nation’s cancer mortality rate continues to decline, says cancer.gov. The finding was revealed in this year’s annual report regarding the status of cancer in the country. The report shows that cancer death rates have continued to decline in men, women, and children from 1999 to 2016. Specifically, lung, bladder, and larynx cancers are decreasing, which is attributed to the decline in tobacco use. Conversely, cancers related to obesity are increasing. The highest overall cancer incidence rates occurred in black men and white women. The lowest rates were among Asian/Pacific Islander men and women. In addition, researchers looked specifically at cancer trends among those aged 20 to 49. In this group women had higher cancer and death rates than men, which is the opposite of the data among all age groups. Breast cancer, thyroid cancer, and melanoma were identified as the most common cancers on the rise among 20 to 49 year old women. The report, published last month in the Journal of the National Cancer Institute, is put together by the National Cancer Institute (NCI), the Centers for Disease Control and Prevention (CDC), the American Cancer Society (ACS), and the North American Association of Central Registries (NAACCR). Find more detailed information about the annual report here.

The decline in cancer deaths just may have a lot to do with the amazing strides being made in understanding cancer and its risk factors, ways to diagnose it, and ways to treat it. Researchers at Yale have made a discovery about how metastasis, the spread of cancer, occurs on the molecular level that could lead to new ways of treating cancer, reports medicalexpress.com. While the study focused on renal cancer, understanding metastasis on the molecular level could lead to new testing and treatment for all types of cancer. Find more information about the study and the metastasis process here.

It’s important to know if you are at risk for certain cancers and having children through IVF may be one of them, reports thesun.co.uk. A 21-year study analyzing over 600,000 Danish women suggests that women who have had children using IVF are more likely to develop breast cancer. In addition, women who had their first child through IVF when they were 40 or older, were 65 percent more likely to develop breast cancer than women of the same age who conceived naturally. The drugs given to women during IVF to stimulate the ovaries may be the culprit. They increase levels of estrogen, a known factor in the occurrence of breast cancer. Make sure you are staying on top of your breast cancer screenings if you had children using IVF, and learn more about the study here.

Also reported by thesun.co.uk, is good news about early detection, specifically for prostate cancer. Scientists have developed a simple urine test that could show signs of prostate cancer five years early. The test, which could be available in as few as five years, looks for changes in specific genes. If the changes are noted, further testing is done. The process would mean that some men would not have to have invasive testing procedures and others would know of their prostate cancer risk earlier. Learn more about the promising new test here.

Finally, of interest this month is an article by theatlantic.com regarding the two technologies that are changing the future of cancer treatment, and the way in which oncologists are looking at treating the disease. The article points to immunotherapy and CAR T-cell therapy as kindler, gentler approaches to cancer treatment. Chemotherapy, which is the most successful treatment to date, as the article points out, can make the treatment process brutal. Oncologists are turning to the new therapies to treat cancer without the harsh side effects that come with chemo. The article is a quick read and it provides hope for anyone who is or may be affected by cancer. That means all of us. Check it out here.

Notable News May 2019

Moving into summertime, for many, means increased sun exposure, so it’s pretty good timing that May, the gateway month to summer, is Skin Cancer Awareness Month. Prevention guidelines can be found at skincancer.org and include staying in the shade, avoiding tanning, and protecting your skin with clothing and sunscreen. More guidelines and tips can be found here. However, as noted in washingtonpost.com, prevention guidelines aren’t exactly universal. It turns out that sunscreen is not effective in preventing melanoma in darker-skinned people. While melanoma is a risk for all skin types, those with dark skin or of African descent, usually develop melanoma known as acral lentiginous melanomas which develops in parts of the body that don’t get much sun exposure, such as the palms of the hands or the soles of the feet. Of course, sunscreen use is still recommended for people with all skin types to prevent other sun-related damage, and it’s important to talk to your skincare professional about whether or not sunscreen is the best prevention option for you. Find out more here.

