Adriana Cooper

I have friends tell me all the time how strong I am but it's hard sometimes when faced with this diagnosis. Two years ago I was Stage IIb and thought I was going to be good for a while...

I will admit, I have not always been playing it safe in the sun. I grew up in southern Ohio, lots of sun and swimming. We laid out with baby oil back then. I did do tanning beds as well. I am pale, freckled and blonde (well my hair is pink right now). So without further ado here is my melanoma story:

At the age of 36, I was diagnosed with Stage IIb on my upper left forearm. Had two nodes removed negative. Had a wide excision done removed a 2cm area. So thought, OK, get back to life. Guess cancer had other plans. I was almost 2yrs cancer free when I noticed a bump just above my elbow not too far from my primary. I went in for a check with my primary doctor and asked him to look.  He removed my first melanoma. He said it was most likely a fatty tissue and would remove it for peace of mind - great, one less thing. I then get the call to call him back ASAP. I knew. The dreaded M word. It was .8cm (the largest fragment). Next step: scans at Seattle Cancer Care and seeing my oncologist. Now I get the results from the scans: 15 spots in my lungs and the largest being 8mm. And 2 small spots in my liver. Meet with a pulmonary physician at University of Washington to do a lung biopsy on one spot, which came back melanoma. Now I was given the diagnosis no one wants - Stage IV metastatic melanoma. I was prepared for it. I have accepted it. I was more reaked out with the first diagnosis. 

It's a scary world to live in when cancer is involved. I have goals set for myself that I wish to accomplish before my time here is finished. I have a wonderful fiance who, without him, I would be going crazy. He is my rock. I have two wonderful children whom I adore. My life's goal is to see them graduate college. I plan on reaching that goal. I will fight to the end. And educate others as I go along. My story is not over.... 

There is no toe tag on my foot.....

Mon, 2014-06-02

Comments

holy moly melanomy - (9/22/2014 - 4:13pm)

This is completely random - I haven't been on this page for a good year or so.  I came on today to see if anyone knows of a support group in the OC where I am.  For some reason, I decided to go to patient stories and I see yours and click on it.  And then I see your story...

I wanted a support group because my latest freak out is a mass that is about an inch or so under my wide excusion scar.  The doctor also suspects that it's a lipoma/fatty tissue - but I am completely terrified for obvious reasons.  Also, in the last two months I have been having sciatic issues on the same left side as the scar/mass and I've never had those issues before in my life.  Not to mention the left leg seems to fall asleep quicker/more often than it has as well.  I have an appointment with a surgeon this Thursday and will insist on removal

So, completely random that I decided to pick your story out.  Did your feel like 'fat'?  Did you ever suspect otherwise?

I hope all is well with you!

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

Carlos P - (10/25/2014 - 10:48am)

Hi Adriana, I am so sorry to learn about your current conditions, keep up faith! I just found out that I am at stage IIb and waiting to see the plastic surgeon to remove more tissue from the side of my neck.

I am worried, and was wondering if you could offer some advise for when I see the surgeon, questions to ask, treatment etc...

 

Carlos

adriana cooper - (12/11/2015 - 12:51am)

SBRT on Arm followed by Yervoy

Failed Yervoy with severe joint and back pain and swelling resulting in need for can end walker for a period of time. Stopped after 3rd infusion.

Found small bone met in sacroiliac area.

On Predizone and Dexamethasone for quite some time for joint pain and BRAFi side effect control.

