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 :)

Tuesday, October 16, 2012

Zelboraf Week 2

Today marks 2 weeks that Steve has been on the Zelboraf.  He is still on the full dosage (4 pills in the am and 4 in the pm) and is doing really well and is having minimal side effects.  The side effects he is currently experiencing is minimal joint pain, extreme foot pain (bottom of the foot on the pad), fatigue, anxiety and last night he had trouble sleeping (which we are hoping is just an isolated event).  The lymph node continues to shrink although the shrinking has slowed down.  This is to be expected.  This drug works VERY quickly to attack your tumors and then slows down.  However, just because it slows down DOES NOT mean that it is no longer working. 

Steve has still been going to work everyday and working all day.  He wears a hoodie on the way to work to be sure he protects his neck and arms from the sun on his drive to work.  (He also wears facial sunscreen and SPF chapstick).  The Zelboraf causes extreme sun sensitivity.

Sadie's birthday is today, but we had her birthday party this past weekend at a local skating rink.  No, Steve didn't skate, haha!  But, he did come to the party, take photos, run around keeping an eye on Ashlynn, etc.  So, for the most part, the Zelboraf (as of yet) has not disrupted our lives too much.

Yesterday we received a letter from our insurance company letting us know that we could no longer fill the prescription for Zelboraf through MD Anderson (or any other pharmacy for that matter) and that we would have to fill the prescription through a specialty pharmacy.  We spent several hours trying to get this set up last night.  The pharmacy ended up closing before we could get it completed.  I did however get on the phones bright and early this morning and get it all squared away.  They got Steve in their system, I called and spoke with Urvi (Dr. Kim's awesome PA) and she faxed over the prescription.  I logged on to the pharmacy website a few minutes ago and it shows that they have received the prescription and have already mailed it out.  We also have a ZERO copay for the Zelboraf.  So, everything ended well there.

I will update again next week.  Have a good week everyone!

Steve and his baby girls <3
 Daddy and the birthday girl <3

Our family <3

Tuesday, October 9, 2012

Zelboraf Week 1 - Complete

Well, week one of Steve's Zelboraf treatment is complete.  We can't speak too soon, but week one overall wasn't "too" bad.  A lot of people that take Zelboraf break out in a head to toe rash (he is only on day 7, so I guess there is still time), but so far he has had very little change in his skin. He experienced a bit of nausea one day this week.  It was short lived and passed quickly though.  The toughest part so far has been the fatigue, extreme joint pain, and severe pain on the bottoms of his feet.

I called one of the PA's today about the joint pain and she called him in a prescription for Celberex.  After reading the side effects from the Celberex, Steve is not quite sure he wants to start it.  It has some really scary heart attack side effects.  I have read of many people taking Zelboraf that also take the Celebrex with no problem.  It seems those at higher risk for heart attacks are those with heart issues.  One of the protocols before starting Zelboraf is to check your heart.  So, I think he would be safe to take it and the PA said that that is their first choice in treatment of the joint pain.  I guess it just makes Steve a bit nervous.  He said he will just wait and see if his joint pain gets worse and if so then he will take it, but for now he will just deal with it.  (Ok, Mr. Tough Guy!!)

So far Steve has been able to keep on the 4 pills in the morning and 4 pills in the evening regimen (which is the full dosage).  Sometimes if a rash, or side effects, etc get too bad, the doctors will lower the dosage either temporarily or permanently.  Again, it is too early to tell if he will be able to tolerate the full dosage the entire time, but so far so good!

Keep in mind that Steve's last CAT scan did not show any tumors in his abdomen.  He started this Zelboraf due to the lymph node (that tested positive for melanoma) was enlarging.  I am happy to report that after 1 week on the Zelboraf the lymph node has decreased in size by at least 50%.  This is not uncommon, but is still exciting.  Zelboraf works very quickly, but sometimes only works a short period of time.  But that is exactly what we needed.....a little time.  Hopefully, the Zelboraf will completely get rid of the melanoma in the lymph node, but if it does not get rid of it 100%, as long as no new tumors appear then he will be able to have that lymph node removed in about 6 months.

Steve <3 

On a side note, I want to congratulate and thank Chelsea Price (you can check out her blog here: Chelsea Price - Adventures With My Enemy Melanoma ).  Chelsea was invited by The Skin Cancer Foundation to come to New York and share her story at The Skin Cancer Foundation Gala to raise money for skin cancer awareness.  Chelsea is speaking in honor of those we have lost, those that are fighting, and for awareness for everyone.  I am extremely proud of you, Chelsea!!!
 Chelsea looking beautiful!
 Chelsea looking stunning on the Red Carpet!

Monday, October 1, 2012

Tomorrow is the new "Big Day"

When you have cancer, there are lots of "big days"......first doctor appointment, biospy results, CAT scan results, MRI results, PET scan results, treatment days, etc.  Well, tomorrow is another big day.  Steve starts a new treatment tomorrow....Zelboraf.  Zelboraf is an oral targeted therapy medication.  This medication is only used in those with the BRAF mutation.  You can read more about Zelboraf here http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0041057/

Steve and I are both anxious about this new treatment.  We are anxious to see if it works, but we are anxious waiting to see how the side effects are.  Side effects are different for everyone, but the biggest side effects of this medicine is severe joint pain, hair loss, fatigue, severe sun sensitivity (like literally fry within a few minutes in the sunlight), skin rashes, and it can cause a different type of skin cancer (geez).  Steve is back to work full time and is going to try and work full time through this treatment.  The side effects should be manageable (we hope!!).  I hope he is not too uncomfortable. I feel so helpless when he is not comfortable. 

In one way, this should be a walk in the park compared to the side effects from biochemo, but again he was not working during biochemo (except from home) and now he will be working in the office while dealing with these side effects and it scares me.  It kills me to know he will be sitting at work and possibly suffering miserably.

These are all "what if's".  We know for sure he will have some or most of these side effects, but the severity varies from person to person and also depending on dosage.  To start he will be on the maximum dosage 4 pills in the am and 4 pills in the pm.  I have not yet read any person staying on that dosage.  It is such a strong drug, that everyone ends up having to lower their dosage.  I guess the next few days/weeks will give us a better idea on what he can expect.