Creepers...

Side effects... They are creepers. You're going a long just fine and then boom, there's a side effect and then BANG another! And another! Welcome to my life this last week.
On Thursday I started getting a few of the hive/welts sneaking in. On Friday there were a few more as well as a rash on my back that was starting and joint pain. Then Saturday came the nausea and chills, low low fever (99). Sunday was all of the above plus extreme fatigue and I spent the entire day in bed or in my chair relaxing. Not the most fun of a weekend but you never know what your days will bring when you are actively fighting cancer (one of my biggest struggles with this battle, to say the least).
Called the doctors on Monday morning and tried to downplay the side effects - hoping they would just try some more prednisone for the rash/hive situation and I would just truck through the other issues but they could see right through it all and decided to pause the meds for now and have me come in tomorrow (Wednesday) to go over the plan of action.
Not going to lie, not too happy about this all. On the first round of these meds this year (Mekinist and Tafinlar) I made it 21 days until we stopped the meds. On the new ones (Zelboraf and Cotellic) I made it through an entire month cycle plus 6 days. Which is pretty good in my mind. I'm hoping the doctors just give my body a brief recoup and we restart on the meds and finish at least another month on them. Why you ask? Because once this option is off the table that means there is only 2 more approved treatments available or it is clinical trials. My options become more and more slim. Just doesn't leave a very comforting feeling in me.
As far as the drug that we have been waiting to see if it is cleared through the drug company - that is still in the process. Once we knew we would be trying these drugs we put a hold on the request. It is still an option if we need it to be. The other drug that the insurance denied last will now be approved because I tried the drugs I am currently on - just something that had to be checked off the list before they would approve it. You have to try drug A and drug B in order to receive the awesome drug C. Gotta love insurance companies! But really I don't know what I would do without insurance... such a crazy cycle.

Not sure what tomorrows appointment will bring but I guess we will just have to wait and see. As for today I feel much better than yesterday. I have had actual food and snoozed/relaxed most of the day and planning on going to IHOP later for International Pancake Day to support my sisters company Children's Miracle Network - gotta get out of the house at least once in a day! Even if it is to play with the dog outside.

I'll keep you posted!
One moment at a time...

Snacks and a show... 

Sunday... 

#worldcancerday and cost rant

Today, February 4th, is #worldcancerday. It is a day to not only get people talking about cancer, but to acknowledge all those fighting - whether directly or indirectly. For the past two years this day has fallen close to some very prominent events. Last year I had just been rediagnosed and was getting things in line to start my fight again. This year I am still fighting and I just lost my dear friend to this horrible disease. February is just a very hard month for me it seems. I have major life changing events happen in February - whether I like it all or not. Regardless, World Cancer Day seems to fall perfectly into my cancer story. I am glad there is some more awareness being talked about.

I have been home sick for the past two days and I started to look at some insurance claims and looked at my new med costs. Oh. My. Hell. How are cancer drugs so insanely expensive?! I am so thankful for insurance - I truly don't know what I would do without it. Here are the prices:
My first oral meds - that I didn't finish keep in mind. I still have a 7 day supply...
Mekinist: $10,335.20
Tafinlar: $9,028.70
And my new ones:
Zelboraf (14 day supply): $4,934.49
Cotellic (21 day supply) : $5,910.29

Amazing right? I really should add up how much was spent on me last year, but I truly don't know if I could stomach it. It is definitely more than $750K, easily. That said, with insurance it costs around $550/month out of pocket. For my first month I have been set up on a copay card that brings the cost down substantially.
Anyway, thought it was interesting and so I thought I'd share!

Hoping I start feeling better soon (it isn't side effects, it is a stomach bug) and that life starts mellowing out around me soon. We shall see!

AM Pills: $176.23 PM Pills: $457.67

*if I didn't have insurance that is

Never a Dull Moment

There truly isn't a dull moment in my life sometimes. I feel like I am on a roller coaster at times - go from not having much going on to having everything going on. 

On Thursday and Friday of last week I was sick with side effects and then told to stop my meds for a break. On Monday morning I found out that my mom was taken to the hospital for heart pains the night before. Turns out that she had a 95% blocked artery and she had 2 stints placed. She was in the hospital for 3 days, but now is feeling brand new she says. The doctors say that she barely escaped a major heart attack and that it is good she came in when she did.

I went from sitting with her in the hospital to Huntsman to sit with Mandy, who is getting progressively worse. 

My doctors appointment was Wednesday and we decided to try another type of Braf inhibitors and see if the side effects don't hit me as hard. It is hard because in just this short amount of time the tumors have begun growing, which is very scary to feel and be aware of. I will start the new drugs either Friday or Monday at the latest. My doctors don't seem too concerned about the break in treatment but I can't help but wonder what that will do. If I react with strong side effects there may be an option of switching to a PD1 drug such as the Niv/Ipi combo or Keytruda. We shall see how the new meds go. 

And then I think I have caught a stomach bug... All the fun at once. 

One day, one moment at a time.

