All things medical

It has been three weeks since surgery and things are going pretty well. The scar is minimal and the swelling is still going down. I have had many people say they feel like it is much better than my last scar. Um, thanks? I knew it wasn't the pretties scar but I guess to have others tell you that is kinda weird. But regardless, it is healing very fast and looking good.

Now the drain...
I am not a fan of drains. It is a love hate situation. I know you need one and it is helpful and all but man they kinda suck and especially when they don't work how they are supposed to. Mine stopped draining accurately about 6/7 days in. A lot of the drainage wasn't going into the drain but was leaking out of the hole entering my scar. Gross I know, but I would say 25% was going into the drain, the rest into bandages/gauze's. By day 12 I was done with it and luckily the nurse pulled it. Lets just say it definitely wasn't working and was practically completely clogged. I was told to express the buildup liquid at home and so I did. And I filmed it. Yep, totally did. So if you like gross weird videos you can see it here: https://www.youtube.com/watch?v=C9wX0Ec7zRk I have had some redness in the last few days so I stopped in to have it checked today and they had to puncture it and drain it as well. I am on antibiotics and hopefully it will stop accumulating soon.

The white part is what was inside... crazy!

Just a bit special. Drain issues. 

Liver
My liver was really good - legitimately normal while I was in the hospital! So exciting! But... then spiked into the 200's again a week later. Now it is trending back down, without any additional meds. They assume it is from having anesthesia as well as some of the anti-nausea and pain meds given. I just have a super sensitive liver now and forever it seems.

Diet
Since they had to cut the bile ducts in my neck, I was put on a strict NO FAT diet. Yep, no fat. nada. Not even supposed to have a gram! The reason is because fat processes through those ducts and in order for them to heal fully there needs to be no fat circulating through. I.e. no fat. It was torture. So many things have fat in them, and the things that don't like vegetables are really hard for me to eat/chew still. It's was an adjustment to say the least. Best non-fat find to date? Grandma Sycamores WHITE BREAD! And delicious, foamy nonfat chai lattes. Today the doc gave me the go ahead to have fat! Pretty excited to say the least! I actually had a break in appointments after and him and I were getting lunch at the same time so I got to share my fat-full meal (blackened salmon salad) with him and get to know him a bit better which was nice.

I received the pathology report as well. There was 38 lymph nodes removed, 14 of which had melanoma in them. I guess the large "tumor" was a grouping of matted lymph nodes, not just one big tumor. And that "numerous lymph nodes are grossly positive with tumor." There is something about reading about what you have that makes it that much harder. Although I know it is real, it is that much more real when it is on paper in front of your face. Never fun.

Now on to the plan. I will be doing full radiation on my neck starting on November 10th. This will hopefully kill the remaining cells left behind after surgery (we knew going in that it was impossible to get clear margins/all the cells). Radiation will be  20 sessions. Radiation is done everyday, Monday - Friday. I am not sure yet how long each one takes but I would assume I will be up there for about 1-2 hours each time. Planning today went well and I feel alright going forward. They made my mask as well as gave me my first tattoos, three of them. They are little dots to mark where they need to line me up each time. One on each shoulder and one in the middle of my chest. Primal style with ink and a single needle.

The center of the "X" is where the tattoos are (not the full ink you see here)

I was also presented at tumor board again (yes, I am told I am a "frequent flyer" there) and because of the cancer being so aggressive I need to hit it from two ways, and the options for that is chemo. The name of the chemo drug is carbo-taxel and it is able to be given while you are doing radiation, unlike all the immunotherapies that are the other options. This is an 5 hour outpatient infusion chemo that is given every three weeks, up to 6 times, and I am starting that on November 10th as well. And yes it is a make you sick, lose your hair kind of chemo. Right when my hair was really taking on some character. To compare it to my other chemo regimen, this is 2 drugs where the biochemo was 5 drugs at once. I'm hoping I tolerate it well. I had my ugly cry about it and my restless nights (probably just the beginning of those) and now am pretty ok with it all. The timing just sucks, but when is there a good time to start chemo and radiation, or a good time for cancer? The answer is never.

Brain radiation is still in the works, that's about all the info I have on that. Hopefully will find out more soon.