Summertime also tends to include barbecues and picnics, but you might want to think twice about what food you’re packing for the potluck, according to a new study reported in livescience.com. The study researchers estimated that more than 80,000 U.S. cancer cases diagnosed each year might be related to an unhealthy diet. The diets known to be related to cancer risk are low in whole grains, dairy, fruits, and vegetables, and high in processed meats, red meats, and sugary drinks. The cancers most closely-related to diet were colorectal, cancers of the mouth, pharynx and larynx, uterine cancer, and postmenopausal breast cancer. Adults ages 45 to 64 had the highest rate of diet-related cancer. More information about the study can be found here.

There is also increasing evidence that diet can help with cancer treatment, says theatlantic.com. Doctors are starting to look at how the food we eat could affect the cancer cells in our bodies and how what we eat may assist in treatment or preventing cancer cells from growing. Of course, because cancer is a very varied disease, there is no one diet that is best. Different nutrients, or the absence of them, affect different cancers in different ways. The promise is that doctors are starting to uncover the relationship between foods and cancers and how we can best utilize our diets for good health. More information can be found here.

In addition, straitstimes.com further explores the relationship with food and cancer. Researchers in Singapore found a link between a nutrient known as methionine, often in meat, fish and dairy products, and cancer. They discovered that cancer stem cells use methionine as fuel, but when they “starved” lung cancer cells of methionine for 48 hours, they saw a 94 percent reduction in the size of the tumors. The information is promising for the future of cancer treatment. More information can be found here.

No matter what is in your picnic basket or what kind of sunscreen you use, you can enjoy your summer with the knowledge that you are doing your part in being a hero in your own story — much like a young super hero named Wyatt who, during his fourth round of chemo, learned that his dreams would come true in a music video that involved fast cars, battling the bad guys, and pizza. It’s a feel-good story that feels just right for summer. You can read all about Wyatt here. It’s guaranteed to put a smile on your face as bright as the summer sun.

Surviving Melanoma

I discovered my Melanoma 14 years ago in a hotel mirror. It was at a Courtyard by Marriott where the closet doors were mirrored behind the vanity. I was getting ready for a day filled with important meetings and my back was readily visible in the reflection of the mirror. It was a black pin sized marking. So, small but so obvious. I made a mental note to deal with it when I returned from travel, but one day bled into the next and I never made it a priority. I didn’t think much of it, only that it was black in color and something I had not noticed before.

It was several months later as I sat on the beach enjoingy the warm sun (how ironic since it almost killed me) when a friend mentioned it to me.  She thought I really needed to get it checked out. She said it was really black and concerning…. mental note #2 in the books.  Vacation ended and we headed home.  I made a few calls and since I had never been to a dermatologist I felt it was a daunting task.  I was embarrassed to admit my concern and lack of knowledge…I mean really…it’s just a dark freckle.

But it wasn’t!  Turned out to be a serious case of melanoma – stage 2. I googled it and it scared me even more.  Was I seriously going to die from this pen mark size of a mole?  It seemed impossible.  Denial was my first defense and only strategy. I had pre-op, counseling, operations and treatment and many, many sleepless nights, I’ll be sure to share even more in my future diaries – this is just the cliff notes.  So many emotions to share and victories to celebrate.  I think this will be a learning place.  A place to support and to be inspired.

Yesterday, I found myself in a similar setting (a Courtyard as a matter of fact) and it reminded me of my experience. It was a bit unnerving and while I am thankful to be here to talk about it today – I was filled with uncontrollable anxiety as I witnessed the view of my back…afraid I might see something new. Something so simple yet so impactful.

We live to tell! Sharing my story is therapeutic and my feelings are real.  All of you who read my tale and scribble in my diary make my fears more tolerable and I appreciate each and every one of you every day!

 

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 diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

It’s NOT Just Skin Cancer…

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 diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I’m new to Treatment Diaries and since this is my diary, I want to share some thoughts that are now near and dear to my personal experience with this dreadful condition.  Let me start with what I’ve heard more times than I can count over the past decade and most often when sharing my Melanoma diagnosis with those who are uninformed.  It goes something like this – “What kind of cancer did you have?”  My response, “I was diagnosed with stage III Melanoma.”  The exchange – “Oh I think I’ve heard of that, it’s just skin cancer…right?”  In fact, I’ve had people tell me I was lucky to just have skin cancer.  Quite possibly the one thing you should consider never saying to someone with Melanoma.  Not only is it completely untrue it will do nothing to make the individual with the diagnosis feel any better about their situation.  The truth is, Melanoma is one of the deadliest forms of skin cancer.  It’s not just skin cancer.

