Port Access

A lot of people ask how my port works so I decided to film it getting accessed and a blood draw. It doesn't hurt and is extremely simple and helpful. For anyone considering getting one, do it! Definitely one of the best decisions of my cancer fight that is for sure!

Link to YouTube video

New Plan... For the 6th time

Today was the day to decide what we are doing next. It was my appointment with my general oncologist. Since I hit toxicity and formed auto-immune hepatitis from the Nivolumab/Ipilimumab combo I am not allowed to proceed because the risk of liver failure is basically 100%. And if that happens then I am not a candidate for a transplant because of having cancer. Obviously this is worst case scenario but we aren't going to risk anything.

There is a couple options available still, one being a new clinical trial. It combines an injection into the lesions/tumors and also has infusions of Keytruda. I do not remember the official name of the injection but it is IL12, and very potent and it sounds crazy. The injections are supposed to be extremely painful and invasive. The tumors would double or triple in size before going down. With all that said it is showing to be very promising in the long run, but things would get worse before they got better.

My doctor basically said he has put me through the 2 hardest treatments and this would be number 3.
I was gearing myself up to sign on to this intense and invasive treatment and then we realized I am not eligible due to my high steroid regimen I'm on. I would have to be off of it completely before starting and that wont be for at least 6 weeks. And at that point we will look at it all again.

That brought us to figure out what we can do. Basically we need to get a handle on the tumors and get the pain down. This can be done through radiation or going back on the BRaf inhibitors. Because of my steroid regimen I am not eligible for any new treatment but can revisit old ones. We decided against radiation (thankfully!!) Because it has the potential to take options off the table later down the road. That left us with the BRaf inhibitors. We know I respond quickly to these and hopefully it will shrink the tumors so I can have some pain relief. We will stay on these until I hit the plateau again (it is inevitable that I will, almost all patients on this hit a plateau within a year). Although I don't like to see my options shrink, I am ok with this plan. I know that I tolerate the inhibitors well and feel pretty normal on them so that makes me happy to know that I can enjoy summer and won't be too sick. My Sun sensitivity will increase again but I have hats and all the sunscreen anyone could need!

So new treatment plan but not new treatment... Treatment 5 part 2?

I should be able to start the meds the beginning of next week. I will also have new scans to restage me and make sure we are still just dealing with tumors in my neck. Let's hope they have still stayed localized.

I'm excited for the holiday weekend and fireworks and hot dogs and friends. Now if I could have an adult beverage that would be even better... Damn liver!

Hotel Huntsman, 2 night stay

Wednesday, I went in for my scheduled treatment and went in to get all my labs done before they give you the go ahead to head to infusion. I felt great heading in, just intense nerve pain in my neck. Otherwise just a bit tired. For some reason my port wouldn't give us blood but would flush. I guess this just means the fibers built up like a clot but only blocked one way. This made it so my numbers weren't ready once my doctors appointment started. We talked about things and how the past 3 weeks have been and going forward and then the numbers finally came out. Once they checked my numbers it was obvious something wasn't right and it definitely wasn't right. Turns out my liver was in toxicity. The high/normal that the liver enzymes should be is 40 and 60, mine were 1206 and 1214 (respectively) so I got to be admitted to hotel Huntsman for observation and to get an intense steroid regimen in place and started. They also discontinued all of the meds that had the potential for raising the liver enzymes and one of those is my nerve pain meds. Lets just say I was not happy and the pain started to rise instantly. They did their best to control it but it was finally decided (with a lot of input from me and a doctor friend) that I could have it back. Just missing a day and a half of it really put me behind and I am still catching up. After the first night my numbers began to trend in the right direction, ~700 and ~1100. They needed to keep me to make sure they were continuing to trend down - Which they did and I was home Friday afternoon. Like I said I didn't have any real symptoms or pain from my liver, just from my neck. 

Because I reached toxicity (considered auto-immune hepatitis) I am no longer allowed to continue on this treatment. I said a bad word and my doctor said to not get upset just yet. His explanation was that he just returned from a major oncology conference where the 5 year data points have been released for this treatment. Following people who dropped out for toxicity, etc vs. people who completed the full treatment regimen, it showed the people who reached toxicity lived an extra 10%. Also we are most likely adding radiation to the mix which will accelerate the response in my neck while the drugs are still in my system. There are still options, we will just have to figure out the best one and where to go from here. Not the end of the line. 

I have appointments this week to go over all the next steps and I'll keep you posted on those. For now I am just getting the nerves to calm the crap down and getting used to a very high dose of steroids - hopefully not for long!

Day one - not how I wanted to spend my days!

