Ready, Set, Treatment type #15

Man I am a slacker in updating lately, guess that just means I'be been busy doing other things, good and bad. Here's what's been going on...

Scan results and such...
I had my appointment with my general oncologist to go over the scans and decide what we are doing next. As far as scan results go - relatively stable. There are some lung mets/lesions that are larger but most are the same or smaller. Liver, spleen and bones are all stable, if not improving. Front of my neck is obviously larger. My brain tumors are both smaller and there aren't any new tumors which is great.
Now treatment options...
It may seem that if things are stable, for the most part, then why not continue on what I'm on? Well because it isn't working on everything, it isn't safe to stay on the same treatment. We talked about the options in front of me and we decided to NOT do surgery right now and to restart Keytruda (Pembrolizumab) to see if that will take care of everything. Radiation isn't ideal, surgery just takes care of the problem temporarily, and I sadly do not qualify for many trials due to my past issues with my liver from treatments. We also talked about adding TVEC (a version of the herpes simplex virus) injections into my tumor on my neck. They knew my insurance would deny the injections, so we are applying for drug assistance. Keytruda is a good enough attack, but adding TVEC would just be that much better. I stopped the BRaf inhibitors and started Keytruda yesterday. Feel pretty good, just tired but that could be from having a fun weekend.

Treatment #15, Day one

Now to tell you about the fun parts of the past week. Last Thursday I knocked off one of the items on my bucket list - to speak to younger kids about my journey and sun safety in general. My friend teaches 7th graders and let me talk to the kids. I'm not going to lie, my goal was to scare them a bit so they stay away from tanning beds as well as lather up on sunscreen this summer. It went well - even when the power was out for almost the whole day. Not so fun when a lot of your presentation is based on pictures and videos and such! I did well talking for the entire class and we made them check their skin for moles and to just get familiar with their spots so they will know if they change. I also had them give me some more ideas for my bucket list. Man I got some good suggestions! Lets just say skydiving is the most suggested; not so sure on completing that!

Eat Eggs and Waffles. My type of bucket list item

This past weekend was my favorite time of year - Pride Weekend. Gay pride has been something I have gone to for 11 years now and love every minute of it. I am proud to be a gay ally and it makes me happy to see the support grow each year. This year we did the festival on Saturday and then the parade and a BBQ on Sunday. The parade is always fun, but man it was so hot this year! I started not feeling so great so I took a break inside a bar to cool down and get some more water in me. Heat just takes it out of me. After the parade we BBQ'd and relaxed for the day. Happy I was able to make it there one more year!

I decided to make a sign this year. Sadly it is the truth. No takers lol

This weekend I am headed to Portland! It is a last minute trip but it is shaping up to be a fun time. Tyler and Spencer were already going, Megg was going for work at the same time. I had a flight voucher. It all just lined up too well! Brooke made it work to go as well so I am excited for a fun adventure in the Pacific North West. I have never been so it will be fun to go somewhere new. Pictures to follow!

Added to the stack today... Eff You See Kay. 

Went on a little stroll in the mountains after brunch with a friend

Went to a Paint Mixer and painted my pups (well my parents and sisters pups)

My friends new company, Villmark. She chose me to model one of her neck warmers - check them out!

Scanxiety

The never dull life of a stage IV melanoma patient...
This week I had my scans and appointments and chemo scheduled. I don't know if I have been as anxious about scans as I was this time around just because it holds some solid weight in what the next options are. Although I have been feeling alright with things and haven't felt any new tumor growth in my neck, you never know with the rest of your body.
I was able to get down the nasty contrast they make you drink and was able to do the scans without problems luckily.
My appointments were early the next day. Turns out that I am stable again which is great news, just besides my brain. There is some toss up as to whether my first brain tumor hemorrhaged or is just flaring from the treatment, but either way is larger. I am not having any side effects in relation to that so we will just continue to watch it closely. My lung nodules are the same size if not smaller and then my neck has just one area that we are going to biopsy to see if it is tumor or scar tissue. It is around my parotid gland. With all this news we decided to no longer do the current chemo regimen and switch to Keytruda (Pembro). This is the drug that Jimmy Carter was on and has kept him in remission for almost a year now. We have avoided going on this because of my sensitive liver but the doctors say that hopefully since resetting so many cells that it wont be as sensitive now but we will continually check my blood levels and see where we are. Keytruda is also the very last approved treatment for my cancer. After this it will be me going back to other options or adding clinical trials to the mix. My insurance is pushing back on it right now but we are hoping to get it approved and start treatment next week.
Although I am excited to see how Keytruda works for me I am also very nervous about my liver and this being the last option technically. Just puts worry into my head. My liver now is great and actually low so that is a good starting spot. I will be happy to get my hair back too, can't wait to see the little hairs start growing again! I should also feel pretty good on the treatment in comparison to chemo so it makes me hopeful that I can begin working again and just getting back to life. Chemo life isn't so great, it's a very tired existence! The treatment is given every 3 weeks by outpatient infusion and I can be on it for up to 2 years. Treatment option #12 I'm coming for you!

