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!

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...

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!

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.