Still no decision

Here we are late Tuesday night and there still isn't an action plan in place for the next step in treatment. Can I say though that I have some amazing nurses? I emailed my PA and asked for her to call me and she did, from her vacation in California. I mean how considerate is that? We talked about what I was thinking of going forward, she talked a bit about their thoughts and then said that she would then talk to the doctor today and get back to me. No call today though, so I know I will hear from them tomorrow.
Here are my thoughts.
Just Radiation: Not a fan. If just radiation, then the dosing will be much larger as there is a larger tumor/cells to treat. It will be a re-do of the side effects I had before and I would anticipate severe burns, troubles in my eating/swallowing/mouth with a possibility of a feeding tube. The larger tumor is right about my thyroid so it would hit that hard. The smaller tumor is right on top of my larynx so my radiologist fears it will permanently affect my voice. I also worry that it isn't enough of an attack on the situation.
Surgery then Radiation: This is what I am leaning towards. I don't know the possible complications involved in doing the surgery on the front of my neck, so I don't have a good opinion on what would happen with surgery. As it looks right now it would be just removing these two tumors, which should be relatively noninvasive. Obviously there is possible nerve damage and scaring, but it should be minimal. If they have to do another lymph node dissection then that's a different story. I haven't heard of any additional disease in the right side of neck so I don't see the reason for removing lymph nodes at this time. Also can you go without that many lymph nodes in one main area? Seems a bit crazy to me. After surgery there would be radiation and I have almost all of the listed above concerns. Also to add to the radiation concerns is I would have to go off of my systematic treatment while doing radiation treatment so that is always nerve wracking.
Injectable Treatments: Not on board. An injectable treatment is where they trigger treatment by injecting into the tumor directly, usually using a virus of some sort. It then trains your body to kill those type of cancer cells and begins acting like a vaccine for the rest of the body/tumors/cells. While this sounds good, it actually is poorly timed for my situation. These two tumors have shown they are molecularly different than my other tumors and they are growing while all the others are shrinking in response to my BRaf inhibitor treatment. So with that, the injectable would only treat this exact type of tumor instead of all of them. That is too risky to let them run wild while only focusing on two tumors.

Can only see one tumor here... but you can see just how odd my neck shape is after all the surgeries and treatments. Plus the radiation marker tattoo that looks like a black mole. Also note my dimple chin, beauty mark and "A" necklace that I've worn for 13+ years. 

I am eager to hear what my team suggests. But until then, and until I start whatever is next, I am feeling pretty good. This sinus infection is still lingering but isn't holding me back thankfully. I am trying to cram in as much as I can now since I am pretty sure I will be knocked down in the coming weeks. My trip to San Diego this weekend couldn't have been better timed and I am excited to just go and have a fun time. I am hoping that they clear me to have some cocktails... champagne brunch anyone?! My mind has been running wild lately (for many different reasons, not really on cancer bs) so I need to reset (again). The day before I go I am actually going to see a medium/spiritual counselor. Mediums, if you aren't familiar with them, speak to those who have passed on. I have been before but I had never had anyone close to me who had passed at that time. Now I have several so it should be interesting. I don't have any unanswered questions or messages for those people who have passed, but I just want to see if they come through. Maybe they have some insight. Maybe its all insane? I look at it as entertainment at the least, and take it all with a grain of salt so we shall see how it goes. I will definitely write about it though.

Also I know I have some new followers on here - so hello and thanks for following my journey through this madness! Hope my long-winded-ness doesn't bore you!

Hopefully I will be writing next about the decision on the next treatment (you know, treatment change #14, or is it #15. Lost count...)

Onward, one day at a time.

Good Ol' Snapchat Filters; guessing this is a baby bear? 

Hung my bird feeders this weekend! Hopefully I get lots and lots of hummingbirds!

No Decision, yet

One thing, among many, that I have learned from this whole cancer stuff is that nothing is certain or set in stone. In this case it's getting my mind set on what is next. I had been told they were thinking radiation as the next step. As I have stated many times, I despise radiation and really struggled with it so it took me a bit to get my mind on board that I would be facing that again. I went to my radiation consult and my doctor was not convinced it was the best option. She suggested surgery first and then radiation as it would spare the other things around the tumors and be less invasive. She wanted to present my case at tumor board again and see what the surgeons and general oncologist had to say about it all. I had my radiation simulation scheduled for later that day but was told that it was cancelled as they think I will be doing surgery or an injectable treatment. I also had a CT of my neck so that it was up to date as possible.

