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 :)

1 comment:

  1. Dear Jennifer,

    My name is Dianna and I'm from a healthcare-focused organization currently working on a research project that's looking to improve care for metastatic melanoma patients. I've been reading many of the patient blogs the past few days and am deeply touched by how courageous and positive they all are in their fight against this terrible disease including your husband Steve. As a part of our research, we are looking for direct feedback from patients regarding their treatment and overall journey with melanoma. It would be really helpful if Steve could share some of his personal perspectives and experience with melanoma. To give you a little more information about the objectives of our project, we are first and foremost looking to speak directly with actual patients such as yourself in order to understand first-hand what you feel are the unmet needs in the treatment of metastatic melanoma. We hope to be able to utilize this feedback to help develop tangible resources including educational materials, institutional support, and other similar support tools that will improve the overall quality of life and benefit all patients as they fight and cope with melanoma.

    Please share this request with Steve and let me know if he is interested in speaking with us (would be over telephone), and if he is, what is the best way to contact you guys (email or phone) and I can provide you with additional details regarding our research. If either you or he is not yet ready to share that story, I’d definitely understand and wish you and your family all the best.

    I will also be posting this in other similar blogs, but if you know of other melanoma patients that would be willing to help us with this important research, please feel free to provide some contact information and I will reach out the them.

    Thank you and god bless.