Seizures and braining swelling and lumbar punctures, oh my! The fun continues with my brain symptoms. I am taking a seizure medicine just in case and am waiting to be seen by a neurologist in October to determine my seizure and driving status. I haven’t had any communication issues like the original episode. Some aphasia once in awhile (not being able to identify a specific word) but that is an ongoing issue more related to stress and my own getting ahead of myself, I believe. I did suffer a few severe headaches this week and my right eye continues to bug me. I’ve decided the best description is that it feels as if someone is constantly waking their hand in front of my eye. I can see through it, but it is distracting and can feel “shadowy” at times (when I get tired,especially.) My vision was great today until about 8pm. Not too bad. I also have a little trouble identifying specific letters at the ends of words I’ve typed. THAT is strange! So forgive any typos, proofreading is tricky! I did call my Radiation Oncologist this week about the continuing symptoms. Originally he was going to put me right back on steroids, but we know my melanoma oncologist wouldn’t like that because steroids lower immune response and we’ve got a good one going at the moment. (Which may be why I am having all these brain issues.) So both oncologists put their heads together and ordered a lumbar puncture (aka spinal tap) for me because my MRI didn’t show enough swelling to indicate the severity of symptoms I am having (my best guess about this is that my MRI was on Sept 3 and isn’t up to date enough to show the current swelling, but getting an MRI is tough unless you go to the ER,) my oncologists thing I may be having long term side effects based on a drug I took in early 2012 called Yervoy. Yesterday I found out at 9:30 that I needed to be at UAMC for my lumbar puncture at 10:45 (Danny was at work and I can’t drive.) We made it, by the skin of our teeth, both a bit upset about the lack of notice- I called them! A good friend covered the kids and I was too mad about the communication lapse to get very nervous! The lumbar puncture wasn’t too awful. Very odd and not comfortable, but not painful. They took 10ML of fluid and sent us home. I was on bedrest for 24 hours to avoid a spinal headache and that brought is to today! Danny has been incredible, as usual. The kids were especially wonderful the day they came home to a Mom who shushed them incessantly because of her headache. It’s been a rough week, but we hope next week brings answers. Thank you for the continued prayers and support. There are lots of side effects right now, but Danny and I have a lot of peace that they are more of a pain in the rear to deal with than dangerous. My oncologists have given us the same impression. I have a few friends dealing with VERY similar circumstances and drugs right now so we take comfort in comparing notes and theorizing and I am SO thankful to live in the internet age.
Really rough day. I am doing better tonight and figured I’d better send an update while my head doesn’t hurt and vision is working. I finished up the steroids (I was on a 6 day reducing dose of prednisone) and my vision and headaches had greatly improved. But Tuesday night I became symptomatic again and had the worst headache of my life.This thing trumped any migraine I’ve ever struggled with. I got some sleep but the headache hung on until about 7pm on Wednesday. I did get my radiation oncologist called. He spoke with my melanoma oncologist and they both feel my symptoms are worse than the swelling on the MRI (On Sept 3) warranted. So, they want me to have a lumbar puncture (aka spinal tap) to check that it is not a long term side effect of Ipi, a treatment I took in the spring of 2012, but can have long term side effects. I am waiting on a call to schedule that. The headache returned with a vengance today. Along with crazy emotional side effects.
It is with a joyful heart and thanks to God I share that my scan results were wonderful! Three of my tumors are stable in size and four are SHRINKING! The one remaining shrunk in length, but grew a small amount in width. Nothing indicates it won’t be shrinking all around by my next scans. Also, a blood marker which indicates tumor activity continues to drop and is now in the normal range.
My brain symptoms continue to improve and we have a lot of peace that they will resolve without giving me more trouble. I also followed up with my surgeon today because my wound on my back from surgery 6 weeks ago has sprung a leak! He is not concerned and though it may take longer than normal for the spot to heal because the area was irradiated in 2011, it is healing well and having the fluid buildup behind the wound removed will encourage healing.
We are so excited and encouraged. It has been quite the journey over the past 4 years! Thank you SO much for in prayers and support we will never be able to begin to repay. We would still love for you to join us for the Melanoma Walk on November 2! You can sign up to join Team Melanomas by clicking the link below.
Praise God for hope, prayer and anti-pd1!
The 411 from the past two weeks. Tuesday two weeks ago, I was shopping and began seeing “mirages” very similar to what I saw before my brain tumors were diagnosed in January. These lasted a long time and I ended up ditching my cart and having Danny come rescue me and we headed to the ER.
