Long time no blog?!?!

It's been a very busy last few months in the Martin household. Thankfully we have been living "normal" lives and have had no personal melanoma issues come up.  Unfortunately, several of our friends are struggling with melanoma.  This has been extremely hard for me to juggle.  While I am elated that Steve is doing well and continues to be "NED" (No Evidence of Disease), I can't help but weep for those that we have lost, are losing and are struggling.  Sometimes I find the easiest way to deal with the struggle of emotions is to just back away.  Then I realize that we have so much to offer (hope, knowledge, experience, etc.) that it is not really fair to back away.  I just have to find better ways to juggle my emotions.  

NED!!!

Here is a bit about what has been going on with us for the past 3 months.....

In May, Steven and I were invited by GSK (Glasko Smith Kline) to their Philadelphia headquarters to attend a Bloggers Summit along with a few of our melanoma blogging peers.  This was the first year for this event and I hope they continue it in the future.  I took great pleasure in the fact that "Big Pharma" wanted to talk to bloggers, patients, caregivers, melanoma foundations, etc. about our experiences and our thoughts on what they could do to help "us".  We talked in great detail with suggestions on what we felt was missing in the melanoma world in terms of awareness.  While Steve and I were there, we also did a short on camera interview that GSK will use in the future for melanoma awareness.  I feel like GSK will definitely do their part to help our community raise more awareness.  Which avenue will they choose to use?  I don't know and honestly it doesn't matter.  I applaud their efforts to help battle the beast!!

Steve and I outside GSK Philly offices

Mingling before lunch and the meeting

Melanoma Ribbon Cake

Blogger Summit Roll Call

Jamey Millar, VP GSK Oncology Business Unit

GSK Oncology Pledge

Group photo from the Bloggers Summit

The Bloggers Summit also gave us the unique opportunity to meet several of our melanoma peers in person for the first time.  These are many people that we have built relationships with over the last 2 1/2 years but have never been able to meet in person.  What an incredible experience!!! 

Meeting my dear friend, Martha for the first time!

Drinks with Steve, Martha and Rich

TJ, Martha, Rich, Melanoma Research Alliance, Melanoma Research Foundation

Dinner - Rich, Martha, TJ, Me and Steve

Me and TJ

Me and Rich

Me and Martha....sad to say goodbye :(

In June, Steve and I were invited to attend an event in Atlanta hosted my BMS (Bristol-Myers Squibb).  Another "Big Pharma" wanting to talk to the melanoma community to get ideas on awareness.  Big stuff!  Unfortunately, the event was to be held on the same date as Steve's 3 month results and we didn't want to reschedule all of his scans and appointments so we had to decline.  After learning that Steve is 9 months NED from Yervoy (who BMS is the developer of), they expressed interest in bringing us in in a few months to do some promotional videos for them/Yervoy.  We would love to do that, so hopefully we hear back from them.

Wednesday, June 25th, Steve and I headed to MD Anderson for his 3 month results (he had scans that prior Sunday).  We were so happy to hear he is still no evidence of disease!!!  Steve had 2 biopsies while he was there.  One on the back of his left arm and one on the right side of his upper back.  Steve got the call on Friday that both of these were clear of melanoma.  I believe they said one was atypical and the other was fine.  So, good news there too!  This was not our first time to meet Steve's new melanoma specialist, Dr. Patrick Hwu (he was on rounds several times while Steve was inpatient); however, this was our first time to meet with him in a regular clinical situation.  Dr. Hwu was just as kind, compassionate and amazing as we remembered.  Dr. Hwu seemed confident that Steve is a complete responder to Yervoy.  Dr. Hwu is very highly regarded in melanoma research.  He said that most people that are NED this long after completion of Yervoy go on to be NED for many, many, many years.  He discussed the future of Steve's appointments.  He would like to move from CT scans to PET scans.  He talked about moving to 4 month visits once Steve is 2 years NED, then 6 month appointments when he is 5 years NED and eventually moving to annual appointments.  While talking about all of these "future" accomplishments seems so surreal, the fact of the matter is, it COULD be our reality!  Dr. Hwu seems confident, and he is one of the most knowledgeable melanoma professionals.  So, his confidence gives me hope!  Dr. Hwu also went into great detail with Steve about keeping his immune system healthy.....meditation, more sleep, less drinking, exercising, better diet, less stress, etc.  Yervoy is immunotherapy.  It basically restarts your immune system to allow your immune system to fight the melanoma.  So, part of letting the Yervoy continue to work is by letting his immune system continue to work and be at it's best.  It's definitely a work in progress ;) 

