Friday, December 21, 2012

Ipilimumab AKA Yervoy

It's been a long, exhausting week.  Between battling colds, doctor appointments, scans, Steve's new treatment, Christmas shopping, etc.  It's been very exhausting.  So, I apologize for just getting around to blogging about this weeks appointments and treatment.

Steve had a neck CT scan on Wednesday.  He usually has 2 separate CT scans because the chest CT scan does not get quite high enough to get his clavicular lymph node clearly.  We had to be at the hospital at 6:00am this day (fun fun).  We had the kids spend the night with my mom and we got a room close to the hospital so we didnt have to get up at 4:30am to make it in time!  We also got to meet some good friends for dinner on Tuesday night.  They live over an hour from us, so we were kinda in middle ground and took advantage of it.  We had a great time.

Our welcome gift at the hotel.

Dinner with GREAT friends.

 On Thursday, we had to be back at MDA at 7:45 am for Steve's chest CT scan. It would be nice if 7:45 am meant that was the start time.  Unfortunately; between paperwork, waiting, Steve drinking the barium drink, etc. he didn't actually go back until about 9:45.  He finished up about 10:45 and we headed over to the melanoma waiting room to catch up with a friend who was waiting to be seen and her husband.  I hate to see her in so much pain, but we did have a fun 30 or 40 minute visit.  After our visit we headed down to have lunch in the cafeteria before Steve's 12:15 appointment with his doctor to go over his CT scans.

We got back up to the melanoma waiting area right at 12:15 pm.  They have a board that tells whether the doctor is on time, or how long they are behind.  When we had left to go downstairs for lunch 45 minutes earlier for lunch, it was "on time".  When we got back the board said "1 hour 30 minute" behind.  We expect this to happen sometimes.  The way we look at it is our nurse, PA, and doctor all give us every bit of time that we need.  I read about melanoma several hours a day, so I am always armed with a million questions for Dr. Kim.  Dr. Kim is always patient and takes his time to thoroughly answer my questions.  I am sure he does the same for all of his patients, so it does not surprise me to see when he is behind (although I am sure there are also a million other reasons they can get behind).  Luckily, it only took about 45 minutes to get back, so it was not too bad.

Dr. Kim went over Steve's CT scans and lab work with us.  His lab work looked pretty good, but his platelets were lowered a little.  He was not too worried about this because the CT scan showed that Steve's spleen was still enlarged from his recent viral infection.  The enlarged spleen will soak up the platelets and cause them to appear low.  The CT scans showed that the clavicular lymph node had increased in size.  It went from 2.0 cm x 1.8 cm to 2.7 cm x 2.5 cm.  The pulmonary nodule that we were not sure was melanoma or not had increased in size therefore confirming that it is almost definitely melanoma also.  That spot had increased from 5mm to 9mm.  He also has a few small jugular lymph nodes that are very small but have increased in size.  I am not sure of the measurements of those.  They were very small though.  We thought these jugular nodes were new, but apparently we just overlooked these on the original scan and they had never changed size. 

We were not surprised by the growth of the lymph node/pulmonary nodule.  He had not been on any treatment for over 2 weeks and we could feel the lymph node growing.  We were crossing our fingers for nothing new on the scans, and there wasn't.  So, that was the best news we could get! 

After discussing the scans we moved on to discussing treatment.  We already knew he would be starting Ipilimumab/Yervoy (an immunotherapy) and Dr. Kim ad discussed starting Temodar (a chemo) along with the Yervoy.  Steven and I had went back and forth on trying to decide whether or not to use the Temodar with the Yervoy.  Dr. Kim said that in a very small study it had shown to have better results than Yervoy alone.  One might assume that would make us automatically agree to the Temodar.  We still were not 100% sold.  Chemo is not good for your body.  Yervoy is an immunotherapy.  It is used to make your immune system stronger to hopefully have your body fight the melanoma on its own.  Chemo weakens your body and kills cells.  Temodar also crosses the blood brain barrier (meaning it will reach the brain unlike many other drugs).  Steve does not have brain tumors and never has.  Dr. Kim also said that the Temodar would not prevent the melanoma from spreading to the brain.  This kind of made the decision a little (and only a little) easier for us.  If the Temodar crosses into the brain, it could kill some of Steve's brain cells.  For such a small increase in results and only in a very small sample of people, it just did not seem like the right path to go down.  Also, Temodar messes with your blood counts and Steve already has lowered platelets. 

Dr. Kim agreed that these were all valid concerns and said he would leave it up to us if we wanted to add Temodar in the next round.  After we finished up with Dr. Kim, we headed down to the infusion center for Steve to get his first dose of Yervoy.  We got into an infusion room around 4:30.  After getting hooked up to the IV, pre meds, more paperwork, the actual 90 minute infusion, and observation time after the infusion, we did not get out of the hospital till around 7:30 pm.  It was definitely a long 12 hour day at MD Anderson.
Steve getting ready for round 1 of Yervoy. 

Getting the IV.
Yervoy is running!
The side effects of Yervoy are supposed to very minimal.  There are only 4 listed "common" side effects: fatigue, skin rash, itching and diarrhea.  There are some much more serious side effects that can occur: colitis, liver problems, inflammation of nerves, inflammation of eyes, etc.  Hopefully, Steve will tolerate the treatment well and we will be able to lead a semi "normal" life while he is on this treatment.  Unfortunately, "normal" was not in our vocabulary when he was on Zelboraf.  The treatment of Yervoy will be four 90 minute infusions every 3 weeks.  About a month after the final infusion Steve will have new scans to see how the treatment is working.  Our hopes are that the Yervoy shrinks his current melanoma areas and that nothing new pops up.

Yervoy works slowly, since it is an immunotherapy.  The Yervoy can inflame things and make things worse before they get better.  The thoughts are that the responders will have a long term response to this treatment.  I asked Dr. Kim what happens if he is a responder?  Dr. Kim says he will just get scans every 3 months.  If he is not a responder, we will have to figure out what approach we want to take next.  It will be a lonnnng 4 months until treatment is complete and we have scans that show whether or not he is responding to the treatment.

On January 3, 2012 Steve had the biospy which confirmed metastatic melanoma which was later to be determined to be stage 4.  Survival rates for stage 4 melanoma are grim.  We have had our fair share of ups and downs this past year.  But one year later (almost), Steve is still here.  He is doing fine and he is still only battling his original spots of melanoma.  Nothing new in a year!  We will take it! 

We would like to wish everyone a very Merry Christmas and Happy New Year!

Thursday, December 6, 2012

What's next?

It has been a little while since I blogged.  Thank you for all of the calls, texts, messages, etc wanting to check on Steve since I had not blogged lately. 

I put off blogging because things went downhill quickly with the Zelboraf and I knew we would find out at today's appointment what plan B would be.  I figured I would just put it all in one blog. 

Steve re-started the Zelboraf on Tuesday evening, 11/27/12.  He was only started on a half dose (2 in the am and 2 in the pm) due to him just getting over a virus and because of his prior record of side effects on Zelboraf.  The same evening that he started he became EXTREMELY red and rashy.  He immediately felt like he had a sunburn.  His skin did not hurt to touch, but he felt chilled and his skin felt like it was on fire.  He was also still taking his antiviral medications and some other supplements.  We aren't sure if it was the Zelboraf, or a combo of all of the medications together, but he vomited that night also.

 Within an hour so of his first half dose of Zelboraf (pictures do not do the redness justice)
 Again, pictures do not do the redness justice.  He was FIRE ENGINE red!!