Tumor board was on Thursday (yesterday) when I was presented, And nothing was decided. All I know right now is that they are still deciding on what route I should go. For now it seems that radiation is on hold. When talking with my nurses it seems as though they do not feel like an injectable is a great route to go and would rather go with surgery/radiation or just radiation. For now I will stay on the treatment I am on (BRaf inhibitors) until they tell me otherwise. I know that my radiation oncologist is out of the country for 2 weeks so the attending is who I would be dealing with before she gets back. If I am just doing radiation then I will most likely not start until 3 weeks from now. Surgery wouldn't be until then either. My tumors on the front of my neck are still growing; no pain though.

I also have been off of the pain patch for almost 2 weeks now. I have had mild withdraw symptoms since taking it off, but no pain. This is a good sign that the treatment is working and that the bone mets are not increasing. I do get pains in my neck, mostly I'm sure from it overcompensating for the side that doesn't have the muscles to hold up my head. It also doesn't help that I have had a cold/sinus infection for the last week. Hoping to feel better soon.

In October I had to cancel a trip to San Diego, California because of my surgery and treatment. My friends have rebooked the trip and we are going in one week! I will not let anything cancel this trip, that is for sure. I am excited to just get away again. It is with a friend I have known since I was 5 years old. Him and his wife are so generous and are flying me out as well as doing hotel and air. I can't wait!

Today my mom came and planted all of my new vegetables (tomatoes, peppers, beets, carrots, squash, cantelope and a pumpkin) as well as a bunch of dahlias (my favorite flowers). I am hoping that it is a successful garden. I am gonna have to be diligent on the watering!

We will have to see what the doctors think up, until then I am laying low and trying to beat this cold. Early bed time for me.

Little shits

I'm talking about my two new tumors on the front of my neck. Yep, two. They are small (one you can't even see but I can feel it) and they aren't growing fast. But they are growing. This means they aren't responding to the systemic treatment (BRaf Inhibitors) so we need to attack them in a different way. Sadly, that other way is radiation. I was told this was the next option over a week ago and it took me a bit to be alright with it and tell people. Tuesday is when we confirmed that that is the best option going forward. They did ask me what I thought (which they do with all treatments since I control the situation for the most part) and I said "you will never hear the words 'I want radiation' come out of my mouth, so this decision is on you to tell me I am doing it." My doctor said it was a no brainer decision from him as radiation worked on the other park of my neck (for the most part since only one small tumor remains) and having a break in the BRaf pills has actually proved to be more effective in the long term. In order to do radiation I need to be off of the BRaf and do what is called a "washout" which basically means time for it to leave my system, for me that is 7 days before and after radiation. I will find out Monday the plan for when to start radiation and stop the BRaf as well as how many treatments I will be getting. I also will be getting a new mask made and possibly more tattoo markers. They feel that I most likely will not get as many treatments as I did last time (20) and will probably get 5-10. If this is so, then my side effects should be much more mild in comparison. Doesn't hurt that I wont be doing chemo at the same time, like last time. My body will be able to stay stronger through this than it did before, or so I truly am hoping. Good hell I hate radiation though...

Pointing to the second tumor. The bump that looks like an Adams apple is a tumor as well

That said, I may be speaking to 7th and 8th graders about my radiation experiences in the coming weeks.  I have wanted to speak to younger kids about my melanoma in general but man it is a lot to tell! My friend is a science teacher and he suggested to narrow it down (and try and connect it to science) and so I figured radiation would be best and it has the most show and tell props (mask, burn pictures, tattoos, bald spots... you know the works!) I hope to do this in the next few weeks before school is out for the year. Better get my butt in gear!

My hair is growing super fast which is great. As of April 1st I decided to not wear a beanie/hat at all times and that seems like ages ago. I got some steps shaved in and those are pretty much out grown. I have taken a picture each Sunday since the new little hairs started to come in and now have 3 months worth of pictures and it is pretty amazing to see the change. Still holding out for curls though!