New scans (CT and MRI) on Friday the 4th.

I learned yesterday that one of the people I would always bump in to up at Huntsman (his wife is the mom of some of my childhood friends) passed away from his stage IV lung cancer, diagnosed in May. So hard. Last time I saw him he was having a hard time overall and it just makes me sad to see how many people are affected by this damn disease. Oy.



Here's to treatment options 9 and 10!

Here is a recap:
Surgery #1, Biochemo, HF10/Ipi, BRaf #1 Mekinist/Tafinlar, BRaf #2 Zelboraf/Cotellic, Nivolumab/Ipi Combo, BRaf #1 again, Surgery #2. Now radiation and chemo.

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…

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.

Update on my friend Mandy

As many of you have followed my journey you have seen that I have become near and dear friends with my melanoma soul sister, Mandy. We are fighting the same beast (hers has a little more aggression than mine sadly) and it has been a really hard few days/weeks for her. She has been inpatient at Huntsman Cancer Institute since the day after Thanksgiving.  What started with severe pain in her back, led to a very bad infection pocket in her leg with lymphedema. The infection came back as staph and she has done several rounds of the IV antibiotics to kill it. Her fevers are up and down and they won’t send her home until they are under control. They started radiation on her tumor in her groin to try and shrink it to reduce the intense and crippling pain she is experiencing. During her stay she not only has acquired pneumonia but she also has formed a new blood clot in her bad leg. She just can’t catch a break. I’ve been trying to spend as much time up there as I can as I know what being in there is like and once you are alone your mind starts to wonder into some not so great thoughts. It was hard to leave her when I went on my trip. Not only just to leave and have her not have as much support (I mean this lady has a support system for miles!!) but more that I feel guilty to be feeling good enough to head on a 6 day cross country adventure. I know I shouldn’t feel bad about it (she gets really mad when I say I do) but I do. I just wish she didn’t have to endure so many complications and could be out there enjoying life AND kicking this cancers ass. I hate that it is beating her up so much!

I’m happy we have each other though and I know if the tables were turned she’d be by my side as much as possible too. And I’d want her to be out enjoying her life too.  I just really wish she could catch a break and start to beat this cancer once and for all.

Keep her in your thoughts and prayers if you’re a prayer, I know her and her family will appreciate it!

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!

Approved by the FDA

Today is a great day in the world of melanoma treatment!
One of the clinical trials I am involved in was just approved by the FDA for treating late stage melanoma. My doctor, Dr. Robert Andtbacka, is one of the two doctors who published the results last year in a medical journal. Again, I am so lucky to have such amazing doctors on my team.
Here is the link to the article: A Cancer-Killing Cold Sore Virus Fights Late Stage Melanoma


This is the first trial I enrolled in and I was randomized to not receive the injections (T-VEC), only surgery. The second, and my current treatment, is also a form of the cold sore virus (herpes simplex 1) but just a different modification - named HF10.

It is great to see such progress in the treatment of this awful disease. Can't wait to beat it once and for all!

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...

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...

Scanxiety

Tomorrow is my scan day. Tomorrow we will find out if the cancer has stayed localized or spread. We will also find out if the treatment is working well enough to continue or if we will be switching treatments. We will be doing a biopsy tomorrow as well - one of my least favorite things. If we continue on with this treatment we will start the additional injections tomorrow as well. If we switch then we will set up a schedule to start the new treatment, most likely PD1. I am hoping that it is working enough to continue on this treatment plan but I am nervous that it isn't working as well as needed as I still have two large tumors in my neck. They were shrinking in the beginning but I feel like they have plateaued and stopped shrinking. I guess we will wait and see. I used to never be nervous about scans until this year. Now it gives me major anxiety, or scanxiety as it is called in the cancer world. It will be a long day up at the hospital, yet again but I will be happy to have it over with. Here's hoping for some good news!

