Wednesday, July 2, 2014

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.***

3 comments:

  1. My husband has stage iv melanoma and is participating in a clinical trial. So far he has had 5 weeks of dabrafenib and 2 yervoy infusions. His first scan since trial began is in 2 weeks. We are very nervous but when I read your blog I was thrilled. it gives me some hope. Thank you for sharing.

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  2. You are beautiful people and it's wonderful you have not just recovered quietly, but are now actively combating skin cancer with education and optimism!

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  3. Thank you so much for sharing your story. My son in law was diagnosed stage 4 melanoma in March of this year. He and my daughter have been married almost 2 years, had a new baby in February of this year, then he was diagnosed when their new baby was 6 weeks old. He is starting treatment #3 of yervoy (and several chemos) next week. I pray we have the same good results you had!

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