I was able to leave my room a lot and actually enjoy the view from the floor

New lucky charm

Home was a good goal for the stay!

Father's day

Father's day was a good day, mostly.
I started the day out with a quick stop to the Wheeler Farm Farmers Market and had some breakfast. I then ran some errands and did some shopping. After that I went back to where I was dogsitting and played with the pup a bunch (sweet great dane) and then took an amazing and long nap.
After I woke up I got ready and headed to my parents house and we grilled steaks and had corn on the cob, beans and potato salad. All was super tasty and followed up with strawberry shortcake. I gave my dad some framed pictures of me and my sister and then one of my mom, sister and I. He loved them and was genuinely happy and enjoyed his day which made me enjoy it too!

Now the "mostly" part.. So that long amazing nap I took made me sleep through the normal time I take my neck nerve pain meds. I take them 3 times a day and can tell when I need them but was dead asleep so I missed it. I took them as soon as I woke up but knew I'd pay for the 2 hours of lapse. About half way through dinner the pain got pretty intense and obvious to everyone. We tried some anti-inflammatory gel but I feel like it made it a little worse. It got to the point that I finished dessert and headed out so I could lay down and try and figure out something to help. Nothing helped besides time, laying down (kinda) and my next dose.
It is insane to me the pain I've been having in my neck. My tumors are a fraction of the size they were at the worst and are causing almost as much pain. So so crazy. Hoping to begin to manage it better. appointment on Wednesday.

But like I said father's day was a good day, mostly.

Things are pretty good

I am happy to report that since treatment a week ago I have had little to no side effects - pretty crazy and a complete difference from round one. The worst thing happening is that my neck is extremely sensitive and sore. The tumors are larger, red and warm. It is almost like they are aggravated. They are pushing on tons of nerves so I get lightning bolts of pain when you least expect it. It is very unpleasant and painful so I have started back on my nerve medication which is starting to help out a good amount.

I was so excited that I felt so good so soon after treatment because the Sunday after was two of my most favorite events - Gay Pride and the opening day of the Wheeler Farm Farmers Market. I rested everyday up until Sunday so I would have the energy to go to both. It was a full day! I had a great time though and was worth how tired I was at night. Since then I have been pretty active and even worked two days this week. Doesn't sound like much but it truly is. Hoping it continues.

One thing lately is that I am in a sort of mental funk. My mind just wonders to the dark side of things and then I have to reel it back in and to the moment. It is part of having cancer - your mind wanders and goes down the list of "what if," and it is terrible. I am working on getting out of the funk and not stay in it, it will just take time.

In the middle of all the fun my dad had back surgery. He had 4 discs repaired since they had herniated. His surgery went really well and he was discharged practically immediately. Hoping his recovery goes smoothly and no re-injury happens. No bending, twisting, lifting. Getting in and out of bed log-roll style. It's a lot. Backs are tricky... I know too well!

An update on little Ruby who is 3 and fighting stage 4 melanoma and on Nivolamab (one of the drugs I am on) - she had her scans this week. Her little body has 40 tumors and sadly they are growing, which means the treatment is not working and so they have to look at other options, which there is slim to none of. There are some clinical trials they can apply for but that is a process and may not happen in time. It truly makes my heart sink, and makes me think the worst for myself as well (I'm really trying not to go there) Her fundraiser is this weekend and I have been helping get silent auction items and was impressed that I got 30+ donations! I truly have amazing people around me and an amazing farmers market family. The rally will be amazing! If you want to donate you can go to facebook.com/rallyruby to donate to the rally or their gofundme - https://www.gofundme.com/RallyRuby - anything will help! I'm so excited to go support this sweet girl and her amazing family. Really hoping we both can beat this beast melanoma!

As always, thank you for all the love and kindness you've shown to me - especially those sweet people who have sent me letters! I was so amazed that almost half have been from people I don't know but just follow my journey. Truly incredible. Thank you. Thank you. Thank you.

Almost all the donations, amazing. 

My Pride buddy for almost a decade!

Big Chair Photo - a tradition! 

Dallin and Davis

The Parade

Treatment Day 2

Day two of the combo treatment is done and in the books. It is now two days after and I still am feeling good. I am pretty tired and have constant nausea but not as bad as with the first treatment. I am laying low and resting mostly, to give my body the best chance of not freaking out. I do not want a repeat of last time! My goal is to be able to go to the opening day of the farmers market this Sunday as well as attend some of the Utah Pride Festival - as per tradition. It will be a full day but both of those things have great importance to me and I will be sad to miss out. Again, hoping my body cooperates.