Wed-11/28 Steve took the morning dosage of Zelboraf.  His skin became more red than the night before (if even possible), he started having nerve pain in both legs and also he started having visual disturbances.  The pm dosage brought chills, more nerve pain, anxiety, tightness in his chest, and overall aches, pains, and flu like symptoms.

Thu - 11/29 After the morning dose of Zelboraf, the achiness, chills, and red/flushed body continued.  The joint pain also hit really hard this day.  He started on Celebrex and Tramadol for the joint pain.  This continued through the day/night, but he also got nauseated again this evening.

Fri - 11/30 Other than joint pain, Steve had an ok day this day.  But, after the evening dose he vomited and started running a 101. 4 fever.  By now the joint pain was excruciating. 
 Steve (and Ashlynn) trying to "walk off" some of the joint pain.  This was as high as he could lift his arms and he had absolutely zero use of his hands.

Sat - 12/1 By Saturday, the joint pain was so bad that Steve could barely even eat.  His jaw (a joint) had so much pain that he could only open his mouth about a half an inch.  He was eating pudding so he did not have to chew.  His hands were basically useless.  I had to pick him out out of his chair because he could not use his hands or legs to get himself up.  (Mind you Steve is 6'4 and weighs 250 lbs and I am 5'2" and weigh 125 lbs).  I had to dress and undress Steve.  I had to give him a shower.  He could not lift his arms more than a couple of inches. 

 No matter how much lotion we used, his feet stay dried and cracked.  They were also ridiculously swollen.  They looked like they could 'pop' at any moment.  Ashlynn barely grazed his right foot with hers and it cut his foot open.

Sun - 12/2 Sunday morning I called the doctor on call and asked if he should continue and just hope things improved???  The on call doctor said that he should absolutely not be feeling that bad on a half dose and to discontinue the Zelboraf.  This doctor said once the pain went away to start on 1 pill a day and slowly build his tolerance up.  (We knew that this is not what his doctor would want to do.)  We discontinued and I called his doctor on Monday morning and got an appointment for today.

We saw his doctor (Dr. Kevin Kim) today.  Dr. Kim suggested that Steve meet with the infectious disease team next week to go over the virus that he had and make sure that he does not need any follow up care and/or tests.  He will have that appointment on the 14th.  Then, on the 19th and 20th he will have scans to get starting measurements of any tumors, swollen lymph nodes, etc.  (We are hoping that the only measurable disease is the clavicular lymph node.  There has always been a very small questionable area on his lung also - that did not show up on the last PET scan though).  On the 20th he will sign consents to start his new treatment. 

The new treatment will be Yervoy (Ipilimulad) with Temodar.  Yervoy was approved by the FDA in 2011.  It is a 90 minute IV infusion once every 3 weeks for a total of 4 treatments (12 week treatment).  The Temodar is a chemotherapy in pill form.  It is taken daily while on the Yervoy.  The Yervoy treatment can be taken with or without the Temodar.  Temodar is used mostly to treat brain metastis.  As of Steve's last MRI a few weeks ago, he has no brain mets.  However, the Tremoar is also used as a maintenance type drug to prevent brain mets and the 2 drugs together have showed overall better response rates.  Hopefully, overall Steve will have less side effects than the Zelboraf.  We know he will still have side effects, we know that no medicine come side effect free, but quality of life is important.  If only 5 days on the Zelboraf and Steve was pretty much crippled, it is not really something we not the doctor think that he should continue on. 

Another BRAF drug should be approved by the FDA by early next year (Dabrafenib).  This will give Steve yet even another drug option.  Also, keep in mind that although the side effects are horrible, Steve showed GREAT response on Zelboraf.  So, if ever needed, he can technically go back on Zelboraf in an emergency situation.  He would just have to suffer through all of the debilitating pain and side effects.  In a life and death situation, he wouldn't think twice about suffering until he found something else to try.  However, we and the doctor feel there is no need to suffer the way he was suffering on Zelboraf when he DOES have other options right now. 

Although I do not enjoy the fact that Steve is on NO treatment right now, and will not be for 2-3 weeks; I do enjoy the fact that his body will get a break.  We will be able to take the kids to see Santa, go to Festival of Lights and have an enjoyable, PAIN FREE, Christmas. 

Monday, November 26, 2012

Answers ~ Sort of......

Steve had his follow up visit with his melanoma doctor, Dr. Kim, today.  This was a follow up to his 11 day stay in the hospital after an "unknown" virus attacked him.  Before the virus (or maybe it was the start of the virus, who knows?) Steve had started Zelboraf and then stopped because he was so ill. 

When we left the hospital after 11 days, we had no answers.  Every team you can think of at MD Anderson had their hands in Steve's case.  Steve had many procedures (spinal taps, bone marrow biopsies, lymph node biopsies, more vials of blood that could ever be counted, etc.) to try and find what was attacking his body.  Unfortunately, if the clear cut every day virus' aren't found, it takes a very long time to get the results back.  MD Anderson did not even do some of the tests.  For some of the tests, there is only one lab in the entire United States that does that type of testing.  So, many tests were sent off and then we just had to play the "wait and see" game.  Since Steves blood levels were improving on the anti-viral medications that they gave him and his pain had stabilized,  they let us wait from home (mostly so Steve was not hospitalized for Thanksgiving).

Today, we found out 2 tests that come back positive.  One is EPV or Epstein-Barr Virus this is in the same family as mono.  Although the mono test came back negative, a different test confirmed a positive EPV infection.  The spinal fluid also tested positive for HHV-6.  The virus itself is very common, but it is EXTREMELY rare for it to invade your spinal cavity.  This could have been very deadly if we had not caught it so soon.  It could have envaded his nervous system and spread to his brain which could have been deadly.  Luckily, the infectious disease doctors got him started on an anti-viral right away.  They had actually discussed at one point waiting for results to come back before they started him on an anti-viral so they didn't start him on the wrong one and have to switch.  Thank goodness they went ahead and canned that idea!  Both of these viruses are very common and lie dormant in about 90% of people by an early age.  Weakened immune systems, trauma, mental stress, and some medications can cause a flare up.  We will never know 100% what caused the flare up.  I think it was the Zelboraf, but Steve was also extremely stressed at the time due to work and bad side effects from the Zelboraf, so we will never know. 

Anyhow, now that we know what caused it, that is behind us.  He will finish up his anti-viral medication and we will stay on top of any immune related issues.

Now, on to the melanoma.  Since the FULLY checked every inch of his body, inside and out while he was hospitalized, we have a good idea on what is going on with his melanoma.    The Zelboraf had significantly shrank his lymph node and also lowered the SUV from a 12 to a 4 (this is a number used to measure how active the tumor is).  He has been off the Zelboraf about a month now and the lymph node is back to its original size.  BUT, it is still his only melanoma. 

So, where do we go with treatment?  I went in knowing that Dr. Kim would suggest putting Steve back on the Zelboraf, so I was fully prepared with all my questions.  I highly respect Dr. Kim and even though I had planned on shooting it down, after he went over all of the things I had not thought about, I do agree that restarting the Zelboraf is the best bet right now. 

We have other options (or so I thought - haha -you all know I think I know everything!).  Surgery?  Well no, because his immune system is OBVIOUSLY weak right now and that would be too risky.   Yervoy?  Why start something that we are unsure of when we KNOW the Zelboraf was working?  Finding an opening for the Anti-PD1 trial?  This was my choice.  Thankfully, Dr. Kim is smarter than me :)  If we get Steve enrolled in the Anti-PD1 trial and he has some sort of flare up of a virus like he just did, he would get kicked out of the trial.  Once you are kicked out of the trial, you CAN'T get back in.  You have to wait until the FDA approves the treatment, but what if that never even happens?  We DO NOT want to lose our chance at the Anti-PD1 treatment.  It is the latest and greatest.  Also, TIL treatment is another treatment out there.  But, it involves chemo, and depleting your body and making you very susceptible to infections, viruses, etc. 