So now that we are clear on it’s not just skin cancer, a few things I wish I would have known:

  • Research suggests that approximately 90% of melanoma cases can be linked to exposure to ultraviolet (UV) rays from natural or artificial sources, such as sunlight and indoor tanning beds.
  • However, since melanoma can occur in all melanocytes throughout the body, even those that are never exposed to the sun, UV light cannot be solely responsible for a diagnosis, especially mucosal and ocular melanoma cases.
  • Current research points to a combination of family history, genetics and environmental factors that are also to blame.
  • You can read this Melanoma Fact Sheet for more information!
  • Support for melanoma patients is incredibly important and connecting with those who relate brings much needed encouragement along with valuable insight.

Unlike other cancers, melanoma can often be seen on the skin, making it easier to detect in its early stages. Keeping track of the changes to your skin and seeing a dermatologist on an annual basis can be a lifesaving event. If left undetected, however, melanoma can spread to distant sites or distant organs. Once melanoma has spread to other parts of the body (known as stage IV), it is referred to as metastatic, and is very difficult to treat. In its later stages, melanoma most commonly spreads to the liver, lungs, bones and brain; at this point, the prognosis is very poor.  Again…it’s not just skin cancer.

Skin cancer comes in many forms and for numerous reasons.  Your job is to protect your skin.  Our skin is the biggest most vital organ we have to care for.  We can’t live without it nor can it be replaced.  It’s ours for as long as we live so we need to take the vitality of it seriously.  Stay out of the sun, look for changes and recurring issues to your skin even in areas that never see the sun, see a dermatologist on a regular basis and make sure to wear sunscreen all year around.  It’s not just skin cancer especially when it can kill you.  It’s a serious topic and I feel so very fortunate to be able to share my personal experience.  I hope to be a help to others newly diagnosed and an inspiration to those on the journey.  Let’s kick melanoma to the curb together…

Early Detection of Skin Cancer Matters…

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 diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

TD logo

I am a 32 year old woman- oh wait- 33 now! 32 is when my life changed forever. I noticed a mole on my chest about 2 plus years ago (and keep this in mind- I consider myself a hypochondriac) and I did nothing…. It was flat…then it wasn’t and I did nothing. I would mess with it because it was odd to me and I thought it started bleeding because I messed with it and I did nothing until a few months later. I went to dermatologist and they excised it. On sept 11th 2012, I received a call from my dermatologist ( luckily I was already home and my boyfriend was about to leave for work) and he said something like ” I’m sorry to tell you but you have an aggressive form of skin cancer called malignant melanoma and you need to call Johns Hopkins immediately to schedule surgery”.

TD Feb 2I was in shock and in tears. The next month of my life was the worst I have ever had. Within two weeks I had all consultations, Pre- op requirements and surgery done and it was time to wait for results. For those of you not familiar with melanoma- they removed the area of mole at dermatology office but then you have to get a wide excision so cancer will not come back in the area and then a sentinel node biopsy which through tests determine where the cancer is most likely to spread if it has already spread to lymph nodes. I was considered stage 1b at this point and I guess if it spreads to lymph nodes then you jump to stage 3. Also, melanoma does not have great survival rates – apparently it does not have an effective treatment like other cancers do so what I thought was just ” skin cancer” can kill me and does kill young people quite often. Needless to say I was scared shitless- facing mortality before even getting married. In fact, I feel like I was just starting my life.

I started dating the love of my life only 2 1/2 years before and we were having the time of our lives. The universe was on my side…. But this changed
everything! The wait was the worst- please don’t spread….. And it didn’t! Now while everyone celebrates I’m cancer free- I know that the beast is a bastard and it can come back in lymph nodes and organs or on the skin again and the fight starts again. I’m waiting for the other shoe to drop and looking for resources and outlets all the time for my anxiety or peace of mind. I’m pissed people think it’s just skin cancer but why would they… I did. Educate! Awareness is where the cure for melanoma is right now. Especially in this jersey shore era

A few months later….

