Treatment

Update on Treatment

 

Hello All,

I thought I would start things out with a puppy, because puppies are adorable and cute.  In addition I wanted to take a moment and update everyone on what has been going on.  I actually have been holding onto this information for a while as I hate being the bearer of bad news.  So I have been personally dealing with some stuff that I spent the past month or so debating even making public.  While I love being the center of attention, when it is in such a depressing light it is a bummer.  About a month and a half ago, after receiving a CT scan, Clover and I learned that the second line chemotherapy was not working and there has been some progression of the cancer.  As you can imagine this is a pretty shitty situation.  The 1st line of treatment lasted around 6 months before it started to lose its fighting ability and this only worked for a few months.  As lines of treatment fail, our options become more limited.  For what initially looked like a "non-aggressive" cancer, this bad boy seems to be having a field day with my organs. 

I have met with my medical team and they have outlined a new line of treatment.  It will consist of an oral pill that I will take that is believed to help stabilize the cancer, preventing further growth.  Sadly it is not thought to have much effect on decreasing or shrinking the cancer.  We are also looking into other drugs that while not specifically used for my type of cancer could possibly have an effect based on targeting certain mutations seen on a liquid biopsy that was taken a while back.  We are also looking into a procedure that injects chemotherapy to target the liver tumors that have particularly gotten bigger for more focused therapy (More information on that to come).  Other than that we are searching the country for any and all trials that I may be eligible for.

Womp Womp

A Little Update


It has been a little while since my last post.  Nothing really has changed.  I am on this new chemo regiment which I absolutely despise.  My body handles it well considering the myriad of side effects that I could have, however I am a prissy bitch.  The new regiment has me going for infusion every other week however afterwards they suit me up with a wonderful little fanny pack of poison that continuously pumps medication into my body for 2 days.  Sounds great right?  What makes it even better is during that two day process, I have a tube coming out of my chest leading to the fanny pack which i get to worry about continuously as I sleep, ride the train or do pretty much anything.  The new treatment has provided a wonderful array of side effects which make day to day slightly more irritating.  I am pretty much rendered useless after chemotherapy and will just lay in front of an air conditioner hoping my body temperature will go down.  The next couple days will consist of stomach cramps, and an overall haze that I go through which I have dubbed “Chemo Brain”.  These side effects are minor considering the laundry list of side effects.  (Plus I STILL have my hair).  Overall the message of this post is simple.  Chemo sucks, cancer sucks.  I am dealing with it.
 

Hugs and Kisses

Brave New World

I haven't updated the blog in a little while.  Luckily I have been preoccupied with some amazing events in my life.  I recently tricked Clover into marrying me and enjoyed a fantastic honeymoon in Rome and Athens.  While there will be plenty of time for me to go into details about that, this blog post has more of a solemn tone. 

Prior to the wedding, during my routine doctor visit, they noticed my markers hadjumped up. These markers are used to track how effective the treatment has been at shrinking the cancer cells.  So essentially, the numbers jumping up scared the shit out of us.  We went for a CT scan, and the results showed no tumor growth, however no real shrinking either.  They also noticed a few nodules in the lung about a mm in size, however they were not able to say exactly what it can be, just that it will be watched closely.  The doctors made it seem like everything was okay and going smoothly.  We now know they were being overly optimistic to avoid putting a damper on the upcoming wedding. 

After returning from our honeymoon, I went to see my doctor to get back on track fighting this disease. The tone was more somber as the doctor explained that they decided to take me off chemo temporarily as they prepare me for a second line of treatment. This basically means that I will be receiving another type of chemotherapy infusion in hopes of attacking and continuing to shrink the tumor cells.  I will also be getting a procedure called a liquid biopsy next week in hopes of finding something in the cancer cells that could qualify me for specialized treatments or trial runs. 

This is an extremely scary moment in my life as we return essentially to square one.  We have no idea how effective this new line of treatment will be or if it will even work.  We also have no idea how my body will react to it.  I have been extremely lucky so far having minimal side effects, however a good thing can only last so long. 

