New Year, New Challenges, New Adventures, Same Solid Rock

I can't believe it's been nearly a 4 weeks since I last updated.  I apologize.  It was just pretty crazy in my world with appointments, family visits, and Christmas prep.  It has been a wonderful month, but busy, nonetheless.  I appreciate you holding out for another update.  Your patience was not in vain!

So, I'm fairly certain I haven't posted since we recieved our good news a few weeks ago.  I have felt the need to explain our good news as I fear many people have been deceived as they don't know the full story.  Not to take away from good news - we certainly had cause to celebrate.  Let me explain:

When I had surgery in November, they did two procedures at once - the wide local excision of the mole site (leaving a 6-inch scar and indent in my left forearm), and then a Sentinel Lymph Node Dissection.  This is done to see if cancer has travelled from the original site to the lymph nodes under my arm.  They inject dye into the melanoma site and using xray, trace where the dye travels to first.  The first lymph nodes to receive the dye are called the sentinel nodes.  They would have also received cancer cells first.  In that first surgery, two sentinel nodes were removed.  One week later, we were told that they had tested positive for cancer.  Having cancer in your lymph nodes immediately moves you into stage III.  At this time we also learned that my CT scan (which checks to see if cancer has spread and metastasized internall) came back clear, with just a few little dots here and there (which is very common for anyone).

Move ahead a few weeks - as soon as we got our yucky results at the end of November from the first surgery, they scheduled the Radical Axillary Lymph Node Dissection (could be called a lymphadenectomy or something like that) to remove and test the rest of the nodes under my left arm.  (You have anywhere from 25-40 nodes there.)  I don't know how many nodes they removed in total, but the news we got two weeks ago was that none of the REST of the lymph nodes have cancer in them.  It would appear that for the time being, I have no cancer in my body.  That is why we celebrated!  At that appointment, we were more nervous than we had been the first time we were getting pathology reports.  She walked in and immediately said (with a smile and a faint tear) "Good news!"  I kind of played the disbelief card for a moment... like I had heard her wrong and she meant, "Good news - your appointment with the doctor has been moved up to...." or something like that.  But now, after asking her to clarify, she confirmed that she meant that no more lymph nodes had cancer in them.  I was thrilled, Jon looked like he wanted to kneel and thank God right then and there.  I'm sure he did (as I did) the whole time we walked out of the building, and it's the first thing we did as a couple when we got to the car.  We kind of have this arrangement after results - talk to God right after, either asking for direction and hope or expressing gratitude for good news.  Then we went to Red Lobster (one of our silly little indulgences), and celebrated with a bottle of cab-merlot, lobster-artichoke dip, and crab-stuffed mushrooms.  It was A LOT of fun to share good news for the first time in a while.  And the way everyone responded with praise to God was a blessing to our whole house.  Mom, Jon, and I loved to read your inspiring and encouraging words as they came streaming in.

Now for reality, just because I want you to know what we know.  These latest results do nothing to improve my "chances" so to speak.  My numbers do not change.  I'm sure it's still good news (made evident by the doctor's smiles and tears) but on paper they don't change much.  Here's what my numbers are for those of you who want to know what I mean when I bring it up:

Stage III Melanoma patients with 3.8mm Clark's level IV ulcerated melanoma (which is what mine was) have a 50-55% chance of survival over 5 years.  Melanoma is an agressive cancer and is quite likely to recur.  When it does recur, it is more likely to develop internally on an organ, like the liver or lungs than on the skin like it did originally.  So, without doing any form of treatment, I have 50-55% chance of survival through 2015.  Those numbers don't thrill us, obviously, but God doesn't work on numbers determined by the medical community.  By the way, one thing to remember is this - if melanoma is going to recur, it is most likely to recur within 5 years (even 2-3 years), hence the 5-year survival rate.  It COULD recur within 10 years, but after 10 years, if it hasn't returned, it most likely won't.

Treatment - we are in the process of deciding between two (or three) treatment options, based on these numbers.  Here's what we're looking at:

Option 1:  No treatment.  Obviously, this means we are relying completly on faith, and perhaps dietary/fitness changes Jon and I are planning to initiate when all the Christmas goodies are gone.  This keeps us at 50-55% survival over 5 years. 