Back of left arm

Upper right back

Arm biopsy

Back Biopsy

We will be back to see Dr. Hwu in September for the next 3 month scans.  I hope you don't hear from me until then :)  Although I do plan to try and blog more about melanoma awareness, issues, etc.

We got to meet up with Kathy, Judy and Ken while at MD Anderson.....love them!!!

Steve and I celebrating NED (after my Zumba class!)

 
Please pray, think positive thoughts, send your love, etc. to my dear friend Kara who is fighting for her life right now.  Also, do the same for my friend Brandi who is fighting to get tumors under control in order to get into a trial. 

My sweet friend, Kara and her family

 

My dear friend, Brandi and her family

***GSK reimbursed my travel and expenses to attend the GSK Melanoma Summit, however, I was not asked to promote GSK or its medicines.  This post is voluntary, represents my own views and I was not paid to write it.***

Surgery tomorrow

In September, Steve had 2 biopsies done of some suspicious moles on his back.  The moles came back negative for melanoma, but severely atypical. The dermatologists at MD Anderson decided it would be best to have surgery on these 2 moles (wide excision).  Tomorrow at noon Steve will have the wide excision on these 2 moles. The information regarding the surgery is in my last blog post, which you can access here. 

Other than surgery tomorrow, life has been pretty calm for us since Steve's last scans.  We went out of town for our daughter Sadie's birthday, we just got back from New Orleans for a Saints football game.  We had a blast! 

This weekend is the AIM at Melanoma walk in North Carolina.  I wish Steve and I were able to attend and meet up with so many of our fellow melanoma warriors/caregivers.  Next year for sure!  If you would like to donate to the walk, please do so here.

Biopsies, surgeries, clear margins........rinse and repeat

Steve had 2 biopsies on his back last Monday, September 16, 2013.  He had one via the "punch" method and one via the "shave" method.  Steve was called with the results today.  Both biopsies came back free of melanoma but were classified as "severely atypical".  According to his dermatologist, "severely atypical" moles have a high chance of developing into melanoma. 

On November 14, 2013 at 2:15 pm, Steve will have a surgery commonly referred to as "wide margin excision" to be sure that they have clear margins on both of the moles.  Even though the moles are not melanoma, MD Anderson is very proactive in severely atypical moles since they carry such a high risk of turning into melanoma.  The procedure is typically an inpatient surgery and takes 1-2 weeks to recover from.  Steve will be left with a 4-5 cm scar in each area.  But what a small price to pay to keep the melanoma at bay!

Info regarding the surgery:

"The procedure is called wide excision.
The surgeon removes the rest of the tumor, including the biopsy site, as well as a surgical margin, (a surrounding area of normal-appearing skin), and the underlying subcutaneous tissue, to make certain the whole tumor has been removed.
The width of the margin taken depends upon the thickness of the primary tumor.
Most surgeons today follow the guidelines adopted and recommended by the National Institutes of Health and the World Health Organization Melanoma Program:

• At least 0.5 centimeter margin in all directions (less than 0.25 inch) 
  

This typically results in a scar at least 4-5 cm (about 2 inches) in length, but it may be longer depending on the location on the skin and the size and orientation of the biopsy site.  Skin grafting may sometimes be required to cover the wound, especially on the face or on the fingers or toes"

When Steve met with the dermatologist last week, they diagnosed him with atypical dysplastic nevus syndrome. People with this diagnoses are anywhere from 10 to 12 times more likely to develop melanoma. 

I will keep everyone updated on Steve's surgery in November.  Until then, we are happy that Steve is NED.  Yesterday, Steve started the Livestrong program at the YMCA.  The program aims to aid cancer patients that are recovering from treatment in rebuilding their strength, agility, and stamina.  He will probably end up missing a few classes due to the surgery, but hopefully that will not affect the effectiveness of this class.