Life has gotten a bit more regular. I have had a good amount of daily energy where I don't require a nap each day. I also have had my appetite back and actually am tasting things again. It has been nice to have food that actually tastes how I think it should. It's been a long time coming for sure

I have been getting some things ready to plant in my yard and am excited to watch it all grow, going to plant them this week sometime now that the weather is warmer. I have been seeing a good amount of friends and enjoying feeling good again!

Me and tiny PipSqueek the baby goat

"So, what's next for you?"

I have gotten that questions about 5 times in the last day so I guess I need to clarify what exactly is next for me. 

In my last post I talked about scan results and the new tumor in my neck. Although this is new information it didn't change my treatment plan for now. I am still on the at home chemo which is the BRaf inhibitors. I take meds twice a day at home and don't go up to the hospital for treatment for now. We do monitor my blood work closely though - make sure my liver is behaving, my white count (nuetropenia levels) and my cancer growing marker (which is coming down thankfully.)

As of right now I have blood work this week and they will be discussing me at tumor board again this week. After that I have a follow-up/more blood work on May 2nd. 

I am still on the pain patch, though we are working on lowering the dose and moving to just breakthrough meds. My pain is very minimal now which has been nice. My fatigue has improved and I can make it through the day without a nap most days (though there is a lot of being lazy.) Eating has improved drastically over the last week so I hope to stabilize my weight and hopefully stop losing more weight. Never thought I would be wishing to stop losing weight... Cancer does strange things to you. 

Yesterday was Easter and I enjoyed a brunch with some friends and then a good family dinner. 

Cousins
*you can see my new tumor poking out, basically looks like a small Adams apple

This is a picture of one of my favorite kids (well he is 18 now...) and on his lacrosse helmet he wore my initials. Pretty amazing guy. 

Tony Boutwell

New Tumor. California. Mixed Scan Results.

The last two weeks have been a roller coaster that is for sure. I finally got out of my fever/sleeping/aching and have been able to function semi-normal. Each day has gotten a bit better.

I decided to head to Park City with some girlfriends overnight and I had a great time until mid dinner when my stomach decided it was done. Luckily my friends are great and we just all went back to the condo and hung out and chatted. The day and night were fun and I got some great sunglasses, too.  

I had my appointment on the 5th and the night before I just happened to put my hand on the front of my neck and felt a lump. About the size of a blueberry, but definitely there. These are the moments in this craziness that I just crumble and my mind races and runs. At the appointment we biopsied it and decided to move my scans up to the next day. We decreased my pain patch dose as that may have been contributing heavily to my extreme fatigue.  I also had a followup with my neck surgeon and he officially "released" me from his services. Basically means I don't have to go back unless more surgery is needed/requested.

New tumor is in the middle/front of my neck (where the dots are)

That night I went home and bought a ticket to California to see my best friend. I needed to run away and just take a break from being the cancer patient. I knew that I could go down there and sit on her couch if needed and it would be good and make me happy. If I felt good then it was a bonus! So I decided to keep it a secret from her and surprise her when I got there. It was great to see her face and surprise! We had a great time and I felt really good the whole time. We ate a lot - even me! Went whale/dolphin watching on a fun small boat - didn't see any whales but a good amount of dolphins and it was a great time regardless. That night we met up with a friend we both hadn't seen since 10th grade! It was so much fun to get together and remenise about the crazy times we have had and catch up. The next day I was on my own while everyone was at work and I slept in and then went to the beach and around town. Although I was beyond tired each night I was beyond happy and it is all worth it. Also, they have a new pet pig that was a lot of fun to get to know and snuggle.

 

 
                          

I had to fly back in time for my appointment today to go over scans. Talk about a downer to return for! The results are mixed as yes, the new lump in my neck is cancer but it has a different chemistry than the other tumors. This can mean that the cells are forming differently because of the treatments I've been doing (still am not clear if that is good or bad?) The tumors in my liver are larger BUT all the other spots in my body are smaller. So my brain, lungs, spleen and bones are all shrinking and responding to treatment. We decided to still "ride the wave" as my doctor calls it and stay on the same treatment (BRaf Inhibitors Mekinist and Zelboraf). My white count is low though and so I am nuetropenic so we did a dose reduction for that since we don't want to end up with a hospital visit for it. Overall it was a positive appointment and I am feeling good so I hope to continue on this upswing. I am liking feeling semi-normal again and having energy and an appetite. Also my hair is growing lots!