So, it makes sense to re-try the Zelboraf.  Steve started it tonight.  It is a reduced dose.  Only 2 pills in the am and 2 in the pm.  He originally started at 4 in the am and 4 in the pm.  Hopefully his body can tolerate the Zelboraf at this dosage and maybe even eventually be able to up the dose a little.  He will be seen every 2 weeks for a while to keep a close eye on all of his blood counts and everything, although his scans will still be every 8 weeks (I think?  Maybe 6?)  IF the Zelboraf is not working, stops working, or is too hard on his body, then we will probably move along to Yervoy.  If that does happen, they will probably go ahead and surgically remove the lymph node and harvest it for the TIL treatment.  At that point they would expect Steve to be fully recovered from the virus and his immune system doing better over all and able to handle the TIL treatment. 

So, that is where we stand for now.  I will update soon and let everyone know how the Zelboraf is going.  The good thing is it causes shrinkage very quickly, so I should be able to feel his neck in a few days and know if it is working or not.

Thanks for all of the calls, texts, cards, emails, prayers, etc.  Love you guys!

Monday, November 19, 2012

Home at Last

Yay!!! Home at last!!!!

Home with no answers, but the doctors agreed that we could wait for the tests to come back from the comfort of our home rather than sitting in a hospital room.  Hopefully we will know later in the week, or at Steve's follow up next Monday.  (or we may never know anything)

I am wiped out.....that is all for tonight.

Sunday, November 18, 2012


Absolutely nothing medical happened today.  The rounding doctor came by and basically said Steve is now famous within MD Anderson.  He was very frustrated that he is now off of Steve's case since a a new rounding doctor will come on tomorrow (this will be Steve's doctor coincidentally).  He really wanted to see the case through and figure out what in the world caused all of this mess with Steve over the last 10 days (or more if you count the several days at home prior to being admitted).

They are just waiting on the groin biopsy (which should almost 100% be back tomorrow) and the bone marrow biopsies to come back to rule out any other type of cancer.  We should hopefully go home tomorrow or Tuesday.

Steve has been very sleepy today.   He didnt wake up till almost 10 am.  We ate breakfast and then he fell back asleep.  I woke him up @ 11:30 and told him we needed to go for a walk (the doctor had wrote orders ok'ing him to be completely disconnected from the IV pole and to leave the floor).  Other than to and from the bathroom he has not walked around at all this entire time.  In the beginning he was in too much pain, then he had one procedure after another (many requiring him to lay flat anywhere from 2-4 hours), then he would be too sleepy, etc, etc.  So, anyhow, I made him get up.  We went down to the laundry room and started our laundry.  While waiting on the clothes to wash, we went up to the observation deck.  It is a gorgeous view of the city from up there.  Then we walked downstairs and outside to the front of the hospital.  We found a bench and sat a while.  It was gorgeous out today and the first time he has been outside since 11/9/12.  We headed back upstairs and finished up the laundry. 

 View of Reliant Stadium from the Observation Deck - Go Texans!

 Suuuuure I know how to play the piano ;)
 My LOVE! <3
 Checking out the view
 Steve "fixed" the TV in the laundry room - It had a note that said "Broken call maintenance" (all he did was press one button)

We came back to the room and Steve showered.  He had not been able to shower for 48 hours due to the bone marrow biopsy and he was sooooo ready for a shower.  By this time it was almost time for the Saints to start (Who Dat!!!).  We ordered Papa Johns and had pizza and wings.

Steve fell asleep right at halftime.  I woke him up after halftime was over and asked if he wanted to sleep or watch the game.  He said he wanted to sleep.  That was around 4:00 ish?  It is 8:15 and he is still sound asleep and will likely be asleep for the night.  His sleep patterns are very weird, and these are the deepest sleeps ever.  I was talking with 2 nurses and an assistant right by his bed (and we weren't quiet) and he didn't budge. 
 Maybe he won't read the blog and see this pic :)
Catching some serious flies!!!

Anyhow, hoping for answers tomorrow.  If they have no answers, that is ok too.  As long as his numbers are improving, we just wanna go home!

Moon Shots Interview

Steve was interviewed after the Moon Shots announcement a couple of months ago.  We did not realize that the video was already posted on You Tube. 

Here is Steve's interview immediately following the Moon Shots announcement.

Saturday, November 17, 2012


I will make tonight's post short.  Here is the info we got today:

Xray - ok

Groin Biopsy - No signs of melanoma, still waiting on other stains from the biopsy to come back that would check for lymphoma or virus'

Brain MRI - all clear - no melanoma, nothing abnormal

Bone Marrow - Still Waiting on results

Spinal Tap - No Melanoma, waiting on other labs

Virus Testing - CMV (as well as all virus') have come back negative.  There are some virus' that there are not even tests for.  The infectious disease doctor is also leaning towards something in the CMV family and said that sometimes the blood will give a false negative.  They will also check the spinal fluid for CMV

We are **hoping** to go home on Monday, no later than Tuesday.  The Dr. said he could have sent us home today, but Steve would have had to put a port put in and went home on IV fluids and antibiotics.  Most of the tests will be back on Monday.  He said he hated to put the port in and then Monday it show that it wasn't needed and then Steve would have to come back in and get it removed.  So, it made more sense to just wait it out and see what Monday brings. 

Steve's platelets are going up, his lymphocytes are going up, his liver enzymes are going down, no fevers, no pain (other than from the bone marrow biopsy), so whatever was causing so much ruckus is getting better for sure.

Spinal tap in the middle and bone marrow biopsies from the left and right.

Friday, November 16, 2012

Weekend Getaway

I guess that's what we will call it "a weekend getaway".......Realistically we will be hanging out at MD Anderson all weekend waiting on cultures to grow, waiting on labs to get back, waiting for answers.  Waiting.

The morning always starts pretty early.  Usually, the rounding melanoma team is in our room by 8am.  They are always very thorough and never rush us.  As much as I don't want to be here, we have really enjoyed Dr. Davies and Jessie this past week.  I was shocked when they came in this morning and told us they still were waiting on labs/cultures/etc.  I thought for sure because they changed his anti-viral medicine last night they were on to something.  I was sure they were going to come in and tell us Steve was having a CMV flareup.  CMV (cytomegalovirus) is a virus that 60-80% of the population is exposed to by the time they are 2 years old.  As long as you are healthy, you typically will not have any symptoms, or may have cold like symptoms (and just assume it is a cold).  The virus usually just lays dormant in your body.  When you have a weakened immune system, the virus can reactivate.  Steve has ALL of the symptoms of CMV, even jaundiced, yellow eyes which I had brought him in for on the 5th.  I still **expect** when they get all of the tests back that they say this is what he has.  The problem is the anti-viral medicine used to help with the infection can only be given by IV.  So, at some point, if we ever get to leave, Steve may go home with a PICC line and anti-viral meds.  But again, this is all Dr. Google Jenn's theory.  We will see what all of the tests bring.