After a long wait and MRI, the MRI didn’t show any new tumors, but some swelling of the sites I had treated in January. This apparently is common with dying brain tumors, the brain isn’t very good at dealing with necrotic tissue.
I didn’t have any symptoms for the next 13 days until we were at Costco with the family on Sunday evening and the vision changes came back. It ended up getting worse and I had some difficulty communicating.
Got through the night (after a period of lucidity and convincing Danny I was ok for the night.) Woke up with the same symptoms plus a horrible headache and we decided it was time to call the doctor. They sent us to the ER with a promise that my doctor would meet us there. Sadly over the course of 6 hours in the ER waiting room, we moved from priority 3 to priority 8! (Still in the waiting room and the exam rooms were all full. We would have had to wait for 8 people to be discharged!)
We called the doctor who had planned to meet us begging for mercy and he agreed to send us home and call in a prescription for a steroid to reduce the swelling. I’m still not sure exactly why he sent me to the ER. I know it was my best chance to get an MRI, but he was confident as to what was going on based on the previous MRI. Originally, we thought I was having ocular migraines, but my radiation oncologist (the top guy in Tucson) told us this is NOT the issue, it is the necrotic tissue causing irritation and swelling in my brain. Oh the fun!
Tomorrow I see the radiation oncologist for a follow up. Thursday I am scheduled to have dose 9 of anti-pd1. I had a CT scan of my body today and we are praying and hoping for positive results showing less disease in my body so I can continue confidently on the trial. We are also praying the steroid does the trick and I will not need it long term.
Often drug trials don’t want patients on steroids, we are hopeful this won’t get me kicked out of my current trial. Steroids also suppress the immune system, and we want the opposite so my body can fight any cancer, so please pray that they work well and thoroughly and I can get off them quickly!
Hopefully this makes sense. We have a LOT going on and appreciate prayers. In praises, Danny has been incredible and his boss and company have given us 100% support giving Danny the week off to focus on taking care of me. We are so thankful. The kids have been a little worried but seem to be doing ok and are excited for special events at school this week. We will try to update on Thursday when we know what is going on.
I was up all night with an ocular migraine (we hope.) My brain doctor is going to meet us in the ER at UMC. Please pray it’s nothing and I can get fast relief. This is a pain like no other.Thankfully I see the head of the dept. Pray for Danny too as I am mostly out of commission communication wise. Last night there was a point I couldn’t respond to him orally. A migraine is much preferable to a brain tumor and I seem to have ALL the symptoms for a bad ocular migraine. Brain tumors don’t hurt, though. Oww!
Bragging… life is SO much easier and pleasant when you aren’t in constant pain! Today I got 3 loads of laundry folded, actively did homework with the kids, took an awesome nap, held a “service” and buried a pet fish with a child, brought in the trash can, took trash out and am making dinner for the 3rd night in a row!!! I know it doesn’t sound like a lot, but it is huge for me. Praise God for this new quality of life!!! Scans next week and praying I can continue on Anti-pd1 and keep enjoying life for awhile.
From emails to our prayer group.
This was the beginning of an auto-immune reaction which my oncologist believes Yervoy, a treatment I finished mid 2012 triggered in my stable brain tumor. It caused swelling around a dead tumor in my brain.
Sept 3- Hey all. I am at sprouts. Danny is on his way to get me. I am having flashing lights in my vision terribly. This is the same symptom I had with the brain tumors before. This time it’s much worse. Waiting on a call to see if I need to go to the er. Please pray it’s simple inflammation and not new tumors and that it will go away! We are abandoning a car at sprouts. Danny might need help getting it later. Thanks all. I feel fine, my vision is just incredibly impaired and I’m scared about what this might mean.
We are picking up the kids right now and taking them to Grammie’s school. Then heading to UMC’s ER for an MRI to see what is going on.
Sept 5- Another reason for celebration tonight. I saw an ophthalmologist today and my eyes are fine. There was some suspicion that my symptoms were caused by uvitius, a side effect of immune disorders (which my past and present treatments can emulate.) Thankfully my diagnosis was ocular migraine without pain and there is no reason to follow up at this point. It was quite a scary experience because it was so similar to my brain tumor symptoms, but we are thankful for a clear MRI and eye exam! Oh, and a clear skin check from my favorite TWO dermatologists today!
If only this was really the end of that journey…