I also had a formal ultrasound done of my gallbladder - named Gally fyi - and it was confirmed that I do have numerous stones. There is no infection or thickening so there isn't an immediate need to remove it. We (my oncologist team and I) have decided to not do anything with it until it spazzes out again - which hopefully isn't anytime soon. For now Gally is here to stay.

This week I attended a funeral for John Williams, the owner of the company I work for, Market Street. I worked for him for over 7 years and worked 7 of his legendary Christmas parties. He was one incredible, generous and fun man. The funeral was very positive and it was great to hear all of his accomplishments and to hear that he spoiled his family so so much. Pretty amazing to see. Makes you want to give all you've got to those you love.

I want to thank those that have sent and dropped off letters - you truly amaze me! I have received a good amount and it makes me feel so so loved! Thank you, thank you, THANK YOU!

Now keep positive thoughts that I continue to feel good going forward towards the next treatment!

xoxoxo

Friday Update

I have been feeling slightly better each day, but definitely am still a whole lot of tired. I am doing really good at 3 hour naps and then feeling like I want to go to bed again at 6 or 7pm. I have to force myself to stay up until at least 9, that I can feel ok with.

I had a follow up appointment yesterday for a skin check and the clinical trials I was involved with early last year. I learned that one of the studies is going to compensate for each visit, approximately $45. I'll take it! All my skin checked out good, no new worry spots or things to biopsy which is always great. I also talked to both my oncologists about my damn gallbladder and we decided to do a formal ultrasound before treatment on Wednesday and see what is happening and how many stones are there (as well as how big they are) before deciding on surgery. I have been told I can have it out whenever I feel strong enough for the surgery. That is a tough one because this treatment has decided to kick my ass so I am not sure how I feel about putting a surgery on top of it. Or if it will just be good to get it over with and feel super crappy all at once? Why are these the decisions I have to make? I would much rather make the decisions of what kind of frosting to put on a cake I made or what to drink. Ya know, simple decisions.

It is a holiday weekend and I have very little plans, but the plans I have are great with me because it will just be stuff to keep my mind busy before heading into treatment again mid week. When you know it will make you sick it is hard to get geared up to go in... mind games I tell ya. I am more prepared now and know what to expect so I wont let it sneak up on me like this last one. I have my Gatorade and Ensure stocked up as well as a cozy bed!

Thank you to all who have written letters, we're up to 9 now. So nice of you to take the time out of your day to send me a little note. I haven't read them all but I am excited to see who some are from. Like I said, I am going to reach for them when I am having a crappy day or just need a little extra something something from my army.

Good vibes for the weekend and treatment next week!

Just another ER visit

Yesterday was spent at the ER, again.
I have been having a sharp pain in my upper abdomen that just kept getting more and more intense. After I started looking into why it would be hurting where it was, I realized it had to be my gallbladder. It got so bad that I decided to go in.

I had to go to the U of U ER since Huntsman doesn't have any options for evening and weekend urgent care. I was there forever... They did an ultrasound of my gallbladder and found multiple stones and one giant one. It had a freaking shadow on the ultrasound! Then the problem was to decided if it was infected or blocked. Luckily it wasn't either of them, but that also means that I couldn't have it removed while I was there cause it isn't deemed an "emergency." I was sent home (and finally was able to eat and drink a little something) and will talk with my oncologist and get a plan. I will definitely need it removed so I hope to have it sooner rather than later as the pain is pretty consistent and not comfortable in the slightest.

It has been a month that's all I have to say.

Sexy lady!

oh and they couldn't access my port so after 6 pokes they got an IV started... 

Shiz got real, real fast.

The last few days, well week has been a lot harder than I expected. Starting Friday night things just started to keep going downhill. I basically just slept the days and nights away, dealing with the constant fevers and trying my best to stay hydrated and eat whatever I could find that even sounded good. Then Tuesday morning came and I knew I had passed the point of feeling better and that dehydration had definitely kicked in. I was shaky and disoriented, nauseaous. When I left the bed to attempt to get up for the day I would only be summoned back to either sitting or laying again. I contacted my doctors/nurse staff and told them my concerns and they got me into the Acute Care Clinic (ACC) shortly after that. Once there they did some tests to decide if I was dehydrated and I could barely stand during them, my heart rate was in the 140's and my blood pressure was all over the place. Not to mention the steady fever of 100. Doctors there wanted to rule out infection as well. We started fluids and then pulled labs for the infection testing. After my second bag of fluids, they said they may admit me because my oncologist feared I was having a really rare heart side effect which is an inflammation of the heart as a muscle. Luckily, after the tests came back normal, they let me go home; 6 hours, 10 labs/test and 3 liters of fluids later. I felt better but definitely wasn't great. My friend helped me get home and then I headed to bed - still no appetite.
Everyday since I have gotten a bit better and a little stronger. I was able to run to the store - doesn't seem like a big deal but man it wiped me out! I stocked up on Gatorade, Ensure, Coca Cola and Sprite; all things you need when you're really sick and need fluids or nutrients. So much for the no soda thing I was working on... It just tastes to dang good when you don't feel good.