When Dr. Davies was in this morning, he gave us the run down on what to expect for the day.  Steve would have a chest Xray to make sure there was no pneumonia working it's way in since he has developed a bit of a mucousy cough.   Dr. Davies also ordered an MRI of the brain because Steve has been extremely fatigued for the last 2 days.  One might think "hey, he has had a lot done, it is normal to be tired."  Well, it's not that kind of tired.  It's the sleep HARD for 36+ hours and hard to waken.  He slept through every vital check, every phone call I had, every time I opened and closed the door, etc etc etc.  So, Dr. Davies wants to be sure nothing is going on upstairs. (CMV can affect almost every organ in your body, even your brain). He hasn't had the MRI yet because he had to have another spinal tap also.  They had to take a lot more spinal fluid this time, so he has to lie flat on his back for 4 hours.  So, the earliest they can do the MRI is 10 pm tonight.  The MRI team is 24 hours.  They may do it late tonight, or early in the am.  Steve also had a bone marrow biopsy earlier this afternoon.  It was kinda neat to watch.  They did it right in the room.

 Steve getting prepped for the bone marrow biopsy.

Between all of the blood they have taken, IV's (they move them from arm to arm every couple of days), lymph node biopsy, 2 spinal taps, and a bone marrow biopsy, I think he is tired of being poked.  That is just a list of the "pokes".  He has also had a back Xray, spinal MRI, PET scan, urine tests, had dermatology check all over him, and had probably over 30-40 doctors, nurses, students, techs, etc through our "rotating door".  Needless to say, he is mentally exhausted.  He is ready to go home.  He missed Sadie and Ashlynn.  We sure hope to have more answers over the weekend and/or early next week.  Next week, his actual melanoma doctor will be the doctor on rounds - yay!!  (Although we were more than pleased with Dr. Davies and Jessie this week too).

I will be thinking of all my BAMW's this weekend!  You guys have a BLAST at the walk.  I wish I were there to hug each and every one of you!

Thursday, November 15, 2012

Sleepy Time

I'm not quite sure what the deal was with Steve today.  I woke up at 7 am and he was sleeping.  He slept HEAVY until 8 PM.  He woke up a few times when some doctors came in, but was even difficult to wake.  I am not sure if all the days/nights of limited sleep finally hit him?  If it is something related to whatever is going on?  Or what?  He even slept through all of his vital checks.  He fell asleep while taking a drink of water and spilled his water all over himself and the bed. It was a very odd day.

I left at 11:15 to make it to Sadie's school by 12:15 to have lunch with her. It was her Thanksgiving Feast (Well, we had the Jack in The Box Feast. We leave the Thanksgiving Feasst in my moms hands!!!)

Me and Sadie Rae <3
 Sadie wanting the pictures to be OVER!

On my way back to MD Anderson, I stopped at my baby brothers accident site.  For some reason this place means more than me than the cemetery.  I always feel his presence at the accident sire and I needed some comfort.  I cried, because I miss him so much, but yet had comfort in being there.  After poking around a little bit (45minutes), I fixed his road side cross because it was leaning a little and was coming out of the ground and then I got back on the road. It definitely did my head some good to visit.

 I couldn't get me and the entire cross in the picture.

When I got back, Steve was still sleeping.  He didn't wake when I came in, and was hard to wake when the infectious disease doctor came in.  He did wake for a few minutes so she could check him over.  As soon as she was leaving, dermatolgy was coming in.   They wanted to take some photos for student purposes, but Steve said maybe tomorrow.  After they were gone, I gave him the menu and said he needed to pick out some dinner.  He fell back to sleep with the menu in his hands. 

I'm baaaaack....

I was worried about a friend of mine that had a major surgery on Monday and was having an ultrasound today to check for blood clots due to swelling in her legs.  I messaged her mom on Facebook and her mom told me she was back in her room on this floor.  I darted out the door to go check on her.  She was in so much pain.  She was exhausted physically and mentally.  I wish I could take even half her pain away.  She needs a break!!

I also got to visit with another online friend.  I met Judy the day Steve was admitted.  Later I added her on Facebook.  She sent me a message and said "If you would have said you were 'Just a Bump in the Road Jennifer', I would have known who you were.  That was a nice feeling.  I just met someone who found and reads my blogs that is not my Facebook friend or a melanoma group friend!  While visiting Judy I found out she found my site from my MD Anderson blogs.  (Speaking of, I haven't done an MD Anderson blog lately.  I need to contact my communications contact and work on that!)  Judy is doing a very long and intense treatment, but is doing (and looking) GREAT!  I was so glad to meet her.

 Thanks for sending down the treats, Judy :)

There is an AIM walk this weekend in North Carolina.  I wish I could be there to meet even more of the awesome friends I have met through the melanoma groups.  My friend Tiffanie lives in South Carolina and will be walking in honor of Steve.  Also, my best friend that I have never met (I swear we would be though!) Chelsea, will have a "Steve on a stick" so Steve can be at the walk.  She will take pictures of Steve "doing" random activities at the walk.  Did I mention that Chelsea rocks?  (Read her awesome blog here)

So, now that I have made you all read my ramblings, I will get to the medical stuff.  It's what you're here for, right? lol  Well, I have no news.  Pretty much everything is the same as yesterday.  (Other than now Steve sleeps 24/7 - he is asleep again).  The few times Steve has woken up, he tells me that he feels very weird today.  The rounding melanoma doctor came in early this morning.  They were still waiting on lots of labs to come back and then were having a meeting a little later with all of the doctors involved to make sure everyone was on the same page.  The infectious disease doctor said they will need to repeat the spinal tap because they need more fluid.  She did say that the first  spinal tap showed some abnormal cells which could be sign of a viral infection.  They also want to go ahead and do the bone marrow biopsy after all.  The rheumatolgist came by and asked some questions, but his 14 vials of blood have not come back yet.  Hopefully those will start coming in by tomorrow.  Dr. Kim, Steve's actual melanoma doctor came in today.  Yay!!!  It's amazing how much better you feel just by laying eyes on YOUR doctor.  All of the other doctors are great.  Dr. Davies and his assistant, Jessie have been AWESOME.  But, there is still something quite indescribable about seeing your doctor come strolling in for the first time since Steve was admitted almost a week ago.  (His doctor has been out of town.)  Dr. Kim gave me a big hug and went over everything going on.  He has been kept in the loop even while he was out of town.  He agreed that once this is all cleared up, trying Zelboraf may not be the best idea since they can't guarantee that the Zelboraf didn't directly or indirectly cause whatever is going on.  He is going to double check their Anti-PD1 trial to see the qualifications.  I let him know that is the next treatment we are looking to do and/or surgery to remove the melanoma lymph node.  Obviously, we will have to revisit this after we get all this figured out. 

I got some good news for me today.  About 2 years ago (before Steve's diagnosis) I began having lots of unexplained issues.  The issues became so bad that I had to quit my job.  While the some of the symptoms have improved, others have not.  In reviewing my labs for the last 2 years, I found that my white blood cell count and platelet count have been low on EVERY test for the past 2 years (and I have had many).  Why did no one else catch this pattern?  When I mentioned it to the last endocrinologist, he said I need to see a hematologist.  I spoke to Steve's hematologist (who is FANTASTIC !!!) about this issue.  He is the "Professor and Chief of Benign Hematology".  He agreed to see me.  I called down to get myself registered as a patient, but have to bring my medical records to the office tomorrow.  I actually happen to have all of them with me because I was going to use this down time to get everything together to fax to Mayo Clinic in MN.  I wanted to go to Mayo because I need more than one type of doctor and they work as a "team", pretty much like the care Steve is getting now.  Once I see the hematologist, he will be able to refer me to endocrinology and rheumatolgy for the other issues that need addressed.  I am crossing my fingers that all of this works and I don't have to travel all the way to Minnesota after all.  This will work out much better for us for so many reasons. 

Thanks for reading a long rambling blog tonight.  I hope I have some real information to deliver tomorrow regarding Steve's issues.