I hate you sun

So this is supposed to be a Pre- valentine romantic weekend in a lovely mountain town cabin we frequent…. So why am I crying while the boyfriend is showering?? Because these melanoma stories are heartbreaking. Young men and women dying while their parents and husbands/ wives are caregivers until the last moment. It’s terrifying that I will never know if all of it is gone- until it comes back. While we celebrate our love this weekend it’s terrifying that we may never be able to have a baby (I’ve been reading a lot about how pregnancy hormones can accelerate any cancer- thanks jackass cancer!). My liver results came back as fatty liver so my diet needs to resume: / but yay! No random melanoma in liver! Now I wait for results from cervical biopsy which I get on Wednesday and if all is well than I can breathe again for 2-3 weeks before foot doctor and dermatology appointments.

Back to the reason I am posting…. Since I was diagnosed in September 2012- I have spent 2 days outside- only 2 in over 4 months- because I HATE the sun! So now we are in a lovely town with woods and walking to be done… And I didn’t even bring sunscreen! Ummmm….. Did I forget the sun and melanoma are evil? Did I think my SPF moisturizer would cover my whole body for a day outside? I hate that melanoma has ruined my typical behavior. Now we have to hunt down a hat and sunscreen because the sun is a beotch to my skin and I always knew that but a little pink never bothered me before… Any who….Now I’m going to read my boyfriend the melanoma blog that had me in tears so he is reminded like I am daily of this cancer crap. Ps I will have a lovely weekend but needed to yell at the sun a little

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.

 

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.

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.”

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.

Update on Melanoma Town Meeting for Patients Live Streamed!

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Update on Melanoma: Today’s Research, Tomorrow’s Medicine was the title of the Patient Empowerment Network town meeting for melanoma patients, families and caregivers.

This meeting took place in Phoenix, AZ on Saturday, March 28th. It was live streamed (which is what I did, from my home in Charlottesville, Virginia!) and Carol Preston was a great designated host for the online audience.

The Expert Panel

The Expert Panel

The panel of experts (Dr Wong from USC Norris Comprehensive Cancer Center, Dr Patel from MD Anderson, and Dr Gimbel from Banner/MD Anderson) first discussed the disease of melanoma, its biology and the various treatments possible, including chemotherapy, biochemotherapy, targeted therapies and immuno-therapies.

All doctors agreed that there has been a vast amount of progress in melanoma. What was true yesterday is not true today. Melanoma demands a team approach of possible surgery, radiation, and the various medical therapies. And of course, all patients are different and react differently. Patients have to find the right doctor and the right treatment.Screen Shot 2015-03-28 at 1.24.43 PM

And a call to action from all doctors: melanoma is increasing. In the US, one person every hour dies from melanoma. And this number is increasing. Tell your friends and your peers. Protect your children. And everyone should have their skin checked yearly by a dermatologist.

The panel discussed clinical trials at length. All agreed that trials were a great way for patients to get the latest treatment, but they were different to find and to navigate. “There is work to be done here,” Dr Patel said. Patients should use their doctor, their provider, Patient Advocacy Groups and online sites to find clinical trials that could benefit them.

TJ Sharp and Martha Bishop, both melanoma survivors, joined the panel and spoke about their experience with clinical trials. After several attempts, they both found a clinical trial that was working for them. They are both doing well. They both spoke about their journey, how they had to really research to find the best doctor and the best treatment for them. They emphasized that patients need to be persistent and keep asking questions and finding answers. They have to look for information, understand their disease and make a conscious effort to educate and empower themselves.

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Carol Preston interviews Dr Wong

During the breakout sessions, Carol Preston interviewed both patient panelists and doctor panelists, often soliciting questions from the online audience.

In the afternoon, Rena Szabo, a psychologist at Banner/MD Anderson joined the panel and lifestyle issues were discussed. The importance of leading a balanced lifestyle and having a good support system were emphasized. TJ and Martha agreed that family, faith and hope played a large part in their cancer journey. Living each day at a time was how they got through the early days of the cancer diagnosis. Rena talked about the mind/body connection and how important it was to have a good mental attitude and good social and emotional health while dealing with cancer.

The meeting ended with a Q&A session with questions from the live audience and also from the online viewers.

Click here to see the slides from this event presentation.

Be sure and check back with us on the Update on Melanoma page to view videos from this meeting. Videos will be posted as they are edited.