Treatment #5

I completed my 5th injection/3rd infusion Wednesday. It was a long day yet again, but that is to be expected. My large tumor has gone down another 1cm and the smaller tumor has gone down .5cm! Excellent news! Because the large one went down, we were able to inject both tumors with the drug. The small tumor is farther away from my scar so it has a lot more sensation, and let me just say it wasn't a pleasant feeling. Felt like a hot iron being held to my skin.. But it is over quick enough.
This day I was bombarded with positive comments from my doctor and all my nurses. They all commented on how well I've been handling everything and how strong I am being. I was told my positive energy is a breath of fresh air and welcomed in the clinic. It was really nice of them all to share with me, really gave me a second wind for the day.
I have been really tired the last few weeks - whether it is from doing more everyday or the treatment, but I think it is a combination of the two. I have felt so much better each day that it is hard to just sit around. Working up my stamina - gotta return to work someday!
The infusion went well too, saw a lot of young people in the infusion room. I posted a photo on Instagram and someone who was getting treatment found it and commented. She is 32, has stage 4 Melanoma and is going through the same treatment as I am. I saw her check in to the infusion room too! So I'm hoping to meet up with her, to have a buddy in this process. Pretty amazing what social media can do! I also got a message from an old high school buddy that works up at Huntsman and has been trying to catch me while doing treatment but without any luck. He said to keep up the good fight and that I'm inspiring people I don't even know are watching. I needed all these nice messages today - was starting to get a little burned out. But not anymore!

After treatment I was really sore and a bit nauseous. Boo! Was hoping to escape side effects fully, but it isn't too bad so it is manageable. Just lots of rest ahead and some mellow foods to eat.

Have three weeks off until my next treatment/infusion and then will be scanned to see if we continue with the injections (for up to 13 more). Here's hoping!!

In the infusion room @ Huntsman Cancer Institute

After the injections

Tumor from the front

Slightly smaller!

Messy new hair!

Some good news on treatment day 4

I have now completed 4 days of injections and 2 infusions - two more combo days left! Half way there! Yesterday was a long day. I got to the hospital at 11:30 and didn't leave until about 6:15.. That's a long day at the hospital for anyone. They had a hard time starting my IV (nothing new) so that took much longer than needed and then they were behind in clinic - lots of people with cancer sadly. I had to see both my clinical oncologist and my surgical oncologist (which is also my clinical trial physician) as well as my clinical trial nurse for the injection. As I was being examined they said that the tumors feel softer and my main one that we are injecting all 5ml of drug into has shrunk 1cm. The newest spots, #3 and #4, are almost gone or untraceable. So we are only measuring the first two. Finally some good news! My oncologists are both optimistic about the treatment and pleased with my reaction thus far. After clinic I headed down to infusion and got my second infusion of Ipi while watching Cops and playing solitaire until my good friend Courtney came up and visited.
Huntsman Cancer Institute is so great. They know how to take care of their patients and spoil them. During infusion I get asked multiple times if I need anything and volunteers are so nice. I hope that when I feel better and have the time that I can volunteer up there. Their main volunteer is a charming older gentleman and when he asked if it was my first time there and I responded with it being my second, he asked if I had received my goodie bag. Nope - I got some great snacks but no goodie bag on the first one so he hurried off and got me an adorable chemo care kit. The kit included a book, a magazine, a neck pillow, an eye mask, hard candies for during treatment and soft socks. Such a small gesture that means more than people know.

I feel good today, no side effects except a bit of fatigue. I am told that I will probably feel some stomach issues come on in the next few days but for now I feel good. I tried to go to California this past weekend but I was flying on a buddy pass and the flights were too full to risk not getting back. I was pretty bummed cause I was looking forward to seeing my best friend and her extended family. I am hopefully able to get out to Cali sooner rather than later and that the side effects aren't too bad and allow me to do so. I will say that one of the hardest things about dealing with cancer is the inability to make set plans for the future because you just don't know how you will feel and if you will have the energy to do some things. I am doing soooo much better since chemo but I'm still not 100% and it could be months until then. I miss working and having things to do but have enjoyed meeting up with people for lunches and dinners and just enjoying my free time. I truly have some great friends and family.

I have three weeks off of treatment and am hoping I feel good throughout it and have some fun times ahead. I have a week long staycation planned with some good friends up at Snowbird, Utah so I'm looking forward to that. It has become a tradition and should be a lot of fun.

Connect the dots... 