Monday also marked one year since Mandy passed away. Definitely a bittersweet weekend and day. I had dinner with her mom that Saturday and then was at the hospital on Monday when they came to do a pay it forward to the people on the 4th floor. It was so great to see them all and get hugs on that day in particular. They have been so great in my journey that I just can't imagine it without them. And I really can't believe it has been a year already. I am planning on getting some glitter nails or something done this week to just have the reminder of that sweet girls smiling face (and now that I don't have anymore chemo planned I can have them done again! Who'd ever think you shouldn't get nails done if you are on treatment?!)  Love you Mandy.

As for the rest of my life there isn't much going on. I have been trying really hard at eating and keeping weight on but it has been really hard. I lost another 5lbs in 3 weeks. While I am loving shrinking and all, I know it isn't a healthy weight loss so it isn't ideal. Also there is a high chance of steroids in my future so I can't get too used to this smaller figure. Things just still aren't tasting like much and then things I liked 2 weeks ago aren't good now and it is just weird! Still working hard on it though.
I am also trying to get my second bedroom/storage area all situated and organized. I am completely a hoarder that doesn't know what to do with some things. Lets just say a WHOLE lot has been donated!
I got some fish ... then they all died... so I got a single betta. Gus Gus is doing good so far, almost 5 days in and going strong!

Also it is the last day to order the #melafreakinoma shirts from booster.com/notjustskincancer  they are so dang comfy that there has been 4 or 5 people ordering doubles! Yay for awareness and comfort!

One chemo and 3 radiation visits down...

Life has decided to see how much I can handle without fully losing it lately. And it has been a lot.

On top of moving into my own place (oh my, the unpacking is a disaster!) I had scans, appointments, the election, a tooth pulled, radiation consults, doctors appointments, radiation and chemo. 

Lets talk about scans and results. Scans now are definitely more stressful just because I know there is disease and so it isn't a matter of if there is it is a matter of if there is more. Sadly on these scans there is more. My neck is looking good after surgery but there is a slight shadow that they need to rule out. What they are ruling out is whether or not it has spread to my jaw bone. In order to determine this I will be having a bone scan on Monday. I am not showing any signs or symptoms that this is what is happening, but again, we have to rule it out. As for my lungs they are stable still, unchanged. My brain has grown and there is an additional lesion. So there are two brain tumors in there. Both are small enough and in positions that I shouldn't feel any symptoms from which is reassuring. Because I now have a second brain lesion insurance has approved my SRS brain radiation and we will be doing that in the next coming weeks. 

I went in to what I thought was just a trial run of radiation but ended up being actual treatment. There is a lot of lining up and measuring and such and then the actually radiation (if all goes as planned) is about 10 minutes. I have now had 3 of my 20 sessions. I can feel a little tightening in the skin and heat, so we shall see how the remaining sessions go.

You can see the impressions left on my forehead from the mask

Chemo was a long day as well but things have been good so far. I got there at 8:20 and drugs didn't start until 11:30. There are a lot of labs and pre-drugs you need to take before starting the actual chemo so things take a real long time. A lot of hurry up and wait. The chemo I am receiving is new for me and is called Carbo-Taxol, a combination of two drugs. It is a very common chemo combo (say that a few times fast) for many cancers so we have a good idea of what to expect. So far I have felt pretty good. I have been tired mostly and have some waves of nausea but it is all managable. Hair should be starting to fall out around the 30th I'm expecting, usually 20-21 days after infusion. Even though I know it is coming, I am not really ready for it. again. I know it will grow back, but it is just such a blow to my confidence regardless, no matter how positive you try and stay. I am happy though that it is going to be winter and I can wear warm beanies the whole time. 

