Stage IV Realness - Surgery is Scheduled

Yesterday was a hard day. A hard day I wasn’t anticipating. I had my surgery consult to remove the tumors in my neck. I went in expecting a repeat of the surgery I had in February 2015 but this one is much more involved.

This time they will be doing another radical neck dissection and extending the current scar up behind my ear and a bit outward onto the scalp as well as extending the scar across the front of my neck. This will give them access to all the current tumors, around 6. The surgery is a long one and is much more involved than the first. I don’t really want to go into many details, but it is going to be rough. (If you truly want to know more I am happy to answer any questions you have) I will stay at the hospital for at least two days and then head home after to recoup. After I am healed to their liking we will start radiation; I assume about 4 weeks after surgery. And hopefully get my brain radiation then too. The goal is to remove the bulk of the tumors (it is impossible to remove all of them due to the intricate nerves and veins they are surrounding as well as the tumors are in tissue so the edges aren't clearly defined) and once the bulk is removed then hit it with radiation to hopefully kill the remaining cells. Radiation works better on a cellular level and not a bulk level, so it gives better chance at me killing the most cancer cells possible. 

Surgery is October 12^th. So basically I have just under 3 weeks to live it up before things get really real. I was sad to have to cancel a lot of things that I had already planned (two trips!), hopefully not letting down too many people and they understand the circumstances. They said I’d be down for about 6 weeks.

The hard part about yesterday was that reality slapped me in the face. I really, truly do have stage IV cancer and it gets scary. Decisions are hard and carry so much weight. Treatments are harder, more involved. I no longer have multiple options to choose from as far as treatments go. Things are getting more and more real, and the alternatives are just what you fear – end of life. As much as I do not want to have these tumors, this surgery will be a life changer for sure. The alternative is to just let them grow and then run its course through my body. There are some more systemic treatments available but my track record shows that these f’rs don’t respond to much and when they do they decide to stop responding at some point. Let’s not forget that my neck tumors started growing during biochemo – they are stubborn, painful, ugly shits.

As for the next 20 days I am going to do all that I can to enjoy myself. I am working on getting to California to see my best friend and put my feet in the ocean and maybe head to Disneyland. I am going to see my friends, eat lots of deliciousness, get ready to move into my own place at the end of October, work a little (it keeps me kinda sane) and just truly enjoy myself. I will have plenty of down time coming up that I can binge watch to my heart’s content. 

Shrink Fest

We are now 6 days into my new/old treatment of the BRaf Inhibitors (Zelboraf and Cotellic) and I am happy to say that they are shrinking the tumors as fast or faster than last time. I know my tumor was obviously much larger the last time I was on these but it is pretty amazing to see it work right before your eyes.

Here is a timeline of pictures to just show you how fast they work. 

7/7/16 Day one (took the first pills that night)

7/8/16

7/9/16 AM 

  7/9/16 PM (13 hour difference from the left)

7/11/16

So here are the pros and cons ...

PROS:

These drugs are truly incredible if you think about it. They attack the tumors literally instantly and you can see them disappearing before your eyes. They have minimal side effects and make me feel like a normal human without a constant reminder that I'm sick. The pain relief has been so great too. I haven't had to take a pain pill since Thursday 7/7 during the day which is great (minus scans cause I had to lay flat...) and then I have started to reduce my nerve meds as well. 

CONS:

These drugs are false hope. They are a temporary, bridge treatment until they stop working. Nearly every person on them will hit a plateau by month 9 and then growth will reoccur. 

I wish with all my being that these were permanent and that this excitement of them disappearing before my eyes was a permanent result and life can begin to head towards "normal." It is hard to tell people that yes this is incredible and looks like I am doing amazing but don't get your hopes up too high because we are on the roller coaster right now, highs and lows. For now I am enjoying the highs of it, and the lower pain. It is a day to day ride and for now I will be grateful for the progress I have in this moment. My neck is going to be back to "normal" in days which will be great - no visible tumors in a week I would say. We shall see! 

New Month, New Meds

Today I started my new meds - Cotellic (Cobimetinib) and Zelboraf (Vemurafenib). Try and say that 3 times fast... The Zelboraf are giant pills and I have to take 4 tablets twice a day, and the Cotellic are small and I take 3 tablets once a day for 21 days, then have a 7 day break from them.
Why the new meds? Well I ran into some pretty severe side effects all at once on my last combo of the Braf/Mek Inhibitors so we are trying this combo to see if we can still have some good tumor shrinkage still. These are still Braf/Mek inhibitors, just different. The best way I can describe them is to say that just like Tylenol or Aspirin both treat headaches, these both do the same thing just are slightly different. This combo is said to have a less aggressive side effect profile so things shouldn't get as bad as fast as it did with the previous combo.
My next appointment is February 23rd and I will have scans at that time to. We will reevaluate everything, once again, at that time.
I am happy to be back on a treatment because in those 10 days that I was off the meds my tumors began to grow and fast. I don't like being able to feel and see this cancer in my body let alone growing. Hoping to see them start shrinking again soon!

Thank you all for such sweet words following the loss of my dear friend Mandy. It has been a rough few days but also so amazing to see so many people sharing their memories and photos of her on social media. She was one very loved woman and is definitely missed.

Zelboraf pills

The not so happy part of my friend’s wedding day…

As I was walking to the temple to join my friend on her wedding day I had this constant pain on my neck/chin and it just had gotten worse in the past few days. Thinking it was just my giant tumor pressing on nerves and whatnot, I put my fingers up to my jaw line to try and disperse the pain (for some reason I feel like touching the area of pain makes it better… it doesn’t lol) but as I did that I felt a lump. Yep. A new f’n tumor. I felt around a bit to make sure it definitely wasn’t the large tumor just spreading out, and it definitely was not. It is its own beast. I also felt a new one behind my ear as well later on that day. I called up to my doctors immediately and since my scans and appointments were less than a week away they just told me they will address it then.

My neck has been a pretty constant source of pain in the past 6 weeks. The past 3 have been increasingly bad. I have had to sleep in only one position and it definitely isn’t my favorite.. But I need sleep so I will do what my body will allow.

My appointments can’t come soon enough as I need to switch off this clinical trial and on to a different treatment – hopefully Keytruda. Keytruda just made national news as ridding President Jimmy Carter of all his tumors from Melanoma in a short 4 months. This is our next line of defense and I can’t wait to hopefully see the same results! I’ll see what the scans and doctors say on Tuesday!

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...