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Happy my energy is coming back (and my baby fuzz hairs)

In the infusion room

Still swollen but it actually has gone down if you can believe it

Until next time, taking everything one day at a time. . .

Treatment #3 Done and New Hair!

Wednesday I had my third treatment and all went well. Last weeks injection made me super swollen and huge, this one not so much which is nice. Hopefully that doesn't mean it isn't working as good.. but we shall see. The injections haven't hurt really thanks to me not having any feeling on that part of my neck due to surgery. It has been a bit tight from the swelling and I can feel it inside my throat it was that swollen. This round isn't that bad. Next week I have my next infusion of Ipi and I am supposed to start feeling more of the side effects after that.
One fun thing that started on Monday is my hair is starting to grow back from chemo! My friend pointed it out and I told her that was a mean joke to play on me, but when I looked it really did start that day! It will be a slow process but I can see a dark hair in each follicle, it's a start! I'm excited to see what it is going to grow back in as... curly? a different color? We shall see!
I went to Bear Lake this last Monday for a night. It was a good getaway. I went with Maryann and Marty and their two boys, Ben and Jack. We camped and went to the beach. Had some food and just relaxed in a beautiful setting. I was pretty tired when I got home but it was worth it.
Today is Pioneer Day in Utah and I'm looking forward to my dads insane firework show tonight. He is a nut and has some of the biggest and scariest fireworks - it's great! I love big fireworks and it is always good to have the whole family together.
Tomorrow I am hopefully going to California to see my best friend until Tuesday. I am flying on a buddy pass so here's hoping I get on the flights! Her cousin, aunt and mom are visiting too so it will be a fun group of people. I need to go to Cali every 6 months or so for my sanity.. I am overdue. It will be good to get out before more side effects kick in.
I may have cancer but cancer doesn't have me. I will have as much fun as possible as I feel better. On to the next adventure!

 Tumor borders

 Extremely thin hair but with lots of little guys coming in - especially in the front! 

(scar on my scalp is from my first round of Melanoma in February 2009)

 Right after the injection - not too bad!

Beautiful Bear Lake, Utah

Day Two Of Treatment Done

Yesterday was my second day of my new treatment and it went well. This past week has been good and I haven't had many side effects besides being tired and swollen at the injection sites. Inflammation at the site is a good sign as it means that white cells are swarming the area and hopefully fighting the cancer cells. When I went in yesterday there was 4 swollen areas, possible tumors but we aren't sure (two are for sure tumors). It just means that if the medicine is working that the areas are swollen because they are being destroyed! That's the hope. The main tumor almost doubled in size which is scary but like I said I'm hopeful that it is the drug working and not the tumor growing out of control. My doctors feel it is the medicine which is nice to hear.

My surgeon saw my healed scar for the first time yesterday and wasn't too happy with how it looked. As you can see in the pictures, it isn't a happy scar and he wasn't happy about it. He said once we kick this cancer to the curb that he will go in an fix it. I'm not excited for another surgery but happy to have a better scar as it is pretty crazy. We shall see how it all works out. 

I truly am so lucky to have such a great medical team at Huntsman Cancer Institute. They are invested in my fight and talk to me as a person and not a walking melanoma case. While waiting for my drug to be ready yesterday a nurse and I talked about local restaurants to try. It's the little things that mean a lot to me. 

One of my best friends has made the comment that I'm not a walking melanoma, I'm still Alexis. I just happen to be fighting melanoma. This hit me hard because for the past 7+ months that's what I have felt like - like all my worth is tied to my fight right now. I need to still focus my energy on being me and not just my fight. It is a hard thing to change focus on but it will be needed so I can start my new life after cancer. Whatever that life will be.. That part I'm still trying to figure out. 

 The four areas - my scar looks angry too..

 Before the injection of HF10

 Right after the injection - I look like I have a golf ball in my neck!! 

This morning - it's gone down a bit from right after the injection

First day of new treatment

I have officially finished my first day of the new treatment. It was a semi long day but not too bad. To explain the treatment I am doing again I am receiving injections of HF10 (a modified herpes simplex virus) directly into the two, yes two, tumors in my neck. The injections are supposed to alert your immune system to a problem in the tumor and in turn it will attack the melanoma. Then in turn it should act as a vaccine so if there are other melanoma cells in the body it will kill them as well. I will receive 7 injections. I am also receiving 4 infusions of Ipilimumab (Ipi) which is an immunotherapy drug approved for the treatment of melanoma.

