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!

LaterBlog: August 12-19

I have been filling my time up with as much fun stuff as I can lately. This means I have been extra busy and don't have time to update the blog when I'm out playing! *my android phone would let me update through the app, but not Iphone...

On the 12th I got to watch my sister walk in graduation from her executive masters program at BYU. She has worked so so hard the last two years to achieve this and I couldn't be more proud. It was fun to watch my uncle hand her the diploma as he is an alumni as well as a faculty member of BYU. It was just a good moment. We went to dinner as a family (extended) after which had its ups and downs but overall good. My cousin was in town from New York so it was great to see him.

On the 13th I went to a local craft/DIY festival with a friend. There were lots of fun booths and such and I came away with a sweet treat and two pairs of earrings. It is always fun to just wander through these things. I topped the day off with boating with friends up at Jordanelle reservoir. It was so great to just check out from things for a couple hours. Goofing off, snacking and just hanging. It was a good reset for sure surrounded by good people and pretty scenery.

 


The next few days were full of fun breakfast, lunch and dinner dates throughout the days. I tend to do a lot of that - and I'm not complaining! It is my favorite thing to do with friends, and my steroids approve haha.

On the 18th my dad, sister and two friends went to a Bees baseball game. We got peanuts, beers (not me sadly) hot dogs and ice cream. All the things! It was a fun time to hang with my dad and see him enjoy himself and having us there with him. Earlier in the day I went with my friend as she got a tattoo - for some reason I love to watch other people get tattoo'd but it isn't for me.

The 19th was Mandys (my melanoma soul sister) birthday. This is also the day that her and I met the previous year, technically. We met through Instagram so we met virtually but I saw her and she saw me in the waiting room of the infusion room so it counts. I went back and looked at our first conversations so that was a little hard. Sure do miss that spunky thing.

Looking back at this week I was a busy girl! I am so grateful that my treatments don't make me sick to the point that I can't enjoy things. The hardest part is the steroid shakes and such but that is all workable. Things could be so much worse, and I am thankful they aren't bad.

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!

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

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

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.

Immunotherapy is getting some good facetime!

I got a message from a friend today that NPR was doing a segment on immunotherapy and said I should listen in as it is highly focused on Melanoma. It describes in a good detail what exactly immunotherapy is and what it does when administered.
Immunotherapy has been a part of my treatment since the beginning. My biochemo was 3 chemo drugs and 2 immunotherapy drugs. My clinical trial had one part immunotherapy and one part injections. The treatment I am on now is not technically an immunotherapy but does act very much like one. My next treatment is two immunotherapy drugs combined.

Also, the April 4th issue of Time Magazine cover story was focused on immunotherapy as well and was a good read into how specific the treatment is, as well as how hard it is to get access to and fund these very expensive treatments. Let me remind you that my treatment cost last year was over $750K charged to my insurance (man do I really love my insurance company!!!)

I have attached links to each of these reports - worth a read!

Cancer Immunotherapy Article in Time

Immunotherapy - This is one that only Time subscribers can read sadly.. but worth sharing if you are a subsriber.

The Diane Rehm Show and look for the The New Promise of Immunotherapy Cancer Drugs (April 21, 2016) episode. Or follow this link: http://tunein.com/embed/player/t105523715/

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…

Possibly last injection...

Today was treatment day. Heading into it I had a feeling that the tumors, all of them, were all bigger and was right. I definitely have a third tumor and possibly a forth in my neck. The large tumor is 8.5cm x 7cm and the smallest is 3cm x 3cm. I can't remember the middle ones measurements - kind of like middle children get forgotten.
Once we measured them we talked about thoughts on what is most likely going to happen at my next appointment after scans in three weeks. Most likely we will switch treatments to a PD-1 inhibitor drug. Most likely it is Keytruda, but that will be something decided at the next appointment with my medical oncologist. They said that if it does start to grow fast before the next appointment to call as we will possibly scan sooner than the three weeks. I wouldn't be able to start the new treatment for another 4 weeks regardless. This is because the clinical trial I am on needs biopsies done 4 weeks after final injection and I can't be on any new/other drugs.
I had a feeling going into the appointment this is what the outcome would be and I also knew there were more tumors as I could feel them so I wasn't surprised or shocked. It is just what it is. I feel comfortable with moving away from the clinical trial. It has helped to make things stay localized and not spread, but we need it to do more. So we shall see if that was my last injection or not. It was a tender one if it was!

