Thursday, January 31, 2013

Yippie for Ipi!!

Yesterday and today Steve had CT scans.  Yesterday of his abdominal/pelvic region and today of his neck.  He was not scheduled to have scans until 3-4 weeks after his last Yervoy (Ipilimumab aka Ipi).
We were taken a little off guard when we looked at his schedule and saw that he had scans on his appointment list for this week.  I spoke with the nurse and PA who both agreed it must be a mistake because when on Ipi scans are not done till 3-4 weeks after the last infusion.  They were going to cancel the scans but of course double checked with the doctor first.  The doctor did indeed want the scans done.  I was very confused and worried as to why he wanted these middle of treatment scans when that is not protocol.  As a matter of fact, I could not find one person who had completed Ipi that had middle of treatment scans. 

Steve waiting to get called back for his scans

We saw the doctor this afternoon and we asked why the scans?  He said since Steve's body acted so crazy back in November, he just wanted to be sure that the Ipi was working and that melanoma wasn't sitting there spreading like wildfire.  Yay for a caring doctor that worries about these types of things even though it is not standard protocol. 

The results?  Great!  The clavicular lymph node has shrunk by about 50% (or more - the final report was not ready) and also the few lung nodules he has shrank by 50% or more also!  And BEST of all, NO NEW DISEASE!!!  Yippie for Ipi :)  I stole that from someone and I don't know who.  But I like the sound of it! 

Dinner after results and before 3rd round of Ipi

Steve has his 3rd infusion of Ipi tonight.  We are currently in the waiting room waiting to be called back.  In 3 more weeks he will have the final infusion and then 3-4 weeks after that he will have more scans to see the end result of the Ipi treatment.  I say 50% complete with treatment and tumors are 50% smaller, well that must mean that after the other 50% of treatment the tumors will be gone!!!  (Yes, I know that is not how it works, but that is the plan!!)

Despite Steve's great news today, we have had a very depressing day.  Back in September, Steven and I were invited to attend the Moon Shots announcement at MD Anderson.  We met Brian Rose and his wife, Lupe.  Steve was instantly inspired by Brian.  Brian had the most positive outlook, they were about the same age, and Brian was fighting this disease head on.  When Steve was in the hospital having some problems, Lupe would message me on Facebook to check on me.  They were both just very inspiring to us both.  This morning, Brian Rose passed away.  We were sitting in the lobby waiting for Steve to get called back for his CT scan when we saw the news on Facebook.  I was stunned.  I pointed to the computer and we were both just silent.  Both of our eyes instantly filled with tears.  We have both battled the tears all day.  RIP Brian.   

Thursday, January 3, 2013

1 year Cancerversary!!

What is a "cancerversary"?  It means so many different things for so many different people.  Some people use it as the anniversary of hearing the words every warrior wants to hear "NO EVIDENCE OF DISEASE" (NED), some people use it as the anniversary of hearing the words no one wants to hear "You have cancer", some people use surgery dates, it is a little different for everyone.

Well, today is Steve's "CANCERVERSARY"!!  One year ago today, Steve had a fine needle biopsy that later confirmed metastatic melanoma.  Later it was confirmed even further that it was Stage IV melanoma.  Survival rates for Stage IV melanoma are grim.  Many reports state less than one year.  When Steve and I were told, we both sobbed.  How could this be?  Why?  This can't be happening?!  So many thoughts raced through our minds.

Over the last year, Steve has had a grueling round of biochemo which entailed him being hospitalized for a week every 3 weeks, a major surgery (and hospitalization) to remove his right adrenal gland and the adrenal tumor attached to it, he has taken Zelboraf (with horrible side effects), he was hospitalized with a very serious virus for 11 days, he had numerous blood transfusions, platelet transfusions, and most recently has started a new drug (Yervoy).  Today Steve went back into the office for the first time in several months.  How fitting that he was able to return to work on his 1 year "Cancerversary".

I am so proud of Steve.  He has had many ups and downs over the past year.  But, he is still here fighting.  The melanoma that he started with last year is the same melanoma he currently has (minus the adrenal gland).  We would have loved to have him NED, but everyone is different and you just have to find the right medication while beating the clock.  Steve's current medication is a 90 minute infusion every 3 weeks for 4 rounds.  Then 4 weeks after the last round he will have scans.  That is a total of FOUR months before we know if the current treatment is working or not.  That is a long time to wait.  But, like I try and remind Steve every day, he is fighting to we are living!  We may not be living the same life we were a year ago, but we are living.

We still find the time and energy to celebrate holidays and birthdays with family.  We attended MD Andersons Moon Shots Announcement.  We still try and squeeze in some dinner dates with friends.  We were able to take the kiddos on a mini vacation this summer.  Steve and I were able to celebrate our 6th wedding anniversary in New Orleans and go to our first Saints game.  Steve and I have been to the casino's a few times during the last year.  We had poker at our house once over the last year.  We were able to take the kids looking at Christmas lights.  Sure, there is plenty we wanted to do but couldn't, but we are still living.  Steve is still fighting. 

In 3 1/2 months, if we find out that this current treatment is not working, we will move on to the next one.  I eat, sleep and breathe melanoma and have the next two treatments lined up if needed.  We are lucky that there is so much research and advancement going on in the melanoma world.  There is still a long, long, long way to go.  But, they are so much further along than even a couple of years ago.

Thank you to everyone who has been there for us over the past year, we sincerely appreciate EVERYTHING and EVERYONE!