Four Years Later

Please tell me your pain level on a scale of 1 to 10, 10 being the worst pain possible.  I have been asked this question about 100+ times during my latest stays at Moffitt.

I am currently admitted to Moffitt and was first admitted on October 9th.  I had been experiencing extreme pain in my upper left portion of my chest for almost a week, and finally called into Moffitt's DRC (Their version of an emergency room).  I decided I wanted to be admitted since I could not control the pain at home.

Each day the pain got worse (A 10 out of 10 on their scale occurred frequently).  The area on my chest was red, and the redness increased each day.  Along with these symptoms, my left arm started to swell. (By the way all the melanoma tumors are on the left side of my body).  Each day my arm swelled to the point where my hand looked like a blown up glove.  The pain was unbearable, and they had my pain meds increased to a point where many of the nurses told me they had never seen such a high amount of pain meds given to a patient before.

Finally, on that Friday after six days of these symptoms getting worse a surgeon walked in and started telling us that we may possibly have to amputate my arm!  As you could imagine, we were all in shock, as this scenario had not even been discussed all week as the arm got worse.  The next thing you know, my main oncologist walked into the room and said "We have a plan".  Thank goodness! Because at this point my family and I were freaking out.  Then about six surgeons came into the room and discussed the surgery they were planning.  They had no idea what was causing all this pain because all the scans were not showing anything helpful to figure it out.  So, they planned on going in surgically to see what was causing all this redness and pain.  They did let us know that one of the main vessels going to my left arm was surrounded by tumor, and this was being compressed by the inflammation, so the arm was unable to drain liquid out of it.  The surgeons did let us know there was a chance I could lose my arm if a life threatening situation occurred during the surgery.

My family, friends and I were completely terrified, and from the time the surgeons talked to us, it was only an hour and a half later until I was in the operating room.  They made an incision about six inches long across my left chest, and ended up finding a large infection under my muscle which they ended up cleaning up.  There was also a lot of dead muscle they had to remove due to the infection, which was also removed.

I went to the ICU for that night to recover, and my dad was able to stay with me.  The surgeons reported that what they found was the best case scenario and were very please with how everything went.

By the next day I was back up in a regular room at Moffitt to finish my recovery.  I had to stay three more days and then I was released to go home :)  Everything seemed to be looking up, and I was just to take my pain meds and antibiotics and continue with recovery.  I got to enjoy a week of freedom with boat rides, relaxing days at the house, and catching up with friends.

Throughout that week though, my left breast start to get inflamed, and had red bumps start to appear on it.  When I went to my checkup appointment that Tuesday, the surgeon and oncologist examined the breast and thought it was best to admit me to the hospital again.  This was on Oct. 25th.

The following day, after I had a CT scan of my chest, I was going into surgery.  They saw liquid underneath the incision and thought that may be impacting the breast causing it to swell.  During the surgery they reopened the original incision and cleaned out all the liquid that was there, along with taking a punch biopsy of one of the red bumps on my breast.

The liquid ended up being just post-surgery liquid (not any more infection).  They did end up leaving the incision open and not stitching it back together so that no more liquid would build up.  This left me with packing in the wound. It will have to heal from the inside out :(

We had to wait for five days to find out the results of the biopsy.  In the meantime, my pain has continued to get worse, and worse.  I now am on five different pain medicines trying to get the pain I'm having in my left breast under control.  The red bumps, we found out, are melanoma.

I have a wound vac on my open incision on my chest, that I will probably be wearing for a month or so, as long as insurance approves it.  The dressing changes for it every three days are excruciatingly painful, even with pain medicine given beforehand.  I do not look forward to them AT ALL!

The plan for the red bumps, or as we now know - melanoma tumors, will be a treatment called T-VEC.  They will inject each of the tumors with this treatment with a needle (I am also not looking forward to this either!)  We have to wait a couple weeks or so for insurance approval, and my surgeon wants the wound to have more time to heal and have the dressing changes not be so painful.

Unfortunately at this time, my breast is just as inflamed as it was when I was admitted to the hospital the second time.  Because I have tumors under my left arm, and the incision from surgery is above the breast, the lymphatic system has no where to drain.  This is causing it to stay super inflamed and is what is causing me all this pain.

We are now just trying to get the pain under control where I'd be able to go home.  But this requires me to not need any IV pain medicine, which I am very dependent on at the moment.  The scariest part of this whole situation is if the breast does not improve, it may require a mastectomy.  I am praying and hoping it does not come to this outcome.  So please pray that things improve after this treatment.