I lasted an exceptionally long time on 1st line treatment with almost no side effects.  It gave me a confidence that almost made me feel superhuman.  Cancer was nothing but a minor roadblock in my life, and I was kicking its ass at a speedy rate.  This recent news has taken that away from me.  It has been a gut check of reality that I am dealing with a life-threatening disease that is slowly trying to kill me.  Perhaps it is this perspective that is needed to keep grounded and focused on the fight. 

It is hard to put into words the type of effect this has on a person mentally.  I lived my life always with the glass always half full.  Now, I hit bouts of depression that make me sympathize greatly with the people who suffer from it on a regular basis.  I will try to see the silver lining and say it aloud in hopes that I will believe all that I say but there is a harsh reality that is hard to avoid.  It is hard to see progress or failure in a disease you cannot physically see.  I feel fine for the most part, however every pin and needle, every cramp, every acute pain whether it is real or manifested from my imagination, is thought to be cancer slowly running a destructive train on my organs.  It acts as a constant reminder that there is a problem the world has yet to solve that exists in my body, and my goal is to live long enough to allow someone to find the answer. 

I created this blog to update friends and family of my progress, and the road ahead is sure to have ups and downs, but I know I can beat this.  I hope that these posts can serve as an inspiration for others that may be going through the same thing, that it is okay to have these feelings and fears, but that it is most important to never give up. 

Until next time.

Routine

Routine is such an interesting thing.  It gives people the ability to become used to something that many normal people may never experience.  Chemotherapy has become a routine for me.  I spend over 4 hours a week in a hospital receiving treatments that essentially pump poison through my veins.  I head home and know the exact time the anti-nausea meds will wear off and when I will become useless for the rest of the evening.  That time is 8:30pm.  I have seen the effects of chemotherapy on many people, and I know that I am luckier than most as I am able to handle it at a level that often confuses the nursing staff and doctors over at NYU. 

No person should ever become used to having an IV every week for 4 hours, especially while in their 30’s.  The human mind, however, is so unique in its ability to adjust and roll with the things that happen.  I joke that it’s like if you only had cereal with water instead of milk.  Sounds disgusting now, but I am sure any person could become accustomed to such a culinary delight with the right motivation.

I have been on chemotherapy infusions for almost 8 months straight.  This is dramatically longer than many people.  I have been lucky to have minimal side effects from the drugs, and my ability to tolerate the medicine has been my strongest asset in fighting cancer.  They now keep an emergency kit nearby because the chance of me having an allergic reaction increases the more times I have my chemo.  While I hope that never happens, it is always better to be prepared. 

I guess the point of this post is do not fall victim to routine.  Life is unique and special and every event you experience should be wonderful and new.  However sometimes routine is necessary for survival.  Find your balance.

I will keep fighting the good fight and telling my story as long as people will listen.

New Digs

Please Note:
FYI there will be a ton of new updates coming shortly.  We have been busy with the holidays and all that other good stuff, but we are back and ready to rumble! 

First Post of the New Year. 


Prior to the year's end, my Oncologist informed me that he recently accepted a new position at NYU and would be moving there starting in the new year.  Like most people, change scares the crap out of me.  We spent and are still spending a good amount of time ensuring that everything transfers over smoothly.  Insurance and all that jazz can be a complete pain in the ass, and it is important to stay on top of everything to ensure you do not randomly get a $5,000+ bill for a check up. 

This week was my first week at the new location, and it has been quite the transition.  The pros so far have dramatically outweighed the cons.  I have decided to list them out for anyone that is interested:

Pros:

  • Being treated at an academic research facility like NYU's Permutter Cancer Center allows so much more opportunity to find new ways to fight and beat cancer. (Clover is especially happy about this)
  • They have snacks, coffee and tea in the waiting room and the infusion room.
  • The infusion room was an actual private room dedicated just for me with a wonderful window view
  • There was a TV, though I did not use it
  • There is an on-site masseuse who provides a short massage to people receiving infusions.
  • There is an on-site nutritionist who met with me to discuss my dietary habits and ways to improve them
  • The staff at NYU has been absolutely stellar.  Every person I have met with has been pleasant and wonderful to deal with. 
  • The equipment being used seems to be top notch and more advanced than what I was previously used to.