My sweet friends brought me a tasty dinner last night as well as some beautiful flowers. Their company was plenty, but the flowers and food didn't hurt either.

I am planning on laying low the rest of today and then hoping to venture out and do something social tomorrow. I am helping gather donations for Rally for Ruby on June 11th and a lot of the vendors will be doing Farm Fest tomorrow so I want to grab what I can. I truly have an incredible farmers market family - always stepping up to the plate for me. 

Here's hoping each day gets a bit better and that I can get stronger to head into the second dose of treatment. Keep the positive thoughts coming!

oxoxo

A request from me to you

The most common thing I get asked during all this cancer BS is "what can I do for you?" Or "is there anything you need?" Most of the time my answer is no because I'm a bit stubborn and I am also a bit spoiled and people have already shown up with whatever I would request if I did. But this is a bit different. I am asking you - family, friends, acquaintances and even blog followers I've never met - to do something for me. This next chapter in this fight is not going to be easy and the past week has proved that to be very true. I would like you to write me a letter of your hopes for me and this current treatment as well as my life going forward. I won't open them right away but when I'm feeling crappy or struggling I will pull one out and get a little pep in my step hopefully. Is this a bit cheesey? Yes, but it is what I need from you to help keep my head up and stay positive when my body feels like a truck hit it!

Please mail or drop them off to my dear friend Elisas bakery,

The Baking Hive
3362 S 2300 E
Salt Lake City, Utah 84109

Pick up a Dirty Johnny or some Minty Mandy cake while you're there too... 

Can't wait to hear from all of you!

Xoxoxo
Alexis

Fever city

It's been three days since treatment and I've had a rough go. I've basically been sleeping mostly and dealing with practically constant fevers, ranging from 99°-104° (I almost went in when it hit that high but it went down as fast as it went up) I also have sweat more than I have in ages just from the fevers rising and breaking - makes for some good curls though.
Today I've had a bit more energy in the last half of the day so I'm hoping that I just continue to feel better as each day goes by. Being knocked down so quickly does a number on me mentally and definitely reminds me that I'm sick. It also doesn't help that I can feel and see my tumors growing. Yep, from being off meds for 11 days they have grown and in the last two days they have definitely grown and are tender. This could be all my TCells attacking the cancer cells like they are supposed to but we won't know until scans in July. Here's hoping!
Definitely going forward one day at a time.

Damn tumors... Hoping it is a good sign and not sure growing out of control

Port O Cath and Day One of New Treatment

I am writing from my infusion room. Today is day one of my new treatment. I also got my port placed on Tuesday. Lets just say that was a terrible no good rotten day. Followed by another rotten day. For the port placement they give you "moderate" or "conscious" sedation. Long story short and to spare you the details, my body doesn't respond to the drugs they give you for this so I was much more conscious then anyone should ever be for such a procedure. It was awful. And then yesterday I was so sore from being so tense during the procedure, every muscle in my upper body was sore. I slept well finally last night and woke up feeling much better.

Before coming up to treatment I met my sweet friends Ali and Cynthia (and Elisa) at The Baking Hive. Ali's daughter is Ruby who I have written about before. She has stage 4 melanoma so I feel extra connected with her. I just hate knowing that she has to go through the same thing as me in her little 3 year old body. If you didn't know she was sick then you'd have no idea, she is still just a sweet little girl - carefree and happy. Her and her sister Jane decorated cupcakes and then Cynthias boys joined them and decorated their own. It was pretty dang cute to watch. 

My port was accessed for the first time today. They weren't able to put numbing cream on it or ice it before so I was a bit worried about how it would feel being used for the first time. I literally barely felt the needle go in - well worth the two days of pain for the ease of accessing it. 

Right now I am waiting for the pharmacy to mix up my first drug, Ipilimumab/Yervoy and then we will get started. After I'm done with that (90minutes) I will get my Nivolumab/Opdivo and I believe that is a 60minute infusion. I have planned on being here until 6ish so we'll see how close to that it actually is. 

Here's hoping I don't get sick from these treatments and everything goes well going forward and that I respond well. Positive thoughts out there for me please! 

xoxox

Infusion started

All hooked up

Getting accessed for the first time - a breeze!

