Archives: Anti-pd1

One year ago today

One year ago today, on January 23, 2013, Danny took me for an MRI which we thought was going to be a breeze. I needed it to qualify for a new clinical trial testing Merck’s Anti-pd1 drug which was showing VERY promising results. I was set to be the first patient at my cancer center on this trial. Emotionally, we were feeling very positive at the possibilities offered with this new trial although we were a bit nervous about ending up in the chemo arm of the trial. I felt good after the MRI, so my sweet husband took me to Jerry Bob’s for breakfast.

One year ago today, just as we were finishing eating, my cell phone rang and it was my trial nurse coordinator asking if we were free to come in to sign some paperwork she had just figured out we needed to fill out. (Liar, liar, pants on fire! We won’t fall for that trick again!)

One year ago today we were ushered into an education room where my nurse practioner (my oncologist was out of town this day), trial nurse and oncologist’s nurse sat us down to tell us the MRI had shown two tumors in my brain. I needed to treat these and would not be eligible to begin the trial.

One year ago today I had a meeting that afternoon with Dr. Stea, the head of radiation oncology at UAMC to plan the Steriotactic Radiosurgery I would have within the week which would use seemingly Star Trek lasers to kill my tumors from the inside out with just one treatment.  We also planned for me to also began two chemotherapies (oral Temedor and Avastin) the very next day.

One year ago plus a few days, I responded beautifully to the treatments and got into the trial I originally hoped for just a few months later than we planned. And although my immune system attacked the dead tissue in my brain this September and 2013 seemed to be the year of brain trouble, I have not had any new tumors, brain or body, since January 23, 2013! One Whole Year!  The anti-pd1 trial has stabalized and is shrinking my tumors. I have been on this treatment longer than any other I’ve attempted (excluding the year long interferon treatment I did when first diagnosed.) We have so much hope that this stability will continue.

One year ago today was probably the scariest day of my melanoma journey so far. And although the emotions of this journey continue to be a roller coaster, I am a walking miracle today with stable disease. God has been good to us. God would still be good if I had died 6 months  or even 3 years ago. He would still carry our family; but we are very thankful for our sweet family of four being able to hike this weekend and enjoy the beautiful 80 degree Tucson weather in January! Thank you for those who have stood with us in prayer and friendship.

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Everyone hates steroids

“Everyone hates steroids and you just have to tough them out.” seems to be the theme I hear from doctors and other patients these days. Perhaps I have been whining too much! Oops!

Today was my every 3 week appointment for my clinical trial. I started by being called back to have labs drawn within 2 minutes of checking in! This NEVER happens! I have a port-a-cath in my chest into which they put a needle to draw labs and give me IV treatments. The needle stays in for my appointment and I have it removed after I am finished with all my appointments and treatments for the day. It saves my arm veins from multiple sticks as well as prevents damage and pain to my veins with some of the tougher medications. So, I see a RN rather than a phlebotomist for labs which takes some time with steralization of the site, removing the numbing cream, figuring out which of the two ports is being accessed (my port is a dual lumen and both sections need to be regularly flushed.) And… I had a point to talking about my lab visit today, but I seriously can’t remember it now. See? Steroids suck. Oh well, here’s a photo of a port-a-cath to go along with my pointless rambling. 

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Next I was seen at the cancer center today by Lois, the wonder NP. I really like her. She is smart, kind, practical and didn’t palpatate my swollen belly out of mercy! I alternate seeing her and my oncologist. Lois watches me medically, but she also is a great help with helping me have the best quality of life possible. I have gained a significant amount of water weight (10lbs) in the past two weeks, plus an additional 15 lbs added from the two months I’ve had a ravenous appetite. Thanks for that, steroids! I think Lois knew palpitating my belly was a bad idea when she saw I had pulled out the ol’ pregnancy “rubber band the pants instead of buttoning them closed” trick for the day! Keeping it real here, folks!

The great news I got today from Lois is that over the next 10 days, I am changing to a lower dose steroid (I’ve been on Dexamethasone and am switching to Prednisone.) AND reducing my dosage until I am finished with steroids entirely!

