Good news shared by Danny on FB tonight. LDH is a blood test that is pretty non-specific, but is used to monitor organ damage by my doctor. Mine has been crazy high before and has been steadily going down. Here is a link for more info if you are interested.
OH: “I’m almost normal, babe!”… makes you laugh, but then you realize your wife is talking about her LDH level from blood tests earlier this week.
Then you tear up
and pray heaps of prayers
Surgical drain out yesterday, I am a new woman! Blog post in the works, but the surgery has made a huge change in my pain levels and energy levels. HUGE! I have treatment #8 of Anti-Pd1 tomorrow. Yay! Still so excited to be on the trial. A couple prayer requests, I’ve had a sore throat for a couple days. Pretty minor, but I don’t want my immune system “distracted.” I also will be having scans prior to dose 9 to see if my disease is stable enough or hopefully shrinking so I can stay in the study! Please pray for lots and lots of shrinkage! We are hopeful that with my new reduced tumor burden (due to the surgery) my immune system will be able to use the anti-pd1 to even better advantage in fighting the disease left in my body.
Thanks again for the incredible support and prayers!
I have been doing great since my surgery, but I wanted to post a request for prayer for one of my melanoma friends, Amy. Amy named my tumor that I just had removed for me (it’s name was Beelzebub.) Amy has a scary tumor of her own named Roscoe. Roscoe is in Amy’s heart! Boo hiss! Amy is on the same anti-pd1 trial I am on, but is having her treatment paused because she is having major blood count issues and they are having trouble finding a reason. Would you be willing to pray for this sweet woman who checks on me even as she wages her own battle? Pray for wisdom for her doctors and that she can get back onto her treatment. Anti-pd1 was working to beat back Roscoe and I want her to get her next dose! You can read more about Amy’s journey on her blog.http://nashvegasmom.wordpress.com/
Forgive the cross posting, please! I attended Parent Information Night tonight. My kiddos have fabulous teachers this year! I am excited for the possibilities the new year brings! It was SO good to be out of the house for a bit.
I am feeling good. My pain level post surgery is much lower than my tumor pain was pre surgery. Hoping that without the tumors, my immune system will be able to focus on reducing some of the tumors in my lungs and my armpit!
: Thanks for all the prayers! This morning’s gone really smoothly. I’m surprisingly calm – can only be God’s peace. Mar’s been in a great mood and was making her surgeon laugh for a while before they took her into the OR.
It’s a good day. And she’s gonna finish it two tumors lighter!
Much later update from Martha: I was really nervous about coping with surgery pain while I was already on a pain management plan with a palliative care doctor. I actually woke up from surgery OUT of pain for the first time in a LONG time. Recovery was easy! Getting those tumors out was amazing for my quality of life. Almost NO pain from the time of the surgery! Amazing amazing difference in my quality of life! Yay!
My surgery is scheduled for 9:30 tomorrow. I am thankful for an early morning time, but with a report time that lets us get the kiddos off to school in the morning!
This is fairly horrible videography, but it gets the point across, I hope! The glare makes it seem brighter outside than it really was, but it was truly overcast. Oh, and I didn’t really get my shoes, so you’ll have to take my word for it that they are cute indeed! This is less than 2 minutes, so give it a watch!
About a week ago, I wrote a post called It was a good ride Lambrolizumab about my scans not showing the results I needed to stay in my Anti-PD1 trial. This was based on my oncologist’s once over of my CT scans and although he told me he still needed to do the math, I had most likely reached “the end of this road.” Danny picked up a copy of the official scan report the next day. (Thank you again Darling for dealing with the hassle of that process!) As I poured over the report with my pen, pencil and two highlighters, my scan results were much better than I had expected to see! I had mostly stable tumors (no growth or shrinkage.) A couple tumors that had shrunk a small amount. Horray! And one tumor that had shown quite a bit of growth (this is what caused my oncologist to come to the conclusion that I was done with the study.) I was pleased with the results overall and sad to be done with this trial into which had seemed to work at first and given us great hope.
Today I met with my surgeon about removing my painful surface tumors. One which I had hoped would be removed is too complicated to remove without concerns about long term complications in my leg, but the large tumor on top of it WILL be removed as well as one on my back. We went over the surgery consent with my surgeon’s intern. He needs practice…. ‘nuf said. 🙂 I was teary on and off during my appointment, primarialy because it was clear the surgeon wasn’t ready to discuss my long term plans other than surgery and I was frustrated that I hadn’t heard from my oncologist about discussing my next treatment or trial options. Danny finally helped me find my voice enough to request we speak with my oncologist’s nurse. As soon as she heard I was teary and worried about not knowing what was going on, she put the pieces of the puzzle together to realize their had been a bit of a communication failure. She made some calls to confirm prior to seeing us and then came to let us know that….
I STILL AM A PART OF THE ANTI-PD1 TRIAL!!!
My tears almost immediately changed from worried to elated as I raised my hands in the air celebrating this fabulous news! She let us know that with tumor growth, you can’t have beyond 20% growth in the “targeted tumors” that are being measured for the study. I had only 17% growth, so I am eligible to get two more doses of my drug and then they will repeat the scans and re-determine if I will stay in the study or not. I still will have the surgery to remove my painful tumors, so I feel as if today was a double win! The surgery has to be approved by the drug company who is running the trial, but the nurse we spoke with today was pretty sure my trial nurse had already gotten that approval. (She is on vacation this week, which is part of the reason for the communication breakdown.)
Thank you for everyone who prayed for us today! This news feels miraculous to me and I am so thankful to God for the hope this gives us! Now our specific prayer request is that my tumors would all begin to shrink and these next scans would show vast improvement! We will update with dates for surgery and the like once we have them. Next week may be a busy week. The kids begin school Monday, I get infusion #7 of anti-pd1 on Wednesday the 7th (I am still giddy that I can write that!) and my surgery will probably be on Friday the 9th! Whew!