Now to the election. I am proud to say that I voted for Hillary Clinton to be the next, and first female, president. I was so beyond excited that I got to vote for a female to run our nation and was also excited the polls weren't too chaotic when I went. Emotions were high for everyone - on both sides so the day was a little stressful. I wore a silly shirt (Timberlake/Fallon 2016)

 to lighten the mood which helped a bit. And then the polls started closing, and being called. And all you could see was red states/victories. Just like that I felt punched in the gut and America elected Donald Trump to be the president. I read the news when I rolled over in bed at 2:12 am and saw it was called and am surprised I was able to fall back asleep. In the morning it took a lot for me to get up and at 'em for my appointments as I just couldn't believe it. And then it hit me like a brick. I could be without health insurance sooner than later, all because of the person in office. I literally felt at that moment that he held my life in his hands. I have been beyond lucky to have not had to work full time or at all while fighting this fight and it is all due to the luxury of the Affordable Care Act (Obamacare) without it I was denied coverage for being a preexisting condition and I had to work in order to be covered at all. I just felt in that moment that I had been stripped of my right to fight this the way I want to fight it, to treat it as a full time job - kicking cancers ass. And so the tears came, and they didn't stop coming for a long while. I asked my doctors while they were telling me I may have bone lesions as well as additional brain lesions, what I will do if I lose my insurance? I know nothing happens overnight, but in that moment I felt less than, I felt like a target and in a sense a minority. I truly don't know the last time I cried that hard and for that long. As the dust has settled in the past 5 days since the election, emotions are still high and questions are still being asked. He has said he wouldn't appeal the entire law, and keep the preexisting conditions as a non-issue going forward, which is good. Still doesn't mean I am not still terrified for what is to come. I just know that I have to keep up my fight here and hope that it will be able to continue.

Things are finally getting settled in my new place and slowly there are less and less boxes to go through. I am still on the hunt for a couch but I have my bed and lounge chair so I am good for a bit. TV is up, just need to get the DVD player working and get some internet finally and we will be in business! My family and friends have been so great and helpful with everything, seriously would be a disaster if it weren't for them.

Surgery

It has now been 4 days since surgery and I am attempting to type on my computer - so far so good but can tell it will be short lived.

With me for 4 major inpatient stays 

Right before surgery I had to have a quick CT scan so there was a bit of a shuffle which helped keep my mind off of things. I definitely was emotional though. My friends sent me some great things to keep me distracted though - pictures of puppies, videos of my favorite little guys and then of course Justin Timberlake. Before I knew it I was out, didn't even get to the counting down part! 

When I woke up I had this insane pain - in the heel of my foot! Like crazy pain, enough that I was kicking and screaming. Yes, screaming. I was relieved at that moment that I hadn't lost my ability to talk. But man my foot killed. It was most likely propped up at a weird angle for the 5 1/2 hr surgery and then once it moved and got blood flow it freaked out. Me screaming also meant that I was able to swallow as well. I then smiled and most of the smile works, just a bit of my lower lip is stunned and should hopefully come back. This happened with my last surgery and it took about 2 months to come back. Knowing that it will most likely come back makes it easier to accept.

Before surgery to compare

Before surgery to compare

WARNING - SCAR PICTURES BELOW!

Surgery went really really good. Dr. Monroe said he believes he got every tumor out as well as any affected lymph nodes. He dissected the old scar as well and was able to keep the new scar minimal. I made him take a picture of the tumors and show me them when I was awake - pretty insane. He was emailing them to me but somehow that got messed up. I hope to get them tomorrow to post. It was pretty interesting as some of the lymph nodes and tumors are black while the others were not. That's the melanoma in them. The scar is larger but the sutures/stitches are tighter so I am thinking it will heal even better than my last one. I have a drain that is working pretty well, having some minor issues with it but nothing too big.

Day One - right after surgery

Day One - right after surgery

Day Two - still in the hospital

I was in the hospital for 2 nights and now have been home for 2 nights. My oxygen level tends to drop when I sleep while on pain meds so we decided I should have supplemental oxygen at home for when I am asleep. It isn't too bad, I just hope it isn't a permanent thing.

Day Three - At home after a shower

Day Three - at home, after a shower

The pain isn't too intense - it is there for sure, but not what I had expected. There is a lot of surface skin nerve damage so I am not sure I am truly feeling all the pain that I am actually having, which is one benefit to nerve damage. I have been keeping up on a schedule for my pain meds and things haven't been too rough. I have some limited range of motion but I feel a lot of that is swelling and we can work on it to improve it. Swelling has been the worst the last two days so I have been trying to drink as much water as I can and move as much as my energy will allow - which hasn't been much. I have been sleeping a ton. I know you heal when you sleep so that makes sense, but man I'm exhausted.