I have not been allowed to take Anti-pd1 (the clinical trial drug that has been WORKING!) since the brain symptoms began in September and I have been on the steroid. The anti-pd1 revs up my immune system and the steroids work to calm it down, so they are counter-indicated. We WANT my immune system working on my tumors, just not going crazy on dead tissue in my brain. (insert joke about dead brain tissue and intellect here.) Assuming all goes well with weaning off the steroids, I should be able to have my 9th infusion of anti-pd1 on December 2nd! I am SO excited to get back on track with the trial and kicking melanoma’s ass! SO SO SO happy to have this plan in place and a light at the end of this brain mess tunnel!

Another example of my absent mindedness of late at the end of my appointment, it wasn’t until I got into the car and felt the port still accessed when I put on my seatbest that I realized I’d left the cancer center without returning to the lab to have the needle removed! Thankfully we hadn’t left the parking lot! Things like this have been happening a lot. I  had a friend remind me I’d left a Facebook conversation mid-chat a few days ago and completely forgotten about it among other silly mistakes due to not being able to think super clearly. I cried this morning because I couldn’t find a medication and my bra. I am tired of being absent minded! SO, if I have not responded to something I should have or forgotten to do something or forgotten your last name at the melanoma walk, PLEASE forgive me. It is not because I don’t care. My brain just seems to have fallen out. If you see it, send it home!

All in all it was a really good appointment and day. Steroids suck, but I can see a finish line!!!

A couple prayer requests if God leads you to pray for me.

First, that my brain and body will cooperate with the steroid wean. Steroids are tough on the body and I’ve been on a fairly high dose for a good amount of time. Of course, I am hoping to get off these darn things ASAP, so prayers for a smooth transition are SO appeciated.

Second, that the Anti PD1 will kick back in and continue to work to reduce my existing tumors and prevent any new ones! I have seen some signs as the steroid had been reduced that the Anti-pd1 may already be kicking back in which would be incredible and not unlikely based on how it seems to work in other patients. Yay for Anti-pd1!

Third, that this brain swelling stuff will NOT return! We need my immune system working hard from my neck down on tumors in my body, but my brain needs to stay calm, remaining tumor free is good, but attacking tumors that are already dead and attacking with a vengance is something we’d like to avoid!

Fourth, that God would provide an excellent melanoma specialist for my cancer center. My oncologist is overworked and needs help! I’ve heard rumors they may be hiring someone soon so please pray for the perfect person to treat the many Arizonans who face melanoma and are treated at AZCC.

Phenomonal Halloween

Thursday, October 31 was a wonderful, lengthy appointment with my oncologist. We discussed a LOT of things but what stuck out the most, and then my trial nurse repeated after he left was that I am currently  “phenomenal.” This is somewhat paraphrases, but essentially my oncologist told me, “Two years ago, things weren’t looking too good for you and the median life expectancy at that point is 7 months (thankfully he didn’t mention that then!) but today you are doing phenomenally and I expect you to be my patient for a long long time.”
The next focus and goal for my treatment is continuing to step down the steroids and get back to infusions of the trial drug toward the end of November. In the meantime, I skipped a second infusion #10 because the trial drug would ramp up my immune system and the purpose of the steroid treatment is to calm down my immune overreaction in my brain (see auto immune meningitis post.) We also discussed a variety of options I have if I cannot successfully get off the steroid and have to leave the trial, but for now things look really great that I will be off steroids and back on anti-pd1 at the end of November. Happy birthday to me! I am honestly SO excited to get back to it! I was the first appointment of the day and it felt great to walk out of that building with good news.
Danny and I then had a lunch date and went paint color choosing for the outside of the house. I think we’ve decided so now we just need to write the check. Ugh! Our little house is going to look so nice, though!
I am in a wonderful group on Facebook made up of moms from the kids’ school. There was discussion about when the annual costume parade would be so I asked if someone would be willing to cheer as my kids passed and snap some photos because I knew I’d be at this appointment and miss. The kids came home full of excitement and both mentioned that a couple of the moms took pictures of them. I think they felt like celebrities! So sweet and such a blessing for my heart to know my kids were loved on after both expressed disappointment that I couldn’t attend their class parties. It’s tough to ask things like this sometimes because I worry that I might come across a) as an attention whore who is bringing up the cancer thing AGAIN or b) the conversation killer who is bringing up cancer again ruins the conversation about the times of parties and parades. I don’t mean to do either and my hope is that my friends know me well enough to keep moving in conversation and planning (while also doing what bossy pants me requested, of course!)