Con's

  • Private practice provided a certain sense of intimacy.  When I arrived, the same faces welcomed me and I was checked in and hooked up to an IV within minutes.  NYU is dramatically larger and so there is more dead time spent in the waiting room.
  • I do miss the staff that was at the previous location. They were fantastic people and I wish them the best on their future endeavors.
  • Everything seems more corporate, probably because it is. 
  • The infusion chair is not as comfortable.


Overall, I could not be happier to now be associated with NYU's Perlmutter Cancer Center.  I feel that there is now an even bigger group of people working together to assist me in this epic battle against the C-word. 

Different Fighting Styles

Ryan:

Is it possible to be too positive? This is not really a rhetorical question but rather one I am posing to anyone that reads this blog.  When I was first diagnosed with cancer, one of the biggest things that people would tell me is to stay positive.  For the most part, this is something that I have no problem doing.  I am generally a pretty upbeat person and tend not to dwell on the negatives.  During this new phase in my life, I have found myself trying to find the silver lining in any news that I receive.

Here is an example.  A while back I had a liver biopsy taken to run tests on the cancer and see what possible treatments can be used down the line to fight it.  This procedure was not pleasant.  I was stabbed in the chest 3 times with a needle that sucked out small pieces of my liver.  Unfortunately, Clover and I recently found out that they were unable to run all of the tests on the samples because only 1 of the 3 samples taken were malignant, and they had neglected to run the more important tests first, and would thus have to take another sample (and stab me again) at some point in the future.  While Clover reacted to this by looking like an old Warner Bros. cartoon with steam coming out the ears, I simply turned to the doctor and Clover and said "Well isn't it kind of good that 2 of the samples they took weren't even cancer?"  In my mind, they had taken something they thought was cancer from my body and were wrong, so maybe there isn't as much cancer in my body as the scans show.  I’m not necessarily looking for a simple way out but I am trying to make the best of the information I am receiving.  

The reason why I am writing this post is because this past Monday, I had blood work done checking various markers in my blood to keep an eye on the cancer and how well the chemotherapy is going.  Clover will be able to fully explain the markers and probably go into further detail about the liver biopsy below, because to me it is a bunch of acronyms that I do not fully understand yet.  These markers have been tested 3 times since I started chemotherapy, and there has been a dramatic drop in the markers.  In some cases over 50%.  Now this does not guarantee anything, however it is a good sign.  While I am extremely elated with the news, Clover chooses to keep her feet on the ground.  She explains that while she is extremely happy with the news, she does not want to get her hopes up and build up false expectations.  I am not sure what way is better, but I do know that together it works for us.  I will be the one floating on air with every piece of news that can lead me to believe that I will beat this thing, while she sees everything for exactly what it is and tirelessly works with the doctors to make sure everything is being done to ensure my recovery.  

I have dreams regularly that I will go get these CT scans at the end of the month and the doctors will come into the room and say that I beat cancer in 6 months.  Will it actually happen? Probably not, but it's dreams that make up the future's reality.

 

Clover:

It’s true. I am definitely more of the realist, while Ryan is the dreamer. I hope the dreams prevail.

I’ll explain my side of the story with bad news first followed by good news.

tom_jerry_animated.gif

So as Ryan stated earlier, I looked a bit like an apopleptic cartoon when he told me that the liver biopsy did not yield the desired results. The reason for my dissatisfaction was multifold. First, there are quite a few masses in the liver, and though some are small, two in particular are pretty sizeable. Unfortunately, since the technicians were aiming for malignant tissue, it wasn’t necessarily the case that the seemingly malignant tissue was benign, but rather that they did not catch the tissue they needed. This bit of technical error, though not completely uncommon, was a bit difficult for me to grapple with because this procedure was done under CT guidance. Which brings me to my second point. The benefit of using the CT for guidance of the needle should to outweigh the risks of irradiating Ryan further, and though repeated CT scans for staging won't necessarily expose Ryan to enough radiation to be an independent risk factor for other malignancies, it does makes me wonder whether use of ultrasound guidance would have been a more prudent alternative for us to consider. Third, we recently started a third chemotherapy agent called Avastin, which works by blocking new blood vessel growth and essentially cuts off oxygen/food supply to the cancer. We held off on the Avastin until after the liver biopsy because Avastin can result in an increased risk of bleeding as well as impairment in wound healing. In order to take another biopsy, the Avastin would need to be stopped 4-6 weeks prior to the procedure. Since Avastin has been found to be very beneficial in metastatic colorectal cancers, we would not consider stopping it just to take another biopsy. Fortunately, we had strongly pressed the gastroenterologist to order the same genetic tests on the primary tumor specimen, so we were able to get back some of the results that the lab was unable to run on the liver specimen.