This came in handy for my new diet! Just no chocolate dipped ones for me this time

They had to cut one of the bile ducts in that area that regulates fat in your blood stream so because of that I am on a NO fat diet. Like zero fat, nada. Not so easy to do when you can't chew much since most of the fat free (natural) things are vegetables. We are finding recipes and tricks though and for now the nonfat yogurt, cereal, milk and fruits have done ok. Basically on a dairy diet. Like I said, we are working on it.

And this note made me chuckle

And that is about all I can handle of holding up my arm to type, but I feel like I did a pretty good job! 

Busy two+ weeks without a blog update = super long update

Hello blog followers!
I knew I had been slacking on blog posting but didn't realize it had been over two weeks. . Sorry! I have been pretty busy though so I feel like I have a valid excuse - and it isn't because I wasn't feeling good which is great!

After the last post I started the liver med (8/18) and haven't had any side effects from it. After not even a week on the meds my liver levels went down by almost half! Pretty great news. They are currently still trending down but just not as fast as the first week, but moving in the right direction. When I started these meds I had been off of cancer treatment for about 2 weeks and my tumors had started to sprout in my neck once again. And they started to grow fast.  First picture is 8/16, second 8/24, third 8/27.

As the tumors grow the more they press on nerves to then comes the nerve meds and pain meds. I had an appointment on the 24th with the neurosurgery radiation oncologist and messaged my general oncologists that morning and said that my tumors were growing like crazy and they should look at them while I am at my other appointment. Luckily they got me in and we decided we need to get me on a treatment asap. We decided to do a new CT scan and then have me presented at tumor board again that week. Tumor board is where my entire team (surgical oncologist, general oncologist, radiation oncologist and nurses as well as other people in the melanoma field) get together and discuss my entire past and what we should do going forward. It is a giant powwow with me as the focus. Apparently there was a very lively conversation about me and a lot of ideas of what to do and the best course of action. Now remember we have to still think of my damn liver and how it is responding to things. The end conclusion they came to is to restart me on the first BRaf inhibitors (Debrafanib/Mekinist) as I didn't have a liver reaction to this combo while I was on it. This will also shrink my tumors and reduce my pain. If all goes as planned it will give my liver some more time to heal and react to the liver meds as well as treating my neck (lungs and hopefully brain too). Then they suggesting that I meet with a surgeon to possibly have them removed once they get smaller so it is less invasive. As much as I don't want another surgery it may be good to get the "roots" of these out. Then after surgery I would follow up with radiation of my neck. This I am not happy about but at this point I have to put something aside and do all I can to fight this. I restarted the BRaf meds and the tumors started shrinking like crazy almost instantly, which means the pain started shrinking too. So great!

First picture is 8/27, second is 8/28 (Pretty crazy right?) and the third is 8/31.

As for my CT results, there was obviously growth in my neck. My lung tumors haven't progressed much if at all. There are still the 10 tumors, but they haven't changed much in size which is good. We also decided to postpone the SRS Radiation (brain radiation) for a couple reasons. One, I needed to get my pain under control and so we started these meds, and I can't be on them if I do radiation as it interferes somehow. Also we are still fighting insurance and the appeal can take around 30 days to get settled. I had a new MRI done and my brain tumor has grown by 2mm, so it is now 6mm. Considering how fast and large my neck grows (easily 5CM in weeks) this isn't much but it is still growth. We decided to be on these meds for 4 weeks and then redo my MRI and if it is still growing we will pause these meds and do the SRS (with or without insurance approval, we'll figure it out). The BRaf inhibitors have a 40% success rate of crossing the blood brain barrier so we will give it a couple weeks to do that and if it hasn't then we will treat the brain tumor with the SRS Radiation. The waiting will give the liver meds more time to work, will give the BRaf a chance to hit the brain and time for the insurance company to have some compassion and approve the radiation. As bad as it sounds to postpone treatment on my brain, it is actually in our best interest overall. 

I have also started to taper down on the steroids again. If all goes as planned I will be fully off of them in two weeks. This girl is excited!

Wow, that was a long update! Hope you are still reading to this point.. if so, good job! I am going to be posting all the fun things I've been doing outside of cancer soon. And it is a lot! 