Warning: Hazardous (but also freeeeee)

The plan

We have the plan for the next few months. I will be getting my port placed on Tuesday May 10th. This is an outpatient procedure done under conscious sedation - what they do for colonoscopies and such. I have had this before and I am definitely not conscious which is great! A few people have asked if I had a port before and I have not. Ports weren't usually given to Melanoma patients until recently. Before just recently most treatments were not long term infusion based so it wasn't needed. Since this treatment plan (and the next option if I don't respond to this one) is a long infusion based treatment it is a smart idea. Although I'm not looking forward to the surgery I know it will be good in the long run. This can stay in for as long as I need it - years even. 

I start my treatments on Thursday May 12th. The first 4 treatments will be the combo of Ipilimumab (Yervoy) and Nivolumab (Opdivo). Treatments 5-however many will just be Nivolumab. The first 4 treatments will take approximately 6 hours in the infusion room. After that it will be around 3 1/2 hours. 

I am hoping I respond well to the treatments and don't have many side effects. I am going to try and carry on with life the best and most normal as I can. I have been working a bit but all of the things I have to do I can do from home at my own pace which is great. 

For now I am enjoying my last weekend before the next steps! 

Onward ho!  

The Call

Today as I was running around I got a call from a number I didn't know. I only answer these calls when I don't have anything else going on - otherwise I let them go to voicemail. Who was on the other line is what I imagined to be a sassy southern woman from her accent. Here is the call (as best as I can remember that is)

Me: Hello?
Caller: Yes, is this Miss Alexis Waters?
Me: This is she.
Caller: (in the most monotone script reading southern accent) Hello, this is --- from Bristol-Myers Squibb patient assistance program. I am calling to inform you that we have approved your grant for the Yervoy/Opdivo combination and I will be sending the drug to your doctors office shortly.
Me: Wait, what? That is amazing! Wait, what drugs again? (because I was making sure she said both! I was only expecting one!)
Caller: (again, in the most monotone script voice, she read the script again) You've been approved for Yervoy/Opdivo combination.
Me: Oh my gosh!! That is incredible!! Thank you so so much! Amazing!
Caller: (sooo soo monotone script) You have a nice day.
Me: Thank you! You too!!

And that was that! I am pretty sure she has NO IDEA what kind of drugs she is handing out. Life saving, life changing drugs! She was ready to just get off the phone and on to the next call. Gotta love a scripted phone bank worker!

I have been granted the FREE yes FREE drug! Amazing! Earlier in the day my nurses called and we have my port scheduled for Tuesday and then my first treatment will be Thursday. Pretty amazing.

To put it into perspective - just the Yervoy (Ipilimumab) treatment alone is $400K+ that they charge the insurance. I literally was just gifted over a half a million dollars. Freaking incredible!

Thanks for all the positive energy you all put out there for me - it worked!

Live Updates From My full Day of Scans and Appointments

It is currently 4:18am and I am lying in bed, awake. Sadly I woke up from the pain in my face from the swelling around 3:45am and took some Tylenol (I know I probably should take something stronger but oh well) and then have been trying to fall back asleep since. I have been thinking of the day ahead of me, what needs to be done; take jewelry off at home, what I'm wearing today, what time I need to wake up to start drinking the nasty contrast for the CT scans. etc. And then thought I should write a blog throughout the day as I have time. My day starts at 8:30am when I have to start drinking the barium sulfate contrast. I will drink that for an hour and a half leading up to my scans. I have blood draws/IV placement at 9:30. CT scan at 10:15. MRI at 11. Psych follow up at 1pm. Then have a break to get some food in me since I can't eat before drinking the contrast. My sweet friend is meeting me at the hospital to grab food since I have a bit of a break. After that I then have my appointment with my oncologist at 3:30. Here we will get the results from the scans and hopefully get some more answers about what is happening with my swollen and painful face. It is a long, full day.
Many people ask who goes with me to all of this and often offer to join me. I usually go it alone unless I know big things are going to be talked about, then I may invite my family up. Even then I'm reluctant. I have been dealing with all this for so long (7+ years, and then heavily for 15 months) that I just feel it is annoying to bring someone else along for the long waiting game. These are long, drawn out days. My appointments usually take 2+ hours and I feel that is a lot to ask of people to sit around with me. I don't like sitting through it, why would I ask for the busy people in my life to do the same? I also feel like I have to entertain them to a degree and that's not what I'm there for. I know it is silly, because if someone asked me to go with them I would be happy to spend my time waiting with them. Ahh the crazy role reversal.
I'm going to hopefully get some more sleep now and will update this through the long day ahead. Gotta love being able to do all this on my phone! 4:38am and back to sleep I go (or try at least!)