Today I was told there is a second tumor in my neck, right next to the other one. Also, the larger tumor of the two is growing fast so I am hoping this treatment starts working soon. The injections were virtually painless and quick once the drug was ready which was a pleasant surprise. The infusion was done in a very nice setting and a good friend came and helped me pass the 1 1/2 hours it took to infuse which was great. I haven't felt any side effects besides being tired, soreness of the injection site and a slight headache. The Ipi has the potential for more severe side effects - mostly bowel issues. I'm hoping they aren't too severe and pass quickly.

I am happy to have this treatment underway and have good feelings about it. Hoping things all go as planned and this is my final treatment. Period. Here's hoping the next few months are beneficial!

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.

Chapter 4 of the battle

As some of you have been following, I had my follow up scans this past week. Going into them I was anxious and had some bad feelings.. My fears were confirmed when the doctors came in with a sad tone and face. I have a new tumor growing in my neck. I can feel it so I am not surprised, but I would have loved for them to tell me that it was just scar tissue. A fine needle aspiration confirmed it was melanoma.
I had two treatment options presented to me. One is a clinical trial with HF10 (a modified herpes virus) in combination with Ipilimumab and the other is PD1 (Pembrolizumab). I have chosen to do the clinical trial as it is providing very good results so far. If the trial isn't showing good results I will switch over to PD1. Treatment will last 4-9 months depending on how my body tolerates it.  I am starting hopefully July 8th.
This is sad and frustrating to know that chemo didn't work and that this is an agressive tumor as it grew during chemo. I am clear everywhere else though, no evidence of disease anywhere else in my body or my brain. It needs to stay that way. I am hopeful this treatment will help me finally beat this cancer once and for all.
I'm planning on getting back to normal (or as close to it as possible) in the next few weeks and hope the side effects don't get in the way of summer. I am still taking things as they come and one day at a time - it's all you can do, and fight!

At the edge of the next battle...

Tomorrow is the day. Tuesday February 24th to be exact. I have said those words so many times in the last two weeks that I didn’t really think they would actually be a real thing and actually arrive. But here I am, prepping to start this journey tomorrow. Tomorrow is when it all begins, where this next chapter in my life starts. 

How many people can say that they know the moment that things will all be different? It is a strange feeling. Tomorrow I go in for surgery to remove the remaining lymph nodes on the left side of my neck, anywhere from 20-60 of them. Metastatic Melanoma has struck one for sure and it has grown to be over 2cm around.. pretty much an inch. After two biopsies and endless feeling of it, it has started to be visable and has become tender. I feel my body is becoming aware of what is inside and is starting to do something… lets just hope that something isn’t to spread. 

For almost 6 weeks now I have known my cancer has returned and for the most part have suppressed any major meltdowns, given the handful of minor breakdowns. I have been called strong and brave more times than I can even understand and I don’t know if I would consider myself these things. I think I just am taking things one day at a time and just am doing what I have to so I can move on to the things I want to. I have somehow learned to focus on the big picture and try to not stress the smaller details so that a better result may come of it. I will say that I can’t shake the thought of the worst case scenario though, as much as I have tried to avoid it. For some reason my mind can block out many details of this whole situation but can’t block out that. 

As for tomorrow I am going to be taking it second by second. I will take with me the names of each and every person who has offered their love and support for me since letting them in on my journey. My army is giant and it is strong. It is because of them that I will get through this next step.. 

Now to attempt to sleep a bit before it all… 

Some random things…

Surgery this time is the EXACT day and date of my last one 6 years ago, Tuesday February 24th. 

The time 11:11 has haunted me these past few days

I had 2 deja vu’s in the past few days, and that is how I feel I am on the right path

I have ate more food in the past 5 weeks than anyone should. Can’t fight cancer hungry!

I am more worried about my back getting injured in surgery than I am about the actual procedure they are doing.. 

Here goes nothing… on to the next battle we go!