Side Effect Party

I decided that all my the possible side effects decided to show up at my party... Meaning I literally got so many different ones all at once.
First lets start with the "hives." I have had these red marks starting to appear since around the 10th of this month. I assumed they were a normal skin reaction to the meds but when I called my nurses to let them know about them they were a bit startled and said they sounded more like hives and then sent me to same day dermatology (which is a great new thing here btw!!) Doctors there said the same and upped my allergy meds and put me on a topical steroid gel. The red marks are not itchy but man they are painful and sensitive. They started to appear more and more and the same ones were there from the start - they didn't come and go. After about a week of using the additional allergy meds and gel the marks weren't getting better and were increasing in size, quantity and sensitivity. My nurses then got me in to see someone in their clinic who works with cancer lesions and he agreed with me that they weren't typical hives - and most likely were something deeper. He took biopsies of two (dang big biopsies I will say) and we will find out more when those come back.

That night I carried on as normal, took my meds and headed to bed. That's when the side effect party started. Now I have been having chills here and there as well as night sweats for a little over a week so I wasn't surprised that I had some chills. Usually they subside with the help of a good amount of blankets and possibly some puppy snuggles. This night was different. They weren't budging. Then came the joint aches and head ache as well as nausea. Then fever. Then more chills. Then vomiting. More fever. More aches. More nausea. It was not a good night/day. I was able to finally eat something around 3pm and then quickly returned to my cocoon and things seemed ok. I was able to reach my medical team and they decided to pull me off the meds for at least the weekend to let my body rest and rule out whether it is med related or a virus I picked up. That night I had chills, fever, joint aches and night sweats like crazy. It didn't last as long thankfully, but it was still a rough night. I am pretty positive it is med related so it makes me nervous whether or not they will let me continue on them going forward or if they don't feel it is safe since most side effects are compounding. I am thinking they will let me know Monday or at my appointment Wednesday. I guess we will have to just wait and see and just work through these side effects for now and enjoy not being on anything for a couple days at the least.

You never know what to expect with cancer... One day at a time!!

Biopsy #1 (6mm punch)

Biopsy #2 (8mm punch)

They look like nothing hear but there are dozens of the red marks that feel like deep, deep bruises

Looks like a bruised ankle but they are the marks

Life of a Patient!Also look at that neck! Can't even see there were tumors there!!

One Year

Today marks one year since I knew for sure my cancer was in fact back. I got the call from my doctor around 5:30pm. I was driving to my friends to grab dinner. Once I saw who was calling I quickly pulled over on the side of the road. As he was explaining what was found, metastatic melanoma, I was numb but my mind was also racing so fast. I knew the second that I heard it was him calling, not his nurses or staff, that it wasn't good news. After we hung up I let up a giant cry, a bawl you'd say. I then called my parents and talked to my mom. I talked with a few people that night as well as my doctors at Huntsman. After sitting on the side of the road for a good hour, I finally headed to my friends and cried some more. We still went and grabbed dinner, I needed to eat.
The next few days were a whirlwind of doctor calls and collecting my thoughts. Scans were scheduled, more biopsies. Then came surgery and then everything else... And then we are here. A year later. I did so many things this past year I never would have thought I was tough enough or brave enough to do. In almost all the situations I didn't really have a choice and just carried on one day at a time, sometimes one minute or second at a time.

I am happy that I have some good news on this year anniversary. My tumors are all so small now, some I can't even feel anymore which is truly amazing. I just am in awe that something could be so big and then just fade away basically. Who knows where they are going, but all I know is I am more comfortable and handling this treatment well. My side effects have been minimal. Very tired the first week, that has diminished in the second week but has been replaced with hives and nausea. The hives aren't normal so they had me go to same day dermatology to get checked out. We are going to manage them and hope they don't get too bothersome - luckily they don't itch like normal hives. And I am sadly just used to being nauseous.

I have had a good time surprising people with the amazing results because they truly are unbelievable. Let's just say that there have been many many happy tears shed.

Here are some pictures to see how little they all are, and how great my jawline looks!

Today 1/14/16

Side

Hives

Kickin' my tumors ass!

I started my new medicine on the morning of Friday 1/1/16. It is a BRaf Inhibitor which means it blocks the BRaf mutation I have in my tumors, then allowing my body to fight it. It is two medicines - Tafinlar twice a day and Mekinist once a day. The trickiest part of taking these meds is they have to be taken on an empty stomach and have to be taken 12 hours apart - lets just say timing dinner has been a bit tricky in my all over life. I am getting used to it though.
On Sunday I realized I had forgotten to take my nerve pain medication in the middle of the day and realized I actually wasn't in as much pain as normal. Same thing happened on Monday. On Monday night I was able to sleep on my side (either one) which is something I haven't been able to do because of severe nerve pain since the beginning of December. On Tuesday morning I decided to take a good look at my tumors and to my disbelief, they have totally gone down!! And I mean a substantial amount. I take tumor pictures often just to mark the growth for myself and for my medical team, so I decided to do a side by side picture:

Bad lighting but the left picture is 1/1/16 and the right is 1/5/16

I am shocked at how fast the medicine is working and my tumors literally are shrinking each day. Here is the picture from last night (1/6/15). 

Still even more. I am amazed and am trying to not get my hopes too high as multiple doctors have told me this is not a permanent solution. For now it is amazing to have the pain relief from them going down as well as having little to no side effects. I have been very tired and had some headaches, but nothing compared to the nerve pain I was having. I am assuming I've been tired because my body is fighting extra hard to shrink the tumors.

We shall see how much they end up shrinking overall! I am amazed with the results in not even a week! Amazing.