10:24 @ Huntsman
I just finished my CT scan and am waiting for my MRI. They were able to get my IV placed on the first try which is always nice as I am a hard poke. My veins are sick of being bothered. I ran into some of my previous nurses and they agreed that my swelling is most likely inflamed parotid glands, what we do for those I am not sure. They also find it strange that my previous IV/blood draw sites all are flaring up... My body is just not liking things right now.  After the MRI I should be able to grab a snack before my 1pm appointment. Here's hoping!

12:16 @ Huntsman Bistro having a snack
All done with scans/MRI. It's always nice to have them done and out of the way for a while. My body really hates the contrast I have to have for them so that doesn't help either. Not sure how I feel about the scans, not sure if I feel like they are going to show progression or stability. The way I've felt the past 10 days gets my mind wandering to things I don't like but I try my best to not get too ahead of myself. I will say, no matter how many times I come up here I'm always in awe of the view.

3:06 @ Huntsman
Psych follow up all done. Pretty straight forward, went over managing anxiety related to everything and just options available to me as far as resources. Since my panic attack I've only had a few small anxiety moments but am able to recognize them quickly and calm myself down.
My dear friend met me at Starbucks at the U of U hospital and we chatted and had some mid day caffeine. Much needed - both the talking and the caffeine. She's dealt with cancer more than she should as well - losing her father and uncle within months of each other. She's a good person to have around and understands the cancer world and all it's craziness. She and I have become very close these past 15 months and I'm very grateful. Now just waiting to go to my final appointment at 3:30 to get results and answers about my face.

5:32pm @ Huntsman, still (in my car though)
I am finally done with my appointments. My last appointment was with my oncologist. Scans showed that my tumors have stayed the same for the most part since my last scans 8 weeks ago, no bigger but not smaller either. There are no new tumors and my brain is clear too which is great. Since I have basically hit a plateau and side effects are starting to pile up they feel the best thing to do is stop the BRAF inhibitors and switch to the Ipilimumab/Nivolumab combo. I'll go more into this in a separate post. This also means I can stop taking the prednisone which is great!
As far as my face swelling goes, they brought up a head and neck surgeon and he agreed that it is the parotid glands but said they aren't infected which is good. There is a very very slim chance it is mumps, yes crazy I know, but we still needed to do an additional test to make sure (which meant an additional blood draw since they took my IV out after my MRI). Regardless I can start to treat this at home with heat, massage and lemonheads. I can deal with that. I feel pretty good about it all for now but I am guessing I will start to think it all through more in the next few days. Right now I'm going to see a lacrosse game and a baseball game.

9:44pm @ Home
I decided to go see my friends daughter play lacrosse for a minute and then watched my favorite little tike play baseball, if you want to call it that. It was good to just decompress for a little bit. I turned my phone on silent and just enjoyed the simpleness of the night. Grabbed some dinner and now I'm home. I'm attempting to put heat packs on my cheeks but it is proving to be interesting in the least.
Processing the day a bit and will be heading to bed early tonight, as in when I finish this post.

It was a day. Not good, not bad, but a day. Happy to have it done and now have some things to move forward with and decide. Now let's hope the face swelling goes down quick and I can get back to looking like my normal self.

Goodnight.

Timeline sinking in

Today I had my normal monthly appointment to go over how treatment is going and we map out the next months plan, talk about side effects etc. No scans this month, they are in 4 weeks.

Ever since we decided that I would do this treatment, my third choice if you remember, I knew that this isn't the last treatment I would be doing as it isn't a permanent/end game treatment. It is more of stepping stone to get to the next treatments and also a requirement from the insurance companies to do (don't you just love that?) Most patients stop responding to the treatment 6-9months in and again almost all have re-occurrence of cancer growth within two years of finishing the treatment.
I am entering into my 4th month on this type of treatment. I asked today how long I could stay on it and I was surprised when they said that I could technically be on it indefinitely, but again most people see little response rate between months 6-9 and then move on to the next treatment. He then laid out the next steps they are thinking for me and that would be to stay on this until August (7 months in), unless my body decides to not tolerate it sooner, and then switch to the hard hitting Nivolomab/Ipilumimab combo. This combo is not covered by my insurance as of now so I would have to get a grant from the drug companies approved. The petition is already in, but is on hold until we get to that point in treatment (the company requires you to start the drug within a week of granting you drug, so we can't do it until we are ready.)