P.S. While typing this, the nurse just came in and changed Steve's anti-viral medication from one to another.  Does this mean they found something?  I guess we will find out in the morning!

Wednesday, November 14, 2012

Still Waiting and Wondering.......

Today was a lot less hectic than yesterday.  We saw the rounding melanoma team this morning.  They decided to cancel (unless the need presents itself) the disc biopsy.  From the disc biopsy they would be checking for cancer cells in the bone and they do not think that that is what is going on.  The rounding Dr. did want to do a biopsy on one of Steve's swollen lymph nodes in his groin area.  He had 4 lymph nodes that lit up on the PET scan.  We must have missed this somehow, or were not given this information until today.  When we got the original PET scan results in, not all of the slides were back yet, so I don't think we ever knew this until today.  Regardless, the Dr. still does not believe the lymph nodes are melanoma.  He still believes that Steve has some sort of unidentified virus. 

So, around noon Steve had a biopsy of one of the groin lymph nodes.  This will check for melanoma and/or lymphoma. 

We still do not have any results back from the spinal tap.  Some results may start trickling in tomorrow, but many of them will take much longer.

The hematology team came around and also cancelled their bone marrow biopsy.  Again, it is always still an option if needed, but they really feel this is a virus and the back pain is just some unrelated back problem.  The hematologist feels that the enlarged spleen is the cause of the low white blood cell and low platelet counts.  Once the spleen becomes enlarged, it acts as a sponge and holds on to the white blood cells and platelets.  This is what they think is dropping the platelet count daily.  We have to watch his platelets, because obviously low platelets is dangerous.  We have to watch the spleen, because if you rupture your spleen, it is NOT good.  Worse case scenario, Steve could possibly have to have his spleen removed.   The problem is your spleen is responsible for helping to fight a lot of infection.  So, if it was removed he would have an even weaker immune system than he already has.  He would need to stay on top of all vaccinations for flu, pneumonia, etc...

He has had no fever today and his rash is looking better.  The infectious disease team came around.  They are waiting on cultures to come back but are looking at mono as a possible cause.  Mono can cause an enlarged spleen.  (They didn't mention this to us at any point yesterday, I think someone went home and googled last night....haha).  I've looked at mono symptoms and though Steve does have some of the symptoms, he does not have all or even half of the symptoms.  The infectious disease team took him off of the bacterial antibiotic and started him on an anti viral medication. 

Hopefully tomorrow Steve will have no more procedures and it will be a day of rest and possibly a day of answers, or at least a day of getting closer to answers. 

Tuesday, November 13, 2012

Busiest day EVER!!

Luckily Steve and I both got a decent night of sleep.  We sure needed it.  It was a crazy busy day today!! 

Early this morning, the rounding melanoma team came in.  They gave us a run down of the day.  Steve's platelets had dropped again.  They were in the low 30s.  The platelet count needed to be 50 or above for the scheduled spinal tap (lumbar puncture - AKA - LP).  So, platelets were ordered for a platelet transfusion.  While we waited for the liquid gold to get here, Steve was seen by a slew of white coats.

The melanoma team let us know that Steve had a few spots that lit up in the PET scan.  His spleen and a few lymph nodes.  His spleen was very enlardged.  They reviewed the scans multiple times and they do not feel that the way the scans lit up that it is a spread in the melanoma.  Take the spleen for example, if you had a PET scan that indicated a tumor, it would typically show a normal sized spleen with a small (where the tumor was) spot lit up.  Steve's entire spleen was lighting up.  That is just not typical of cancer (usually).  So, they are pretty confident that whatever is going on is some sort of viral or bacterial infection (they are leaning towards viral) and the inflammation is causing the light up.  Since they do not think it is cancer related, they have cancelled the biopsy of the spine and the spleen for now.

The infectious disease team also came by.  Steve was running 103 fever this morning, so they decided to go ahead and start him on an antibiotic.  They had been holding out on the antibiotic because they wanted to have biopsies that were not influenced by the antibiotic.  But, since his platelets and white blood cell counts are low, he is running high fevers, and his liver enzymes are still high, they figured they would go ahead and start the antibiotic now.  The started him on Cefepime.

Around 12:30 Steve had a spinal tap.  They will check this fluid for infection, and or cancer cells.  They will also use this fluid to try and culture and see if they can pin point an infection. 

 Steve after the spinal tap. 

The hematologist team came by and asked a slew of questions.  They will perform a bone marrow biopsy in the next day or two.  They will look for any signs of leukemia and/or infection.  Leukemia can occur in people that have had chemo (although they still do not think this is the case with Steve, they just need to be sure to rule out EVERYTHING!)

The dermatology team came by and looked Steve's skin.  They did not find anything suspicious looking, but prescribed some new lotions for his rash that popped up over the last couple of days.  They think the rash could be cause by his high fever.  It looks a lot like the Zelboraf rash, but he has been off the Zelboraf over 2 weeks now. 

New rash today

Steve also had a ultrasound of his 'splenic vein'.  The ultrasound tech said other than being enlarged, the spleen looked good and the blood flow from the spleen to the liver looked great.

 Steve waiting on his 'splenic' ultrasound.

Steve was bombarded with blood tests today.  They do nightly blood testing @ 4:00 am.  They took 8 vials of blood and a culture bottle (we call it the hot sauce bottle) of blood.  This morning they realized that whoever ran the labs failed to do the liver enzymes, so another poke he got!  They also did more labs and another culture late this afternoon as well as a nasal flush which they will also be testing.

 The "Hot sauce bottle"

The good news is, they "think" whatever is going on is unrelated to the cancer.  The bad news is, we still have no answers.  The melanoma doctor said he believes the enlarged spleen, low platelet count, low white blood cell count, etc are completely unrelated to his extreme back pain.  He believes the back pain is just an issue he needs to discuss with the orthopedic doctor (who should be by tomorrow).  A rheumatologist will also be by tomorrow to rule out any auto immune related issues.  A lot of unknowns, but they are working their tails off trying to figure it out. 

We got to Skype with our kiddos tonight. That was nice!  Miss my babies <3

Monday, November 12, 2012

PET Scan

Not too much went on today.  Steve had a really decent night of sleep.  The doctors made their rounds.  He saw the pain management team, the rounding melanoma team, the infectious disease team and the pharmacy team.  The pain management is doing exactly that, keeping the pain under control.  The melanoma team is managing this whole ordeal.  The whole ordeal that we still have no clue on what is really going on ordeal. The infectious disease team was called in because Steve was running fever last night of 102 something.  The pharmacy team was called to go over all his meds to make sure none of this was a medicinal side effect.

Steve's liver enzymes have been elevated for a week now.  They were high last week when I brought him in to Dr. Kim's office due to his eyes being yellow.  His billirubin was high also then.  The numbers the following day were better, so we assumed his liver enzymes were on the mend.  Well, his liver numbers continue to rise (although the bilirubin is almost back to normal) and they are not sure why.  It could be all of the pain meds, but they don't think they should be as high as they are even with the pain meds.  He also had a liver ultrasound last week that they did not see anything on.  If they continue to be high, they are going to call in a liver specialist.

His platelets are low and continue to drop.  The normal count is around 150.  When we came in on Friday they were 104, then Saturday they were 91 and today they were in the 50's.  They are stumped as to what would cause his platelets to drop when his white blood cell and red blood cells are fine. 

He had a PET scan today.  The PET scan should show them any areas that have cancer cells.  He will have a spinal tap and spine biopsy at some point tomorrow.  It is scheduled for 11am, but when they draw his labs in the night, if his platelets drop below 50 (which if they follow their current trend they will) he will have to get a platelet transfusion before he can have the spinal tap and spine biopsy. 