Now everyone knows the story (as best as I can tell it while I'm on an extreme amount of pain meds). I am so thankful for all the support I have received this month where I've been hospitalized almost the entire time.  My mom has once again stayed with me almost every night, sleeping on a cot in my room.  My dad subs in for her as much as he is able with work. My Nana came down from Pennsylvania to help me in and out of the hospital while I recover!  My amazing support system - Zack, Sam, Eric, Jenn, Kirsten, Scotty, Bri, George, Ashley, Mandy, Matt, Sue, Kevin, Deeana, and so many more!

I'm still in here for a bit longer, and always welcome visitors :)

It's getting harder and harder to stay positive.  I sometimes just think about why this had to happen to me, and why this fight against melanoma just won't end.  I need my support system more than ever now.  I'll try to update this blog again soon.

My hand at it's worst swelling (along with the rest of the arm)

The leg compressions I wear to prevent blood clots

My friend I've been attached to for weeks - we like to call him R2D2

My mom's cot to stay in my luxurious hospital suite

My button to dispense pain medicine on demand!

Two Years Later...

Hi everyone!

I know it has been quite some time since I provided any updates with my blog - about two years actually - so much has happened.  Time has flown these last two years, and it has been no less of a crazy ride dealing with life and melanoma.  It is so easy to push the disease to the back of my mind when I'm doing well, and although the last two years have been anything but easy, I wanted to provide some updates for friends and family to know what is going on.

I guess I can start with my current situation where I am sitting in my hospital room here at Moffitt Cancer Center.  I was admitted July 30th and we are hoping I'll be released sometime this week.  I ended up with colitis which is a very common side effect from my current treatment (Ipi/Nivo).  The inflammation was very extreme and I've had many days where I could not eat and am currently receiving high doses of steroids to correct the issue.  Today is one of the first days I could start eating some real food!  It has been a very miserable experience, and definitely my longest hospital stay EVER!

I've been extremely lucky to have my mom stay with me every day/night while I've been here, and also had some great visitors to keep me company.... (Thank you Dad, Zack, Jenn, Kirsten, Sam, Eric, Scotty B, Kevin, Deeana, Matt, and Sue).

I had started this current treatment, which is a double dose of two different immunotherapy drugs, about 9 weeks ago.  Everything seems to be going well, and the tumors seem to be responding.  We will find out for sure in a few weeks when I go for scans once I have recovered from my current situation.

Prior to this treatment, I was prepared to go through a pretty extreme clinical trial that ended up not working out.  It was pretty disappointing, as the trial is promising for a possible full response.  I had a surgery to remove part of my tumor and they actually would have used my tumor to create cells that would be put back into my body to fight the cancer.  The downside was the chemo regimen that I would have to go through before the cells were given back to me.  It was going to be very risky, but I was hoping for the best.  Unfortunately my cells didn't grow fast enough and I was unable to proceed.  The option is still on the table for the future, but it just isn't the right time to consider trying again at this point.

I also went through about three other treatments since I updated this blog last... each worked for a period of time and then I would stop responding.  It gets scarier each time a treatment stops working, as I've been through almost all the FDA approved treatments and many trials.  I can only hope they keep coming up with more trials and promising treatments until I finally can beat this cancer.

For now - I just can't wait to get out of the hospital and home to recover!

-Nicole

Better Days

I can't believe I haven't updated this blog since November! Time has just seemed to fly by lately, and life's been pretty good.  Things are relatively stable as I was able to go back on the clinical trial after the issues with my eyes.  There was another period, a few weeks ago, where the inflammation in my eyes returned, and I had to take another brief break from my medication.  But, as of right now, my eyes are getting better and I'm back on my the trial.

We have a little scare going on due to the last MRI that was taken of my brain.  The images show a spot on my brain that the doctors are not 100% sure about.  There is a chance it could be the cancer spreading, but my neurosurgeon seems to believe that the chances are its not cancer.  This was a month ago -- I get a follow up MRI next week on April 10th.  This will allow the doctors to make sure the spot either has gone away, or hasn't changed.  I could be something as simple as a blood vessel showing up weird in the scans... so let's hope for that!  Anyways, I was told not to worry about it, so I think I've been doing a pretty good job about not freaking out! Please pray that it turns out to be nothing!

In other news,  my non-medical news, I recently got a new job! I'm really excited to be able to take this new opportunity and advance my career.  Sometimes the worst part of dealing with this cancer is when it prevents me from living my life like I would if I was well.  I'm glad I was able to take a chance and keep my life moving in a direction I can feel proud of.  I'm even hoping to move out on my own again, as long as my health continues to stay stable.

So to wrap things up, the tumors are stable, my brain is under investigation, and my life is moving forward.  I've been in much better spirits these last few months, which has been a nice change from the darker periods I've been through with this disease.  There is a possibility that I may be able to switch clinical trials in the near future depending on how well the doctor thinks this current trial is doing.  Along with the MRI, I have my CT scans, eye appointments, and overall exams on April 10th.  Hopefully I can become better with providing updates, and will be writing again after next Thursday.