Zelboraf and Taf/Mek combo worked well for about 11 months(classic results with substantial tumor reduction)

Brain Met revealed and Gamma Knife Treatment 10/2015

Brain Met bleeding and edema 11/2015

12/2015 start Keytruda with swelling and joint pain on day 2 - we are concerned

 

Rob and Adriana

 

Adriana

ZONIE76 - (3/7/2016 - 7:34pm)

I 'm new to this site but I read your story and I'm  thinking of you. I read Dr. Russell Blaylock's newsletter and he recommends Curcumin and Berberine together as they work synergistically against cancer. I have had squamous cell and basal cell ,...too many years in the Arizona sun and have been taking both of these supplements regularly. He says these both work well with chemo treatments and enhance their effectiveness. You should check with your oncologist but these have a lot of research behind them. You get better absorption if you take them with olive oil or some type of fat or black pepper. They also help with inflammation and joint pain. Really helped me with my back pain. Thinking of you.

adriana cooper - (11/7/2016 - 10:11pm)

After responding well to Gamma Knife and complete reduction in lung and sub-q tumors, Adriana was declared "in remission" in Feb. 2016 and taken off Keytruda and had a nice spring and early summer. Unfortunately in July shoulder pain started followed by debilitating sciatic pain, facial pain, and facial palsy. After visiting a homeopath, chiropractor and physical therapist, Adriana was referred to neuro-oncology. In mid September 2016 she was positively diagnosed with leptomeningeal carcinomatosis (LMD). 

On September 27 Adriana had her ommaya placed without particular incident and recovered over the next few days although she continued to have substantial facial and sciatic pain as she has had for some time. On September 30 Adriana had her first Depocyt treatment. This day was also the first time ever that I had to use the wheelchair to get her into and out of the hospital due to the continued pain she was in, heartbreaking for me and frustrating for us both. Her pain meds were increased and the treatment was administered without incidence although I must say it is slightly disturbing seeing fluid being sucked out and put in through the top of your loved ones head. Although side effects of chemical meningitis were described no instructions as to when to call in or take action were given. By late that night neck pain and headache had set in along with her other pain, and fevers starting by noon of October 1. That evening the neck pain was severe and temperature close to 102 much of the time. We increased her Dex at the recommendation of the on call/nurse/neurology resident (middle of the night on a weekend of course) and advised to go to ER if temp stayed above 102. Pain and continued fevers through October 2 and most of October 3. The fevers finally subsided during that night.

On October 4 while still in considerable pain (again in the wheelchair) we visited the oncologist who advised Adriana to cancel further Depocyt treatments as it is “ineffective for melanoma” and will only cause further discomfort and that we will now be focusing on quality of life treatments as there is no cure for LMD. Essentially she had the surgery and treatment for no reason :>(( He confirmed that our research of prognosis of 4-6 weeks un-treated and 6-8 months for treated patients was in fact correct. He also theorized that Adriana has likely had leptomeningeal disease since February 2015 but mis-diagnosed as the symptoms were mistaken to be unusually severe side effects of ipilimumab and masked by the steroids and BRAFi she was switched to at the time. He advised that she see her family (which was already planned) and get affairs in order – the end of life discussion. Although he mentioned hospice he referred us for an appointment with palliative care. He restarted her on Taf/Mek combo and continued Dex to control fevers (a side effect for her during her previous course of Taf/Mek) in hopes of some improvement. If improvement is seen then possible return to Pembro in order to conserve BRAFi for extended use. In my hope for some optimism and in the light that she has had LMD since 2/2015 why not repeat the sequence (or some combination) of BRAFi—Gamma Knife as needed—Pembro-- that has gotten her this far.

Within 5 days of starting Taf/Mek + Dex all of Adriana's pain was gone including neck-head-face and the horrible sciatic pain (lastly diagnosed via MRI as Tarlov cysts) that has plagued her for months. Although she has double vision (hope to see a neuro-opthomologist for some help soon, sooo many specialists) and continued facial palsy on the right and more recently facial muscle atrophy on the right. Our 10 day trip to Ohio to see her family and explain the circumstances went well and was actually relaxing for her. We are now planning a late December commitment ceremony with our family as we find that we can not get married without risking her health insurance, even though my income is very small. I actually asked her to marry me almost 10 years ago and this is long overdue and not something I want to let go undone.

Although things seem dire and the situation some times takes over our emotions, we continue to try and live our lives and get things in order. We strive to have as many experiences, love each other and our families and create as many memories as possible.

Feel free to email harborhits@gmail.com

Rob

 

Adriana