Option 2:  Interferon Alpha-2B.  Some facts about this treatment:

a)  One year program - 5x per week intensive iv infusion for first month, and 3x per week self-injected dose for 11 months

b)  Highly toxic - Interferon kicks your butt.  It's a harsh treatment, and about 25% of patients do not finish the entire program due to blood or liver issues.  Expected side-effects are moderate-extreme fatigue, nausea, depression, and anxiety.  Yay.  Sign me up. 

c)  We discovered that we WOULD be able to set up the iv infusion therapy in Camrose, so I could avoid needing someone to drive us into the University area in Edmonton (congested traffic) in our huge vehicle in the middle of January.  This is MUCH more convenient.

d)  Interferon apparently increases my survival rate by 6-10%.  Not a lot.  And apparently, it does NOT improve my survival rate after 5 years.  The 10 year survival rate is not affected, suggesting that interferon treatment might only postpone problems.  One document I have states that, "Interferon Alpha has been approved because it was demonstrated that it took longer for the disease to come back (for patients receiving this drug), not because it is able to increase the survival of patients treated with interferon."

e)  My melanoma specialist, Dr. Tom Salopek, brought this treatment to my attention at our very first meeting.

Option 3:  Clinical Trial - Ipilimumab.  Some facts about this treatment:

a)  My oncologist, Dr. Mike Smylie, is heading this study up.  It was brought to my attention when we met just a week or two ago.  It is a study being conducted by the EORTC and will take place in many countries throughout the world.  It is sponsored by Bristol-Myers Squibb. 

b)  This drug has been studied in Europe on Stage IV cancer and is seeing quite exciting results.  I don't know numbers for sure, but from my online research, I have seen numbers from 25-45% increase in survival rate.  One would hope that results like that for stage iv would be mirrored in stage iii. 

c)  Three-year program - infusions every three weeks for three months, and then every three months for three years.

d)  Side effects are much more tolerable.  Many have no or very tolerable side effects, some have skin rash, fatigue, and diarrhea, and only a few experince headache, abdominal/colon issues, or headache.

e)  Here's the clincher - this is a double-blind trial.  That means, ladies and gents, that out of the 950 patients in the trial, 475 of us will have a placebo.  Nada.  No drug.  That's the hard part.  The reason for this is that this drug is not yet FDA-approved for stage iii, and Dr. Smylie (et al) would love to get it approved.  The government needs successful numbers before it will approve a drug, and trials are how that's done.  Yes, it feels a little like they are gambling with my life.  However, I do have faith in God, and I ultimately believe that it is He who will determine whether or not I am healed, not a drug.  I want to take advantage of the medical resources that are made available, but in this situation, I feel I can not spend too much time worrying about the whole placebo thing.  Worst case scenario - I get a placebo and I'm still at 50-55%.  (Which is only 6-10% less than if I suffered on interferon for a year, and that's only for the first five years.)

So, with all this information in front of us, Jon and I are on the same page.  We are leaning toward the clinical trial, heading into it with prayers and hope that God would see fit to provide me with the actual drug, and if not, that He would open up another door for us down the road.  We haven't made up our minds for certain, though.  We have until January 12th.  Your prayers are greatly coveted!!!  We need a decision, and we need peace of mind. 

p.s. We also need the melanoma to NOT come back as there is a high chance of recurrence.  NO MORE MELANOMA.  Repeat after me.... no more melanoma.... no more melanoma....

Okay - just a bit more.  If you've made it this far you are a true champion.  Just to keep you up to date - I had a JP drain put in after my surgery on December 7th.  It was still draining lots at my appointment with the surgeon (Dr. Dabbs) two weeks post-surgery, so she left it in, thinking she would remove it at my appointment with her on January 3rd.  On the 23rd it because very painful - like little razorblades cutting into the area when I moved.  Erica and Brent arrived that night, and I headed into the hospital to get checked out.  I had an infection, and was treated with iv therapy.  I went in once a day for iv treatment over Christmas (hence two tubes in my body - one drain and one iv in the elbow of my right arm), and on Sunday morning, as we were getting ready for church, I realized I had no more pain!  Yay - the infection must be going away.  I was getting ready for my shower - I stood up and my drain slid right out.  We went to the hospital instead.  :)  They dressed it up and sent me home, telling me to come back at least once a day as it was still draining lots.  I spent several days with a drenched side feeling quite uncomfy, trying to do nighttime dressing changes at home, and unable to bend my right arm due to the iv, but eventually, the draining started letting up and the iv came out.  I'm feeling pretty good these past few days.  No tubes, no drainage, and no home-dressing changes.  I am still going in every morning to be assessed as the area is red and warm and there is hard tissue under my arm that they are trying to keep an eye on, but I feel great otherwise. 

Mom, Jon, and I were fortunate enough to have Erica and Brent and kids here for a week for Christmas.  Lots of fun but Erica - we forgot about the train cake!!!!!  We had a few dinner dates with wonderful friends this week to help ring in the New Year, and Mom and I de-Christmassed the house yesterday.  I have to admit - the tree made my living room look better.  Tree is better than no tree...

There.... wow.  We've had company (twice) and lunch since I started writing this.  Kudos if you made it through.  God bless you all.  You continue to be instrumental in my positive outlook.  And we continue to strive to know God better - to study and pray and grow closer together as we grow closer to Him.  Thank you for your prayers!  We love you.