As always, thank you for following this trek and all the ups and downs (not just the tumors!) 

oxoxo

 

I was sent home with my port accessed.. that was an interesting conversation starter! 

Stage IV

What I have fought so hard for 7.5 years to avoid is now a reality – I am stage IV. 

I had scans early last month and the results weren’t good. The cancer has spread past my neck. I have a small tumor (4mm) in my brain and around 10 even smaller ones in my lungs.

Right now we are going to put our focus on the brain lesion and treat that with a one-time blast of radiation called stereotactic radiosurgery (SRS). This won’t happen for another week, most likely two, and I shouldn’t have too bad of side effects from it – fatigue mostly it looks like. The lung lesions are most likely undetectable now with the treatment I am on, but we won’t know for sure until the next scans which will be in another 4-6 weeks.

I also had an appointment today to go over the next steps (radiation, treatments, etc.) and to check my liver. Well, sadly my liver has spiked again and I am admitted to Huntsman once again for observation. For some reason my liver is not tolerating any treatment I am on so they are bringing on the hematology/liver team to hopefully figure it all out. For now, we have just thrown a lot of steroids at the liver and it worked for the most part but isn’t a long term solution (and my sanity and puffy cheeks need a break from them!) and we need to have my liver tolerate the cancer drugs. I feel so silly being in the hospital when I feel just fine but they are worried that the liver levels are going to continue to increase over the next 24 hours so they need to have me under observation (and some more steroids for the time being.) I will be here for at least a day they are thinking.

I have NO symptoms or side effects from either. No pain, no issues. I wouldn’t know they were there unless I had scans. 

I have known since July 17th, so I have been sitting in the information and just processing things. I didn't want to post anything until I knew more details and I also wanted to enjoy the things I had already planned without being the center of attention and focus. I also didn't want it to be real, and once it is posted, it definitely is real. Thank you for understanding why I held on to the news for as long as I have.

This news isn't fun for anyone. It is the type of news that makes your best friend get in her car the next day and drive from California to see you and be here for you. It is news that you try and wrap your head around and realize that really will never happen. 

What I do know is that this news wont stop me from living my life and carrying on. I wont put things on hold because of this change, I will keep on keeping on. Making plans as I can. Obviously priorities will change and re-position, but in a good way. Probably how they always should have been, Basically everything changes while nothing changes. 

Day One, Treatment Option 6 aka Treatment Option 4 act 2

Today is day one again. I have started the BRaf inhibitors once again so that I am on a treatment while we wait for some other options to be available. I am eager to see these start working as fast as they did the first time around and get some pain relief. Like I mentioned in the last post, it is getting a bit uncontrollable.

I had my liver checked again yesterday and the enzymes are coming down still, just very slowly. One is 118 (3x too high) and the other is still 400+ (supposed to be 60). They are coming down which we want but the longer they are up the longer I am on steroids. I know I am complaining a lot about the steroids, but man it is something else! Yesterday I was wired and in my form of "roid rage" for sure, just uneasy and buzzing. Don't like those days.

Scans/Restaging has been scheduled for this Saturday (exactly how I want to spend my afternoon) so here's hoping that things are still localized in my neck. Scanxiety is a real thing, and I am blocking it out until that day. Which I have realized I will have to have some sort of sedation for since I can't lay flat for that long without my neck burning a hole in my head... That should be interesting!

One thing to mention - I am sipping on a cup of coffee. Sounds mundane, but since my surgery in 2015 my body just doesn't want anything to do with it. I have tried a couple times to revisit it, but no luck. I am trying again today, it actually sounded semi good. I have a quarter of a cup, we'll see if I make it though it! Ha. Little things.

Happy day one x 6 to all my lovely followers - I am learning I don't know many of you! So fascinating!

Scanxiety with a side of good news!