For some reason, even though I knew this all along, it hit me hard today that I will be in treatment for at least 7 months, but looking more like a year plus. Just thinking of being here again next year and still on treatment is a bit overwhelming to me. Is it because I am not sure if I can make plans for that whole time? That life can't move forward while still on this path? That cancer does have a reign on me, more than I am allow myself to understand? I am not sure. But today just kinda was a blah day when I really wrapped my head around what my life will look like for the next year+.

My plan, and I will have to actively work on thinking and acting in this way, is to have cancer be the best thing that happened to me. Happened, in the past tense because I want to believe that I can truly beat it for good. I hope to actually start working while I feel good, taking it week by week as possible. I want to give myself permission to live as though I am not fighting cancer. Not let it reign me and all that I do. I want cancer to have given me a different look on life and not take things for granted, live in the moment. Not think and worry about what everyone is thinking and judging me on. We'll see how this all goes. Trying to not get too far into my thoughts of the coming year. Thinking in the now, not the months down the road.

Silly life, you sure know how to be complicated at times!

New Treatment News

Well today was a rough one. I had my end of study appointment which concludes my receiving herpes injections into my neck every three weeks. I am happy about that! I am sad to not see my team of doctors and nurses every three weeks, but know I will see them lots while I am still getting treatment. They are like a little side family now that I see them so much!

Today marks one year since my first (and traumatizing) biopsy. A year since I knew something was wrong. I think my body/muscle memory kicked in and made me extra emotional at this appointment. I just am frustrated that I have been dealing with this all for a year+ now and still fighting – and that it is worse! My biopsy on Monday was better, still not fun or good, but they handle things much better here than my first one ever. I don’t even need drugs anymore. I still try and pretend I’m all tough, but regardless I am freaked out and end up crying a bit.

Today in my appointments I got some bad news. Not only has the insurance denied the combo drug, it also has denied the solo drug Keytruda. Their reasoning is that I am BRaf positive and need to complete the BRaf inhibitor treatment before starting anything else. This is the Band-Aid treatment I talked about a few posts back. My doctors and I agree though that I cannot wait for the appeals and claims to be completed to start a treatment and need to be on a treatment regardless of what it is. It is too dangerous to not have me on anything and it has been 4 weeks since my last treatment.  So I am forced to go on the one thing I didn’t want to do.  Although it will work in the short term – it is that long term I am concerned about.

Regardless they put in the prescription and I picked it up from the pharmacy today. I just have two bottles of drug that is supposed to be a cancer killer… So so strange to me. I just think if you are going to kill cancer then you should be a little more aggressive than a couple pills. But maybe they will kick me on my butt… who knows! I have chosen to start them on January 1, 2016. Start the New Year with some sort of new-ness.

The silver lining is that if the drug company does grant me free drug I can come off of this treatment and switch to that. And in the meantime it should shrink my tumors a bit which will help with the constant pain I am in.  I really hope this is the case…

So strange I have cancer drugs in my fridge…

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!

Caught by Surprise

Yesterday was my treatment day and surprisingly it went very fast for a treatment day. My blood draw was quick - first poke which was nice! And then the doctors were on schedule if not ahead. My doctors aren't usually on time which can be frustrating to most people but when you realize they are dealing with some very intense situations and patients. I mean it is a cancer hospital.. When they are in your room you are their #1 priority and they will stay in there as long as needed, until every question is answered and everything is covered. So I have to keep that in mind when it takes 1-3 hours to get seen. It is just part of this crazy journey! But that wasn't the case yesterday, they were early! My drug/injection was released quickly too so after I was measured (my big tumor is bigger by about a centimeter and my small one is smaller by about a half centimeter) and some side effects were discussed we did the injection and I was on my way. We injected from a different angle and I felt it more but it wasn't too bad.
I then left and actually worked an event for a friend for 3 hours and then finally went home to relax. Even though treatment days aren't really that physically hard, it is mentally challenging so it is nice to just have the evening to do nothing. I got some food, watched some tv and headed to bed. .
I have been dealing with some insomnia lately. I could be absolutely exhausted and lay down to sleep and will lay there half asleep for hours. So that was the case last night. I headed to bed around 10:30 and then at 1am was fully awake, shivering. I kept thinking "how am I so cold?" I was under multiple covers and the heat was on.. then it hit me. These are the side effects they had warned me about all along with the injections - chills, fever, body ache. I felt my face and it didn't seem warm so I continued to lay there. After about another 30 minutes I finally decided to take my temperature.. 100.3. Damnit! I also had some strong nausea and ended up throwing up. Double damnit! I am housesitting so I was alone and didn't want to fall asleep and go into a huge fever so I set my phone alarm for every 45 min to keep checking. And the fever kept climbing.  I started googling at what level do you go into the emergency room for a fever. Just so you know, that is 103. As it kept climbing I started to think of who could take me if needed and how annoying it will be to have to explain my entire medical history to the emergency doctor and what they could even do for me. At 4:15am my fever hit 101.9. I set the alarm for 30 minutes and finally at 4:45am my fever broke and was at 99.4. I was then finally able to fall asleep for real and I woke up purely exhausted. I was still nauseous too. I had to go to work for a bit and I made it through that and came back and took a good nap.
I am thankful the fever has not returned today, here's hoping it stays away. I was so caught by surprise by these side effects since I haven't had them at all through all this. They were saying that the farther out from the Ipilumumab the more the injections will have side effects. I am now 6 weeks out so we shall see how the next round does.
The study also added scans to my next appointment. They want them 9 weeks after stopping the Ipi. Scans are on 11/10 and my next appointment is 11/11. It will be interesting to see if anything has changed in the short 6 weeks.