Now the good news. Yes, it appears that the markers that are used to track tumor progression have decreased. The tumor markers they are tracking are CEA, CA19-9, and CA125. They are a bunch of acronyms, and to be honest knowing them probably won’t blow your mind. However, as Ryan said, they appear to have decreased dramatically. For example, the CEA (carcinoembryonic antigen) was 3,683 on 10/1/15, then 5,135 on 11/2/15, and has now dropped to 2,424. To put it in reference though, a normal level of CEA is less than 3.7. So, while it is a large drop compared to previous values, which is fantastic, I am still waiting for the CT scan at the end of this month to create the full picture. No, my message is not as uplifting as Ryan’s. However, I think it is important that I remain cognizant of all of the “what ifs”, even while my better half feels much better clinically. It is still, as far as we know, Stage IV cancer. It is still an extremely serious condition. And while I don’t want to bring anyone down, I do feel the need to remain vigilant about any changes. I don’t know how quickly things change with Stage IV cancer. I have no experience with it, and hopefully none of you out there know either. I just know that I want to be prepared for anything and hopefully never need any of that preparation. Ryan needs to walk among the clouds while I dig down in the dirt. But ultimately I really hope that he is right. Mostly because Ryan West loves being right. :)

Infusion Update

I am a little late on the update, however here it is.

Last week, I went in for yet another chemotherapy infusion.  While I have become somewhat used to these, I know it is not really something that anyone should become "accustomed" to.  I have never been a big doctor guy.  If I got sick in the past, I just dealt with it myself.  This was not due to some bad experience with professional medicine, it stemmed more from stubbornness and the feeling that the cost never really justified the results of the visit. For the most part, I was generally a healthy person.  I would rarely get sick and a doctor's visit was usually reserved for an annual check-up or due to some sports related injury (which occurred more than it should).  Thankfully, it was Clover that persuaded me to see a doctor back in August which led to the detection of my cancer.  Now I have become accustomed to going to see the doctor at least once a week.  It is strange how quickly things can change. 

There is nothing really new to report on my end regarding my progress.  Clinically, I am doing better as my appetite has returned and I feel better than I did prior to treatment.  This most recent infusion was a little weird as they went through a vein in my hand. It was kind of funny - the nurses apologized for having to go through the hand because they know I like doing work while getting the infusion, and they were worried that the IV might hinder my typing.  One of the main changes to note is that the cold sensitivity in my hands has increased.  I am now wearing gloves in November when I used to be able to partake in a snowball fight bare-handed. 

For anyone that reads this blog, thank you and I appreciate you checking in on my progress. 

2nd Week of Chemo

This week has gone dramatically better than the previous week.  I did not have any sharp stabbing pains in my stomach and experienced only a few of the warned side effects from the chemotherapy infusion.  I now have an increased sensitivity to cold after the treatment, which makes things like a cool breeze or anything from the fridge my archenemy.  Luckily this only lasted about a day.

I wanted to take a moment and thank all the people that have sent some amazing care packages my way.  You are all absolutely amazing and each gift has brightened up my day.  I am unsure who sent me Hulk hands, but if you want to take credit for the awesome gift, please do so. 

In the photo above I am rocking an amazing “Straight Outta Chemo” shirt, which was given to me by Feetch.  If you have to go through chemo, you might as well look like a boss doing it.