Today is a big day for a couple reasons. One it is February 24 (see previous post) and two I got my newest scan results and had a doctor visit. Leading up to this appointment I have felt very good and have been just waiting to see if side effects are going to hit me from these new meds (Zelboraf and Cotellic). It has been a waiting game for sure, but so far there hasn't really been anything worth noting.
I had an MRI and a CT scan yesterday, as you know they are not my favorite. I generally don't like them because they make me sick but now there is the scanxiety associated with scans and so they just aren't my favorite. I shouldn't have been as nervous for these scans since I can visually and physically see that the medicine is working wonders but that doesn't mean my mind doesn't wander. I still have the freshness of losing my dear friend to this same disease and it just makes me nervous. Also, they say that if one tumor has a BRaf mutation then all of them do (that's what the meds inhibit is the growth of this mutation) but what if a new one popped up and happened to not have the mutation, then what?! The what ifs tend to rule your mind before you know it. I was able to calm them to a degree, but the thoughts still lingered.
I got to my appointment and went to go get labs done. I am a terrible poke and today was no exception. After 4 failed pokes we finally got a vein to give us enough blood for 2 vials and I was on my way, just a bit bandaged and bruised. In the hallway I ran into my surgical oncologist (I am no longer seeing him since being off the trial and not having any surgery related things) and he gave me a giant hug and said how incredible my scans were. I hadn't gotten the official report at this time so I was so happy to hear and he just said they looked great.
Once my general oncologist came in he was beaming with content and said that my scans should go up in a hall of fame for "most improved" and a sort of show and tell. They pulled them up and it was pretty great to see. We did a side by side comparison of the scans from 12/22/15 and yesterdays 2/23/16 and it is really and truly amazing.

Left side of screen: 12/22/15
Right side of screen: 2/23/16
We are looking at the GIANT tumor (left pic neck) and then the small remnants that remain (right pic neck)

For once in the past year I was receiving good and improving results from my scans. There is no new disease and just remnants of tumor in comparison to the previous scans. Brain, lungs, all other organs clear. It was crazy to look at the size of the tumors in the scan and how large they truly got, and how small they are now in comparison. 

We (obviously) are staying on this course of treatment and will reevaluate in one month. There is still chance of adverse side effects as there is with all drugs, and for now we will just keep up with the tumor shrinking hopefully. I know this isn't an end game as far as treatment, but for now it is nice to have the positive scan results and head into the next month of this treatment. I don't have another doctor appointment for a month and I am feeling good and actually feel good enough to start making some plans for things in my life, something I haven't been able to readily do for literally over a year. One step at a time! 

Yay for a good scan day! 

Scans and Big Appointments

I had my MRI and CT Scans last night (8pm what?) and this morning and also my appointments with my entire team.

The good news is that besides my neck, the cancer has not spread. The bad news is that in my neck there are now 7 tumors, all growing. 7 f’rs. No wonder I have had so much pain lately, there isn’t any room for them all!!

I officially withdrew from the clinical trial and had to verbally state “I refuse drug today and going forward, I withdraw from the study.” Kinda strange but I get it. Then all my appointments started. I was happy to have my mom and best friend Ashley there for the appointments, definitely helped break up the day and make time go faster.  The doctors talked about the next steps and drug options. I came into the appointment dead set on starting Keytruda and hoping to start the following week. They then presented another drug option which actually is 10% more effective than Keytruda. It is a combination of Nivolumab and Ipilimumab given for 4 treatments (every 3 weeks) and then just the Nivolumab after that for 2+ treatments. This works the same as Keytruda alone, but with an added kick. It is also harder on your system – but also harder on the cancer. There is also a third option after the combo or Keytruda, which is a BRaf inhibitor since I am BRaf positive (a gene mutation in my tumors). Although this has proven to be effective, it is only effective for 2ish years and then the cancer returns. It is more like a Band-Aid in my mind.

I have decided to go for the combo – and we are pretty sure the insurance will deny the drug so we are going to petition for free drug if that is the case.  I should know in the next day or so (but Christmas kinda messes up the timeline) but I will have to see!

For now I have to do a biopsy for new drug and to end the study. I hate them with a passion!! Hopefully it is the last one I have to do. And that I start treatment next week!

Gotta start killing off these f’rs in my neck!!

****Update****

Well that was quick, they denied the combo drug within minutes. The reasoning is cost and that I have already received one round of Ipilimumab and it isn’t usually given more than once. We have now sent in an appeal and a petition for free drug.  Hopefully we hear back soon on their answer.

Scan results, again.