I'm grateful that I haven't had many side effects during this treatment but man last night sucked and caught me by surprise! Now I know what to expect going forward!

Tumor Questions

When people realize that I have a tumor (well two...) in my neck there are usually some questions. I figured I'd answer some of them here as I would assume most people have the same questions/concerns.

What is it growing in/on?
My tumor is now growing/living in the tissue/muscle in my neck. It isn't a lymph node as I had pretty much every one of them removed on that side in February 2015.

When did it start growing/how did you find it?
It started growing/forming in probably April 2015 while I was on biochemo (not a good sign.) I could feel a hard lump by my scar, was told it probably was a scar bridge/scar tissue, but it wasn't until June 2015 that we confirmed it was a tumor and metastatic melanoma through a biopsy and CT scan.

Why don't they just remove it?
There are a couple reasons for this. One is that since it isn't a lymph node or contained it is hard to remove all of it without leaving stray cells behind which would just continue to grow. A surgery would just be a temporary fix and the tumor would return. Another reason is that the treatment I am on it is necessary to have a tumor to inject into. If you remove the tumor you no longer are able to be on this treatment. The goal is to kill the tumor instead of removing it. If at any time I am sick of the tumor I can request they take it out, for now we are going to continue on the treatment trying to kill it for good.

What about radiation?
There are a lot of things to consider when deciding on radiation. One major thing is that melanoma doesn't respond very well to it, making it less effective. Also there are a lot of permanent side effects that are very serious that I didn't want to risk.

Does it hurt? Do the injections hurt?
The short answer is, not really. Because of my surgery to remove the lymph nodes on that side I have nerve damage so the surface (most of if) is numb so I can't feel any pain in that area. I do have some nerve sensations/burning at times and tightness but not so much constant pain. The area is very tight, but luckily it isn't painful. As far as injections go, if they inject into the large tumor I can't feel it really, just a slight pressure as we are adding fluid (approx. 5ml) to it. If they inject the smaller one there is more sensation on the surface so I do feel that one a lot and it isn't fun to say the least. It is an intense burning pain/sensation.

How many more injections do you have to do? 
Right now I have 12 more injections available, given every three weeks. If the tumor is gone before the 12 injections then we will stop them, or if there is any health concern that would validate them pulling me off the study then they will stop them. As of right now I am planning on all 12, or 36 more weeks of treatment.

What are the injections?
The injections are of a virus directly into the tumor. The virus is a modified herpes simplex 1 (the cold sore virus). Since we know that the body responds to herpes we are injecting it directly into the tumor. Your body then sends white cells (a whole ton of them) to the area. Once there the cells realize something else is going on and begin to attack the melanoma cells as well. The melanoma cells then burst and die (that's the hope). It also should act like a vaccine and form a cell memory for melanoma and kill any stray cells through out the body now and in the future.

When the tumor dies, where does it go?
When a tumor dies, your body reabsorbs the cells and does away with them. I don't know how that truly happens, I just know that the body flushes them out on its own. Sweat? Pee? Poo? Who knows...

Will you have herpes then?
There is a chance that I may develop cold sores, but it is not known for sure. As of now I haven't had any problems or cold sores. I am not allowed to share food or drinks while on this treatment just to be sure I don't spread the virus to anyone else.

Can I touch it? 
Yes, definitely. And no it doesn't hurt. People love to feel it and are usually surprised at how hard it is.

Are you sick of talking about this?
Nope. This is pretty much my life right now so it is most of what I have to talk about. I am happy to answer questions people have, it also spreads awareness of melanoma and that it isn't just skin cancer or on the surface - that most of the damage and danger is internal.

Let me know if you have any other questions!!

This is the most recent picture of the tumor...