I have been up at Huntsman a bunch lately because my dear melanoma friend Mandy has been admitted for the past 6 days. She was having terrible and sharp pains in her back and lungs and her leg (she has lymphoma due to groin lymph nodes having melanoma and are enlarged) continued to be painful and bothersome. After being there for two days they realized an infection was starting and forming an abcess deep in her thigh. They drained that and turns out it was staph. She had a fever for two days straight and it finally broke last night. She will have to stay in the hospital until she finishes the IV antibiotics needed for the infection and until they can control her pain (which isn't really happening sadly) I'm happy I have been able to be there for her as I know what it is like to be in there for multiple days. It is hard to be alone up there, you start to get into your head and then it takes over. You begin to wonder how you got there and how this is your life. How am I really a cancer patient? How am I this sick?! It is a vicious cycle so I was happy to help break it up and brighten her spirits when I could. It was also good to just hang out with her cause we don't do that much since she doesn't feel good most of the time. She started Keytruda a week ago, so we will be on the same treatment again if I begin that.

On better news, I leave for my cross country trip tomorrow! First stop NYC! I had a flight credit (thank you back surgery) that needed to be used by 12/15/15 so I seized the moment and am going to be on my way! I will be there 3ish days and then head to California to see my best friend and her cute family for another 3ish days. It is definitely a weird trip to back for, going to cold and the beach on the same trip! I plan to do all sorts of touristy things when I get to NYC and really hoping I feel ok after todays treatment. Even if I feel semicrappy it will be fun to see the city all decked out for Christmas. In California I will be able to see my Goddaughters first dance recital! How amazing is that? I can't wait.

Here's to one day at time, for now and always.

xoxox

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...

Reality is rough!

So I am definitely back to work. I am working roughly 20ish hours a week driving and running around for my good friends and their multiple companies. Although I'm not doing much physical things (thanks to my old lady back.. that's a whole other post...) I still get wiped out after running around for a few hours. I am happy to be back though as it is nice having purpose in my day. From this treatment the fatigue has been pretty bad. Not nearly as bad as chemo, as I don't think many things can compare to that craziness, but it is still pretty crazy how tired I get. I have also been nauseous every morning since my last treatment. I have only thrown up once, but the nausea is pretty consistent. I would compare how I feel to being pregnant.
I have also been getting out more and spending more time at the weekend market with friends. Slowly working up the stamina to start back working the markets. I am not sure that will happen by the end of the season but I will keep trying.
I started dogsitting again about two months ago and have been doing that a lot more. I have a pretty packed schedule for the rest of the year. It is nice to have a change of scenery plus make a few bucks. One day I will have a real job, but for now the random side jobs add up enough.
I go in for my last infusion and injections on Wednesday. I am a bit nervous because I feel like my tumors have began growing again. It looks much larger than it has so I am hoping it is either the same size or smaller but I'm not thinking it is. After this treatment I have my scans at the end of the month and we will evaluate whether to continue on this treatment (up to an additional 13 injections) or switch to a new treatment, probably PD1. We shall see... I am hoping for the injections to work and not switch treatments. Here's hoping...
I have some fun things coming up though, I go to Seattle in 10 days and then go to Mexico for my birthday in November. I am looking forward to both! I am hoping that for Seattle I don't feel too sick as it will only be 8 days after treatment. If I feel like I have this last round I will be just fine and be able to enjoy myself. It should be fun!

On to my next treatment, can't believe I am already through almost all of it! What a year it has been. I am grateful my body has tolerated all this as well as it has. Craziness I tell ya! Here are some pictures from the week...

Tumor

Sunrise - hadn't seen one of these for a while!

Go Utes!

Hanging at the golf course with Brookie

#shorthairdontcare

Another Clinical Trial

I have decided to participate in another clinical trial. This trial is looking very promising and is far less invasive than biochemo was. This trial is injections into the tumor of HF10 (a modified herpes virus) as well as infusions of Ipilimumab. The first month I will have 4 HF10 Injections and 1 infusion of Ipi. Then it will go to one of each per month. If the tumor doesn't shrink within the first month I can come off of the study and switch to PD1 treatment. It is nice to have options. The side effects are flu like symptoms and some bowel issues, all things I can handle. I hope to be able to start working again if things aren't too hard on me.

I had a rough day yesterday. I went to breakfast and then to the farmers market. At the farmers market it was 102 degrees and it hit me like a bag of bricks. I felt nauseous, weak and began shaking badly. It was awful. I sat down and my friends got me wet rags and Gatorade to help. My friend had to drive up back to her place where I sat and recouped for a couple hours. It's things like that that remind me that chemo is still in my body and I'm not back to normal even though I feel much better than I have the past couple weeks. Just got to still give it the time it needs to heal.