I had another round of CT scans this last week because the study I am on needed them approximately 9 weeks after finishing the infusions of Ipilimumab. I am glad they did more scans because it gives us a better idea of where I stand now instead of waiting another 6+ weeks.
Before they told me the results I started looking into other treatments available for my stage. My cancer buddy Mandy was just recently pulled off of this study as it wasn't working for her and her cancer began to grow more than they felt comfortable with. She is now going to be starting with Keytruda - a PD1 inhibitor drug. So I started looking into it and it is definitely an option. My thoughts going into the appointment is that if things hadn't started to improve I would tell them to continue one or two more injections and then possibly switch to a PDI drug, like Keytruda.
My new scans showed that the tumors are all still growing, and there is a possible new tumor in my neck as well. It has not spread to any other area of my body, which is good. My lungs are the same as they were before, no change in either direction. My tumors, although bigger, looked more cystic (full of fluid not all tumor mass) as well as had more marbling of decrepit tissue or dying tissue. Both those things are a good sign.  All that said, my doctors have the same idea as I had going in. They would like to give the Ipilimumab another month or so to peak (peak efficiency is 4 months after infusion and I am only 9 weeks out from it) and then if at my next scans on 12/22/15 still show growth of the tumors then we will withdraw from the study and switch to a PD1 drug, most likely Keytruda. If the tumors are the same size then we will continue on the study, one treatment/injection at a time.
It is nice to be on the same page as my doctors and is also nice to have some good news mixed into things, just wish the tumors were shrinking.
I had the injection and it was a bit tender, but not bad. I had a pretty easy night with side effects, no fever or chills just a slight headache which is just fine with me. I'm pretty tired today, even after getting a good 11+ hours of sleep last night. Just means my body is fighting hard. I'm hoping this is the case going forward with injections, especially the next one since I booked a trip the next day to New York City. I had a flight credit I had to use by December 15, 2015 so I decided to go visit cousins and see the city all decked out for Christmas. It should be a great time! I really hope I feel good enough to do everything I want to for that trip. We shall see!

For now I am just going to keep on trucking along and enjoy as much of my life as I can while I am feeling as good as I am. This treatment will take me until at least the end of this year, so we will just see where it takes us!

Margins. Large one is 8cm

Spit and urine.. the usual

My hair is getting long.. and curly!

Scan Results

Yesterday was my long scan and appointment day.
I started the day at 7:30 getting labs and an IV placed and picking up my contrast for my CT scan. I sat at the U of U Hospital Starbucks with a friend drinking my contrast, which is the nastiest thing and makes me super sick. No fun. I then got my CT and headed up to Huntsman for the rest of my appointments.
My dad came with me this time to meet my doctors and experience what I have to do each time I am there. I could tell he was a bit anxious by the way he was acting - being goofy and all over the place. But then it was a lot of waiting so that fizzled out. I usually have to wait between and hour to two hours to be seen as they tend to run behind. Although this isn't great, I know that once they are in the room with me they will spend as much time as needed with me which is great. Regardless, it took extra long this time.
When they came in they told me the results from my scans. My tumor is not smaller, but it isn't bigger either. It is the same. There are also some small nodules in my lungs that they aren't sure exactly what they are. They could be cells reactive to the treatment as Ipi has a large impact on the lungs or if they are melanoma. There isn't a way to find out without a biopsy, and they aren't large enough to biopsy. The largest one is 2.5mm and they don't usually worry about things until they are 10mm/1cm. So they just pointed them out for us to keep an eye on (and to stress me out). They also noted that there was some discoloration/marbling inside the tumor which could indicate the tumor responding and that the discoloration could be deceased tissue. Again, no way to really know for sure as this is all still such a new treatment.
I then had to decide whether to stay on this same treatment or switch to a PDI treatment or a pill to counteract my BRAF gene mutation (I apparently have a gene mutation in the tumor?). I decided to stay on the injection trial and we will just continue to watch it all closely. The doctor said he would pull me off if it grows much more and we will switch treatments then. Hopefully I will get over this plateau and things will start progressing faster.
I then had to get a biopsy (to compare the tissue now to when we started) and then got an injection.
I have been having pretty intense headaches so they scheduled an MRI later in the day just to be sure. I got those results today and the brain is clear which is great.
My dad and I left around 1:30 to get lunch. I was glad he got to experience the day up there - even though I know it was overwhelming.
I returned at 4 for my MRI and finally was done with my day at 6. I was spent! I was excited to sleep in today.

Although it wasn't good news, it also wasn't bad news. Just ok news. It is frustrating but I have to remind myself that things could be so so much worse. I am still in this fight and happy to not be getting worse. This battle will be long, I just have to take it step by step, day by day.

Lots of bloodwork... 

The nastiest thing.. 

My dad being a dork and making them take his blood pressure... 

Tumor before injections 

Tumor outlines and the biopsy/injection marker 

After injections/biopsy... 

After...