He has started running fever again tonight.  It is so odd.  He had fever one time last night and now one time tonight.  They are holding Tylenol due to the elevated liver enzymes unless his fever gets over 101.4 (he is currently only 101.3 - yay!!). 

So, that's it for tonight.  I will update again tomorrow.

Sunday, November 11, 2012

Scanxiety.....been there, done that

Today was a pretty decent day for Steve.  The pain management team increased his dilauded through the PCA to every 8 minutes vs every 10 minutes.  It is amazing what those couple of extra minutes will do.  They also increased his Lyrica to 3 times a day. 

Steve dozed on and off most of the day.  Until the Saints came on of course!!!  I layed in bed with him and we watched the game on the IPad since it wasnt on TV in Houston.  It was a BIG win for the Saints against the Atlanta Falcons.  Saints playoff chances still alive!  Yay!!

 Steve getting ready to watch the Saints beat the Falcons

 Steve and I laying in his hospital bed watching the Saints beat the Falcons!!

Steve started running fever late this evening.  It got up to 102.something.  (I was home getting the kids stuff together for school/days so I am not sure on the exact temp, just know it got over 102).  They took a bunch of blood and contacted infection disease department and they are going to get him in tomorrow for a PET scan.  The PET scan will show any areas in his body that have cancerous activity.  We will obviously being close attention to the spine, but will be looking at his entire body.  If the spine lights up, he may have to do a spinal biopsy.  Ouch!  That just sounds painful!  They were able to give him some Tylenol for his fever, and it has broke now.

I am not sure if he is still on for a spinal tap, or if that will be dependent on the PET scan results.  They did tell us to expect to be here at least 3-4 days. 

So, we will wait to hear back the results from the PET scan.  The waiting is always the hardest part, but I think we should know something tomorrow. 

Saturday, November 10, 2012

Pain Management

Steve had another sleepless night.  They had him on 1mg of dilaudid once an hour.  The problem is the dilaudid was not lasting the entire hour.  It was lasting 20-30 minutes MAX and then he flopped around in the bed like a fish in excruciating pain waiting for the next 30 minutes to go by so he could push the pump again.  The nurse was able to give him a bolus dose (extra dose) a few times through the night when things got really bad.  I however slept through most of it.  Shame on me, I know.  But, I was sooooo tired.  I would wake up here and there but was actually able to get some sleep.

In the morning, when the doctors made their rounds, they switched Steve from 1 mg of dilaudid an hour to .3mg every 8 minutes as needed (self administered through the pump).  This almost doubled the hourly dose and he was able to have continuous medication.  This helped TREMENDOUSLY!  He has dozed off here and there but still not gotten much "real" sleep.  At least it isn't due to pain.  It is due to the typical hospital stuff.  Nurses coming in, techs coming in, cleaning people coming in, alarms, etc etc etc.  They gave Steve a stool softener and Miralax to try and prevent constipation from all of the pain medication.  Within 30-45 minutes it made him vomit.  He hates vomiting.  No one loves to vomit, but he realllllly hates to vomit.  It was just that once and he was fine after that. 

The pain management team also came in earlier and added in a regimen of meds for him to take tonight.  He has 3 Lidocaine Patches on (one on his back and 1 on the back side of each thigh).  He also started Zanoflex which will help with muscle spasms.  We don't think he is actually having any, but hey whatever they think will help with pain and let him sleep!  He also is starting Lyrica for nerve pain. When they told him he was starting Lyrica he was in a drugged induced state of mind.  He said "Lyrica?" and started rattling off all of the side effects they list on the tv commercials.  Then he said, "If you mention vaginal mesh I am out of here."  Ha!  He is so funny.

He is snoring LOUD now.  I didn't hear him snore at all last night or all day today, so I know he is finally SLEEPING!  Too bad they have to check his vitals every hour due to all the pain medication.  He also has a nasal cannula to measure his breathing.  He hates that thing!  But overall, I still think tonight will be much, much better for him.

Monday he will have a spinal tap.  They need to find the exact cause of the back pain.  The melanoma doctor doesn't seem to think that it is melanoma, but they have to rule it out.  The will do the tap to check for any cancer cells or infections.  If everything is clear, they will start an epidural with steroids.  He said that most bulging discs will eventually correct themselves.

So, I am not sure how long we will be here and really don't know where we stand on anything.  It's just about managing pain for right now.  We have to wait until Monday when all of the clinic workers come back to work and we get information back from the spinal tap.  

I would like to share an email I received from a friend tonight:


As you saw on facebook, my daughter's 5th birthday was today.  She's already spoiled rotten and has too much stuff, so on the invitations we requested that donations be made to MDAC instead of bringing gifts.  We received a notification that at least one donation was made in our honor, so I thought I'd forward it since it was really in Stevie's honor.  We're thinking about y'all and wishing you well.

There are special people in the world.  Thank you for all you have done for us!

Friday, November 9, 2012

Sooooo sleeeeeepy!

There has been no sleep at our house for several nights.  There will be no sleep at the hospital tonight either.  Needless to say, Steve and I are verrrrry sleepy.  Steve came to the hospital on Tuesday to get some IV fluids/Xray/and Ultrasound because his liver enzymes and bilirubin were high.  Wednesday he had to go into the lab to check his levels.  Luckily there were decreasing so we did not have to go back to the hospital. Wednesday night/Thursday morning, Steve woke me at 2:30 am. He was in excruciating pain.  He tried taking his pain meds, but they were not working.  He could not sleep.  Around the same time, I started having some chest tightness.  I had been having this for a few nights and decided to take myself to the ER. I knew I needed to be checked out, and knew as soon as my family was up and could help with the kids Steve would need to go to the ER.  My Aunt came and got the kids off to daycare.  My other Aunt came to take Steve to the ER , and my mom came to sit with me at the ER.

Once I got to the ER, they did an EKG and said it looked fine but wanted to admit me for observation.  I needed to be checked out thoroughly, but knew Steve needed to go to the ER.  Luckily I have an awesome family and  they all pitched in to help.  Sadie Rae was such an awesome helper.  Steve woke her up and told her I was not feeling well and had to go to the hospital.  He told her he needed help getting Ashlynn ready.  He told me that Sadie didn't ask any questions, walked into Ashlynn's room and woke her up and got her dressed.  Then she took her downstairs and made her a bowl of cereal and then did her hair.  What a great big sister!   (Steve did send me a picture of Ashlynn and said "Is this ok"?  I said , "Can you put different pants on her, those are Halloween leggings."  He says "Picky much?"  I said, "just put some jeans on her."  His response, "Halloween was only a few days ago." 

Ashlynn in her Halloween pants, cause "Halloween was only a few days ago"

At MDA, they gave Steve morphine and fluids for a few hours and were ready to send him home.  Luckily, we were Facetiming when the doctor came in, so I was able to ask the doctor to also write him a prescription for a sleep aid in addition to the new pain med script he was writing.  Steve finished up and met me at the hospital just as I was finishing up.  All of my tests came back fine.  They think the chest tightness could be from stress, a little fluid around my heart, or it could possibly be from an autoimmune disease. 

 Me and Aunt Deb Facetiming
 Blurry pic, we were trying to get me, mom, Steve and Aunt Deb all in one pick while we were both at different hospitals.
 Me and Mom being goofy at the hospital.

Steve and I headed home with high hopes of a peaceful night.  WRONG!  Steve was completely miserable.  He was in more pain than he had ever been in in his life.  He took the new pain med (oxycodone) as directed and the sleeping pill.  It didn't phase him or the pain.  I called the on call Melanoma doctor and asked what we should do.  He said to take the Oxycodone every 3 hours instead of every 8 and see if that helped and if not to come to the ER.