The Never Ending Battle

Sorry it has been so long since I've provided any updates on here.  Things were going pretty well for a little while, and it was nice to not think about the Melanoma for periods of time.  But of course another obstacle had to come along and add to this seemingly never ending battle.

A couple weeks ago I noticed my eye sight was significantly getting worse. Each day I could see less and less, so I let the clinical research team know, and they set me up with the eye doctor.  I was diagnosed with uveitis - swelling of the cornea- and inflammation of my eyes. These were caused by my clinical trial medications, so they decided to stop the medication until my eyes were back to normal.

I was put on steroids in the form of eye drops, and had to also be placed on an oral steroid to help with the inflammation. Currently I am still on both and waiting for my next appointment - next Thursday - to find out if there is any improvement.

I have a 21 day window that I can be off my clinical trial medication before it is no longer an option to return to that treatment plan. That gives us until the beginning of Thanksgiving week to have my eyes clear up and resume the medication.  Although it will be on a reduced dosage due to the complications, and can never go back up to full dose again.

And to add to the side effects, coming off the medication has been pretty miserable as well.  The area where the tumors are became very painful, and I could barely move my left arm.  I had to be placed on some pretty extreme pain meds that caused me to be dizzy and nauseous.  Luckily the pain, that was possibly from the tumors growing while not being on medication, slowly started to fade.

Its hard for me to believe that its been over a year now fighting this cancer, and I feel like not much has been accomplished.  The tumors are still there, and although the clinical trail was stabilizing them, they weren't going away.  Now with a reduced dosage, who knows how effective the medicine will be.  The next scans are in mid December.

I wish I could have a more positive post, but things are just not going so well.  Its been hard to stay hopeful when nothing seems to be getting better. This fight hasn't been easy, and imagining that there is so much more to go through has been weighing on me and bringing me down.

Cancer sucks.

Cycle 2 Results

Source

Yesterday I received the results from my CT scan, and its good news again!!! The tumors are still shrinking or staying the same.  There were a few that are now smaller since the last scan, and some have remained stable since then.  Overall we are at 27% shrinkage since the start of the clinical trial. I couldn't be happier for the awesome results so far.

I'm also going back to work starting on Tuesday next week.  I'm feeling much more energetic lately, and I'm ready to get back to doing something other than sitting around the house.  My doctors think its best for me to keep busy.

I started Cycle 3 yesterday, and this time I only have to go in for two checkups. As I get into these later cycles, there are far less appointments and tests I have to have done. Also, I won't have another scan for two months from now on, instead of monthly like before.

Well this post is going to be short and sweet -- just wanted to update everyone with the good results. I hope everyone has a great Labor Day weekend! :)

Smooth Sailing

Source

Time seems to be flying by lately! I can hardly believe next Tuesday I start Cycle 3 of my clinical trial and find out the results from Cycle 2. Although I had to go on short-term disability from work due to fatigue and nausea, it really hasn't been too bad for me lately. I can only hope for continued progress, and that the side effects stay minimal, as they have so far.

On Monday I'll go through quite the process again to finish off the cycle. Lab work, a MUGA scan, an eye exam, and a CT scan must all be done to track my progress. Should make for a really fun day! :/ Then Tuesday we return to find out the results from all the tests and get a refill on my meds. After this scan, I won't have another scan for two months since I'll be in the later cycles of the trial.  I am excited there will be less time I have to spend up at Moffitt, since I'm up there at least once a week at the moment. You know you're there too often when all the employees know who you are!

As nice as it has been to be able to get the rest I need, I have missed working.  It amazes me how fast I get bored during this time away from work. Guess there is only so much Netflix you can watch before you go crazy!  Hopefully I'll have more energy in the future so I can return to a more normal, active life.

Hope everyone is having a great week!

Cycle 1 Results

Cycle 1 of the clinical trial is over, and the results are in. The tumors are all shrinking!!! I received the CT scan results on Tuesday after my day of screening on Monday.  Of course we are all beyond excited to know these drugs are showing promise, and we are looking forward to more shrinkage and good news after Cycle 2 - which started on 7/29.

Although we received good news, I have been dealing with some side effects that started last week.  Pretty severe nausea and fevers were occurring, and after a check-up at Moffitt I found out I had an infection that the doctors believed were causing these symptoms. Thankfully after some antibiotics, I am doing much better. The biggest issue I'm facing lately is pretty extreme fatigue.  I'm always tired, and am sleeping all the time.

I'm back on short term disability at the moment due to the fatigue and lack of energy.  Hopefully I'll be back to normal again in the near future. For now, just relaxing and enjoying the good news!

Hope everyone has a great weekend!