One sad thing is a blogger I follow (and 20k+ others) Dear Melanoma/Emma Betts, sadly passed away this week. She was 25 and fought stage IV melanoma for over 3 years. Many people tell me to not follow these people as it is just too sad. For me it helps me feel connected to people who are going through the same thing and bring in some reality of things. I may know too much about how the end days of this disease look like, but it doesn't scare me. I guess it just makes me more informed overall.

No big plans coming up. Trying to make it to Moab for a wedding at the beginning of the month. Going to try and work a bit. Do my taxes. Finish some things around the house. Garden/plant some things. All the random things.

Manageable

I have been on the pain patch for just under a week and it is finally starting to kick in. I am still having to take meds for the breakthrough pain, but not nearly as much as I would without the patch. My pain is manageable now, but definitely still there. I just have to be cautious of my actions and movements as sometimes I turn and it sends a shooting pain out of the blue. I can't squat or bend down so things on the ground are tricky. That's where my trusty claw grabber comes in handy! When I had my back surgery three years ago that thing was a life saver and now it is back to prove it's worth once again. It's been helpful getting things from lower in the fridge or in the low drawers around the house.
Right about now is when the BRaf inhibitors usually start to work their magic so I have hopes that they are working hard and getting this progression under control. I hope to see improvement from here on out. These meds are the ones that make me super sensitive to the sun and today I pushed my limits being outside without protection so I bet I'll be a little rosy. I went with a friend to Wheeler Farm to just see the animals and get a little walking in. Since October I haven't been as active as I would like and then having this last month pretty much keeping me in bed or on the couch, my muscles have definitely started to go far far away. I can feel that I am weak and know that I need to work on regaining my basic muscles again. For now it is walking around stores or farms. Little things that will help just wake up my body hopefully. Plus I don't like laying around all the time, even though I know it is necessary at times.

For now I don't have an appointment until the 21st. Hopefully just improve until then.

The sun interfered... 

Puppy Bjorn did really good with all the animals! 

Pain, Pause and Progression.

As I have mentioned before, I have been in some intense pain in my joints. Mostly my hips and pelvis. A few days after my infusion I knew I was dehydrated so I went in to get some fluids. Because of the pain they did Xrays on my hips and pelvis to see if it showed anything. Sadly it did. The spot we knew about in my femur was more prominent and then there were all of these holes forming from the cancer deteriorating the bones in my pelvis. This gives a better understanding on the pain.
As soon as my xrays hit my doctors desk he decided I needed to move up my scans (10 days early) and then see me the following day. I knew that wasn't good. I ran into him and the nurses in the hall while waiting for my scans and I just knew that all this wasn't good and so I broke down. I am just frustrated and really wanted to stick to the Keytruda and have it work. Plus when I am in pain I am so much more vulnerable emotionally and break down much easier.
The appointment went better. These spots are throughout the bones and they are surprised I am able to tolerate as much pain as I have been. That said they prescribed a Fentanyl pain patch (isn't working great so far..) The good news from the appointment is that my lungs are stable and one of the brain tumors is gone and the other is smaller. Little wins. The Keytruda is paused and can be an option in the future. My cancer blood marker is in the 500's and growing (it should be 100ish) so it is just showing that there is some cancer growing or getting ready to grow at a rapid pace. We made the decision to go back on the BRaf inhibitors (debrafinib/mekinist) as we know that works fast at shrinking my tumors. This will hopefully help get my pain in control because I am not doing well with it.
I have been sleeping a lot because of the meds as well as it keeps my pain to a minimum the less I move. Working on staying hydrated and fed though because that's what led me to get dehydrated and needing fluids.
I wont lie, this information makes me upset and vulnerable. I just feel like it is close to being out of control and I'm not ready for that and it scares me. I am working hard on just working on things one day at a time, and it has been a challenge.

Hopefully these meds can reign in my cancer growth and its spreading. For now I am working on pain management.

Only one visible

It's hard to show but if you look at the bones you can see little bubble like spots, those are where the bone is being attacked

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.