Well, it didnt help.  Steve was still up most of the night.  He did let me sleep a few hours (thank goodness!!)  At 6:30 I was woken up by a phone call from one of Sadie's friends asking me to remind Sadie to bring a note to school stating she could ride the bus home with her.  Suuuuuuuure!  And now that I am up at 6:30, we might as well get started to the ER.  We got the kids off to school and got to the ER.  Steve had the same nurse as yesterday and she said she could tell he was in more pain that yesterday.  They gave him Dilaudid, took blood and did an Xray of his back.  The Xray showed that the back has some issues and that is where the pain is coming from.  Next they did an MRI of his spine and got us admitted into a room (P1011 - my favorite room on the floor - yay!  I call it a corner suite, it is bigger than the other rooms and it has the best view from this floor too!)

Xray report, sorry don't know how to rotate it on here!

The Dr on call (Dr. Papa) made his rounds, but he did not have too much info as the MRI pictures were not all back yet.  So, we still don't know exactly what is going on other than Steve's back is messed up.  They have his pain under control with dilaudid, but it only works for about an hour and he has to ask for more.  Luckily they just changed him to a pump where he can administer himself every hour.  Right now I am listening to him mumble in a half sleep about underground secret worlds and volcanoes.  Guess he feels "good" right now!  Hopefully we will be able to get more information tomorrow.

I was lucky to meet a very sweet friend of mine tonight.  There is a melanoma group on Facebook that I am a member of and I met her through the group.  She is 2 doors down from us.  She is having some rough times but you would never know it.  She is beautiful as can be, has the most positive attitude and is always so inspiring.  I hope to be able to visit with her some more this weekend. 

Sadly, a friend of our family lost her mother to cancer today.  She was here at MD Anderson.  She was battling bladder cancer.  She fought hard.  I am thankful that she passed peacefully with her family surrounding her.  Thinking of you Kathy and all of your family.  RIP - Phyllis

P.S.  These are the random kind of pictures I find on my phone.....Sadie making the duckface!

Wednesday, November 7, 2012

Just ANOTHER bump in the road.....

So, Steve quit taking the Zelboraf over a week ago.  This was a reduced dosage of 3 pills in the am and 3 pills in the pm.  Steve experienced the fevers, the chills, the rash, the pain, the fatigue, the whole nine yards.  The problem is he has been off for over a week and is still having pain and now trouble sleeping due to the pain. 

About 3 days ago, he noticed his urine was beginning to turn a very thick orange color.  This happened while he did biochemo and we knew he probably needed to drink more water. He was drinking lots of water and it was not getting better.  So, yesterday when he woke up (from his 3 hours of sleep) and the whites of his eyes were yellow, I knew something wasn't right. 

I called MDA and was finally able to get in touch with a PA who wanted us to go to MDA Main Campus to have his blood drawn.  We usually go to the Bay Area location for blood because it is so close, but they wanted him to come to the main campus in case he needed fluids and/or needed to be admitted. 

We got to MDA and Steve had his blood drawn and had a chest Xray.  The PA had asked us to call her 45 minutes after he completed the labs.  We went to the Melanoma waiting room to wait out the 45 minutes.  Not only is it FREEZING in the rest of the hospital, I guess it is just our little "comfort zone".  Steve sat and worked and I browsed Facebook (as usual).  After 45 minutes, I called the PA and she said that it was very likely that Steve would be admitted.  His liver enzymes were elevated and his bilirubin extremely high (It was a 7 and normal range is .3-1).  They wanted Steve to have a liver ultrasound and get IV fluids, but luckily he did not have to get admitted. 

Steve had the liver ultrasound and the tech said that she did not see anything (like a tumor!).  So, we were happy about that.  After the ultrasound, we went to the transfusion area and Steve got the IV fluids.  A THREE hour drip! Steve and I started out watching the debate coverage, but he ended up falling asleep since he had not had much sleep the past 2 nights. 

 Watching "The Fight" AKA Election Coverage on CNN

 Two Nights of no sleep caught up to him fast!
 Our "dinner" - hey at least they offered something while we waited 3 hours for the IV fluids to drip!

He had to go to the Bay Area location to repeat labs today.  His PA called me back to let me know that the liver enzymes went down a little and the bilirubin went from 7 to 5.  So, the fluid helped and the numbers are decreasing.  She also confirmed that they did not see anything on the ultrasound.  Steve will repeat labs in 2 days and see how things look.  

I asked the PA today what we will do about treatment?  As of now, he is on nothing to fight the melanoma.  He has scans on the 17th.  She said we would wait and see how his labs look Friday and go from there.  He probably will not be able to take the Zelboraf even on a reduced dosage.  That leaves us with a few options.  A- Beg the doctor to go ahead and waive his "if you have nothing show up in 6 months, you can have surgery to remove the lymph node" and just remove it now, B-Start Yervoy, C-Start a clinical trial at MDA or D-find a hospital with the Anti PD-1 Trial and try to get in to that.  Regardless, we will need to wait and see what the scans look like before we make those decisions.  Obviously if there is any new growth, surgery will not be an option and we will need to figure out which treatment route we want to take.  But, if there is no new growth, I think I will be an advocate for surgery and maybe a clinical trial or Yervoy for maintenance? I will need to do a little more research.  

While we were waiting in the waiting room, we ran into my ex boss, Bill.  Bill has been diagnosed with Merkel Cell Carcinoma.  Bill had surgery to remove the spot above his lip, most of his lip and several lymph nodes in that area.  They surgeons did a FANTASTIC job and you would never even know he had surgery.  One of his lymph nodes came back positive, but the surrounding lymph nodes were clear.  I am not positive, but I think as of surgery he was classified as Stage IIIB.  When we saw him yesterday he was just getting the results back from his PET scan to see if the cancer had spread anywhere in his body, and it had NOT!  So, he is NOT stage 4!  He will undergo radiation and possibly chemo after that to try to prevent a reoccurrence.  Was thankful to hear the news!!

Tuesday, October 30, 2012

Zelboraf 3x3

So, on Wed (the 24th) of last week, Steve restarted the Zelboraf at a lower dose (3 pills in the am and 3 in the pm).  Everything was ticking along just fine until last night.  Steve called me on his way home to tell me he had started feeling bad at work.  He was having chills and was extremely fatigued.  He was so fatigued he wanted me to talk to him on his drive home so that he didn't fall asleep while driving! 

When he got home, I took his temp and it was 101.  I gave him Tylenol and he went directly to bed.  I checked his temp about 2 hours later and it was 101.1.  So, it was not going down with the Tylenol.  Around midnight, before I got in bed, I felt his head and he felt as it his fever had broke.  I did not want to wake him because I did not want him to have difficulties falling back to sleep since it was so late. 

This morning when I woke him, I took his temp.  It was 101 again.  Now he had the severe joint pain like the last go around (not quite as severe as the last go around, but enough where he could barely move his arms/hands and barely get out of bed).  He also has a severe head to toe rash.  I gave him more Tylenol and his fever broke pretty early in the morning.  He worked from home today and got a lot of work accomplished. 
 Rash - Left Arm - Pictures do not do it justice (Yes, I am married to a hairy beast)
Right side of back
 Left side of back

Right arm and side

I spoke with the PA from his doctor's office and she said for him to go ahead and try 2x2 once he gets rid of the fever, pain, rash, etc.  Hopefully he will be able to tolerate the 2x2 and then he can try to go back up to 3x3 at a later date.  If not, we will have to explore other treatment options. 