First Full Week of Chemo

Ryan's POV:

I will admit, this week sucked.  I went into chemo like I do most things, overly confident and headstrong.  I thought to myself, “I am young and strong.  Chemo is going to be a breeze”.  I spent the day getting the IV, went home and felt great.  I am fairly certain that my mind helped coast me through a 2-day feeling of utter invincibility.  I returned home after hosting Tuesday Trivia (yes, I still work a trivia night) completely exhausted, which is normal since I am working 9am-11pm.  As I got ready for bed, I started to feel some stomach pains.  Those stomach pains turned into a 2-day hell where I felt as if I was being continually stabbed in the stomach.  The only times I felt relief was when I was in a bathtub full of hot water, which seemed to calm my body down.  Sadly, I could not stay in the tub forever due to obvious reasons as well as my dislike of pruney fingers.  I did try to power through work on Wednesday, though I am fairly certain I was completely useless and a mess.  Thursday I was forced to take off because I had not slept in 2 days and could not function.  When Thursday afternoon arrived, the pain had subsided and all that was left was a beaten man whose confidence in his chemo ass-kicking abilities was completely destroyed.  Thursday came to a close and I felt somewhat normal and able to handle basic tasks, but I still felt anxious.  When a person has cancer, chemo is not the only thing that messes with a person’s body.  In fact, EVERYTHING a person has to do regarding cancer, whether it be tests, procedures, or treatment all blow and make a person's life as difficult and annoying as possible.

 

Friday was the day of my liver biopsy.  I will leave Clover to write below exactly the purpose of the biopsy and what was done, however the goal was to take a piece of my liver to make sure that we are dealing with the same cancer and to run tests on the cancer to help better fight it in the future.  I was placed in an MRI machine which the doctor would use to create imaging to assist him in getting the samples with his magical needle that would be jammed into my body and somehow suck/cut a piece of my liver out.  The procedure appears as if it was painless, as there is nothing but a needle mark covered with a band-aid, but an overall feeling of weakness lasted the whole weekend.  It is now Monday, and I will go in for round two of my Chemo IV and hope for a better week. 

 

Clover's POV: Liver Biopsy

From what I can tell, the liver biopsy was done for two purposes. First to look at the histology of the tissue specimen to confirm that the lesions metastasized from the primary cancer rather than being a primary liver cancer in and of itself. Although it is likely metastastic based on the nature and number of lesions as well as PET scan results, technically, the only way to confirm this diagnosis is by biopsy. The second purpose was to perform gene mutation testing on the tissue. This is also being done on the primary tumor specimen, however the oncologist wanted the liver tissue examined as well, particularly since the first specimen was quite small.

The liver biopsy itself is done with CT or ultrasound guidance in order to locate the mass as well as visualize the liver anatomy, surrounding structures (to avoid poking the gallbladder, lungs, etc.), and ensure the correct location of the needle. In Ryan's case, it was done with CT guidance. Based on Ryan's description to me, it sounded as though they used suction needles and spring-loaded needles (which work pretty much exactly how they sound) to pluck out liver tissue. From there the tissue is fixed in formalin and various stains and such are applied, and maybe in a week or two we will receive the results.

 

1st Chemo Infusion

Ryan's Explanation

I got to sit in a cozy leather chair for about two hours as a small drip of liquid slowly crept into my veins.  The doctors and nurses listed off a bunch of possible side effects that I might feel immediately after the treatment.  We prepared for all of them.  Upon completion, the nurses asked how I felt and I explained that I felt no different from before.  In fact, as I got home I felt better and more motivated than I have been in a while.  I was able to get a ton of work done and actually enjoyed a full night's sleep without complications.  In my opinion, my first treatment was a success.  Now let's see how the week goes.

 

Clover's Explanation

Yesterday afternoon, Ryan underwent his first round of intravenous (IV) infusion chemotherapy. The IV was hooked up to a vein in his left arm and then the medication was given slowly over a period of 2 hours.  First, Ryan was given a variety of premedications to prevent chemotherapy-related nausea. He was given Aloxi (generic: palonosetron), Emend (generic: aprepitant), and a small dose of dexamethasone (a steroid). Then he was given the big gun medication. The chemotherapy agent is called oxaliplatin, which is a platinum-based anti-cancer drug. It stops cell division by binding to and crosslinking DNA, basically making little bridges that prevent the DNA from continuing to replicate. Oxaliplatin combined with Xeloda is what those in the biz call “first-line therapy” (the evidence shows that it should be the first choice for treatment) for metastatic colorectal cancer. So far, Ryan has tolerated the chemotherapy pretty well. And lucky for us, the anti-nausea medication effects should persist for several days, so that’s one less thing for us to worry about.