This evening, the fever is back.  Around 5 Steve started having the chills again.  I took his temp and it was 101.7.  I really needed to rotate and use Motrin, but for some reason I could not find it anywhere.  So, he had to have more Tylenol.  He got up about 8:30 and I warmed his dinner up.  He ate, played with the kiddos and is now watching some TV.  The fever is gone (for now and hopefully for good!) and he is just having the extreme joint pain.  The rash LOOKS horrible, but luckily for him it doesn't actually itch too much.

Hopefully he feels up to our Halloween block party tomorrow night.  I know if he feels like he does tonight he won't :/

Hope everyone has a good night and a Happy Halloween!

Missing my baby brother tonight - Dustin Salas 2/1/83 to 10/31/08 - Love and miss you forever!

Friday, October 26, 2012

Follow Up

Steve had his first follow up visit with his doctor since starting the Zelboraf (and then having to stop due to the severe side effects).  Steve started the Zelboraf on October 2nd and stopped on October 18th due to high fever, severe pain, chills, etc.  After letting the Zelboraf get out of his system he started feeling much better.  He is still dealing with some pain but it is tolerable in short distances with Celebrex and Tramadol.  We got him temporary handicap placards for our vehicles since he can't really walk very far without being in a lot of pain.  He re-started the Zelboraf on October 24th at 3 pills in the am and 3 pills in the pm- aka 3x3 (he was taking 4 in the am and 4 in the pm - aka 4x4).  At the follow up appointment, Dr. Kim said that Steve looked really good.  He recommended that Steve stay on the 3x3 and if his body tolerates the 3x3 well, he may increase the dosage back up to 4x4 to see if his body learns to tolerate the medicine.  And, if not, he will just go back down. 

The lymph node has shrank significantly.  This is great news, because although it is to be expected to shrink significantly with the Zelboraf treatment; we were not sure that the Zelboraf would work on Steve at all.  The mutation that was studied in the clinical trials was the BRAF V600 mutation.  Although Steve has the BRAF mutation, he has a rarer mutation, the BRAF K601 mutation.  This mutation was not studied in the clinical trials.  So, it was definitely worth a shot to give it a try, but we understood that the Zelboraf might not work on his mutation and we would possibly have to go another route if it did not work. 

Steve will follow back up in 2 weeks just to check in with the doctor to be sure his bloodwork comes back ok.  Then he will have new scans 4 weeks after that.  Ugggg, the waiting is killer!  The plan still stands that if Steve has no new tumors in the next 6 months that he will have his lymph node (and likely some surrounding lymph nodes) removed.

Sunday, October 21, 2012

Spoke too soon!!!

Well, I guess we spoke too soon. In Steve's words, "The Zelboraf finally got me". 

Thursday morning Steve woke up feeling a little sluggish, but he had stayed up late the night before working on a project for work and just figured it was from getting a little less sleep than usual.  Late Thursday afternoon, while he was at work he started to feel worse.  Extremely fatigued, chills and feverish.  He walked in the door from work and went straight to bed.  I had grilled some yummy steaks and had dinner on the table.  He did not say one word to anyone.  He just went straight to the bed and immediately fell asleep.  I knew when he skipped dinner he was REALLY not feeling well.  I went in and asked what was wrong and he said his eyes were on fire, he was cold and so tired.  I took his temp and it was 101.8.

I immediately called the melanoma after hours number and had his doctor paged.  While I waited for a return call from the doctor, I turned to my AWESOME Melanoma support group on Facebook.  There are people there with all stages of melanoma, caregivers, families that have lost loved ones, etc.  These people have been there done that.  It was a general consensus that I should take Steve to the ER.  When I woke Steve up to tell him that we should go to the ER, he refused.  He said the nap made him feel better.  He got up and ate his dinner and watched some TV.  I monitored his fever.  It yo-yo'ed up and down.  After a couple of calls to MD Anderson, I finally got the on call doctor to call me back (they were originally paging his doctor who was out of town and not the on call doctor).  The on call doctor said that we should treat the fever and that since it was a known side effect of Zelboraf to stop the Zelboraf for now and treat the fever.  So, that is what we did Thursday night.

Friday morning was our community garage sale.  I already had everything set up, so I decided to go ahead and open up.  It was actually very slow this time around so I was able to run in and out to check on Steve.  He was actually doing pretty good.  He had very low grade fever, not as much pain and seemed to be feeling better overall.  He was up out of bed and working from his laptop. We thought the worse of everything had passed. I spent the rest of the day shopping with my mom.  I called to check on him every hour or so and he was feeling ok, just sore. He was checking his temp and it was down the entire day.  Just as mom and I were turning down my street on our way home from shopping, he called to say he was feeling bad again.  We made it through the evening managing his temp with motrin and Tylenol.

Saturday he still had fever and was in a TON of pain.  I finally convinced him that he should go to the ER.  Even though these are known side effects of Zelboraf, it was a good idea to check his blood and urine to be sure there were no infections and to be sure that his counts were all ok.  Mom came and got the kids and Steve and I got to the ER at MDA about 2 pm.  At this point, Steve could barely walk without assistance.  They wheeled him to an ER room within 5 minutes.  They got him hooked up to some fluids, got a blood draw and gave him some morphine for his pain.  The morphine knocked him out and he sleep for hours.  When he woke up they got a urine sample and ran that.  They also gave him more morphine.  Even though they were giving him Tylenol, his temp was still up to 103.  The ER doctor wanted to admit him, but once the ER doctor spoke with the on call Melanoma doctor, he said that we could go home and treat the pain and fever from home.  Steve was happy about this because he didnt have to miss the Saints (win!) today.  Everything came back fine with his blood and urine.  His platelets are a little low, but not low enough for a transfusion and not enough to be too worried.  We came home around 9 pm.  7 hours at the ER, but Steve got a little relief from his pain, we confirmed that it was only side effects from the Zelboraf causing all of this, and he was able to get some much needed rest.

Today Steve has not ran any fever but is still having a lot of pain.  He can barely walk.  He made himself shower and try and walk and stretch his joints some earlier this morning.  Other than that he has been sitting most of the day due to the bad joint and foot pain. 

Needless to say, it has been an eventful weekend!  I want everyone to know that these are expected side effects of this medication.  Steve is not having any sort of complications of his melanoma.  He is not suddenly doing bad or going downhill.  This is all from the meds.  Typically the fever, rash and joint pain hits most patients about 7-10 days after starting the medication.  Steve lasted about 16 days on the full dose before it hit.  So, we can be thankful that he got 16 days of the FULL dose (4 pills in the am and 4 pills in the pm) in his body.  Now, he will be off of the medication for 5-7 days while he recuperates from these side effects.  After that, he will go back on the same medication at a lower dose.  Either 2 pills in the am and 2 in the pm and then gradually up to 3 and 3, or they may try to take him straight to 3 and 3.  We have to follow up with his doctor tomorrow. 

Thank you to EVERYONE for your messages, texts, prayers, etc.  We appreciate every one of them. 

Special thanks to:

My mom for keeping the kiddos - love you so much!

Judy Sager for offering to watch my kiddos and/or come to the hospital to sit with me. - You are an angel!!

Josh Posey for offering to come to sit at the hospital with us. - Love you guys so much.  Thanks for always offering to help in any way you can.  You are the most giving people I know.

Brian Rose for your message, it means a lot to me and Steve.  He feels so much better when he hears from someone that has been there done that, and he really looks up to you.  You give not only us, but so many people hope and inspiration.

All of the BAMW's for being there for me and talking me through everything.  You rock :)