Danny and the kids carved pumpkins that night and went trick or treating. I was pretty tired and ended up having a focal seizure. I wasn’t on a therapeutic dose of anti-seizure meds, so I knew this wa s a risk. I was reading and all of the sudden the words turned to greek letters. I had no idea what they said. I was aware enough to call Danny over and verbally describe to him what was happening. It was odd but intriguing. Put a bit of a damper on the Halloween celebrations, but I think I will just up my seizure meds to a therapeutic dose and be fine. Call in to my neurologist and waiting for a call back.

October 10, 11 and 15th updates to FB

Update on Thursday and Friday’s appointments from last week. Great news. Along with an incredible sense of peace from God brought overnight on Wed- Thursday morning went very well. My spinal tap numbers are much better! White count norm is 0. It was 37 for first test and 11 on Monday (10 days apart)! I did not get my infusion because I am on the steroid, but I am still in the trial and have 12 weeks to get off the steroid. I should be able to get the next scheduled infusion on Halloween. I saw a neurologist Friday and will probably be on an anti-seizure med forever but because I was aware the entire episode, I can still drive! We are going to try some different anti-seizure meds to help me wake up a bit and avoid the depression. I also got orders for how to step down my steroid over the next month beginning on Saturday. For such a rough week of many unhappy appointments it was a remarkable one. Danny has been beyond incredible. Good news friends. Good news.  I have an MRI and followup with my radiation oncologist (brain guy) next week, and then maybe a break until Halloween! We can only hope!

And from my “normal page” Monday the 19th:
I worked harder than I have in ages today. Many loads of laundry dealt with, FOUR stores stopped at, including a less than $100 Costco trip, dinner prepped, active homework with the kiddos and played Outburst Jr with the family after dinner. I also have an appetite that I could unhinge my jaw and eat a chicken whole, but don’t think my caloric needs are quite that extensive yet. The steroids are talking! (Oddly enough, I am on day 3 of the lower steroid dose!) Must be the steroid in combination with actually sleeping last night. Here is to being able to stay still in the MRI tomorrow! Yikes!

October 6th Prayer Request

Couple prayer requests to throw out if anyone wants them. I am improving on the steroids. No more headaches or strobe lights in my right eye! Yay! The worst part now is dealing with side effects from meds. The seizure med makes me low and the steroid makes me high! So… I’m not sleeping much.  Tomorrow I am having a follow up lumbar puncture to make sure the meds are working, although based on side effects, it is fairly clear to me that they are clearing things up! Not very excited about the lumbar puncture, but it wasn’t awful last time. Praying it goes even better tomorrow. This isn’t my favorite season in life, but my kids are so sweet to me. No school to deal with this week and this inflammation is treatable, it’s not new disease! Counting my blessings!

Oct 2 and 3 Spinal Tap update

Well, I don’t rock hard enough to get to go on tour with the band… but the good news is that results from my spinal tap last Friday are in and show no sign of cancer cells in the spinal fluid nor infection. Thank God!

It did show inflammation my oncologists (yes I now have two oncologists holding conference calls about me. One the head of the department at UAMC- crazy) believe is caused by a treatment I did in the first half of 2012. It changes the immune system permanently and because the anti-pd1 is generating an immune response, my immune system decided to turn the dial up to 11, causing the brain side effects. So, now they need to tone down the immune response a bit while hopefully not completely stopping the good work against the tumors. I started a steroid today that I’ll take for 30 days then wean off. I continue on the anti seizure med, although my doctor cut my dose in half today because it has made me exhausted and I’ve been struggling emotionally (a normal and one of the more benign side effects, but one we hope improves!) I have an MRI and neurologist appointment to determine my driving and seizure med future as well as weekly oncologist appointments while I am on the steroid and that’s not all! Two infusions this month. Things are actually looking up. This brain stuff has been going on for a month, and next month brings a lot of appointments, but we are feeling there is finally a light at the end of the tunnel. Whew! You all might not have wanted all this info, but there you go!
Oct 3
Holy crap… other oncologist called. Official diagnosis is auto-immune meningitis (my immune system is causing brain swelling.) Doesn’t change anything, just a scary name (not the contagious nor infectious kind, just swelling.) Still need to tone down my immune system with steroids. Apparently the docs and nurses were really worried I had more brain mets, so this diagnosis is a relief. I do have a call back audition for spinal tap on Monday to make sure I am responding to steroids. I believe I am because today is the first time in weeks I am not treating a headache. Sounds like I won’t have anti-pd1 treatment while I am on steroids since that would counteract what we are trying to do. Status of study will be unknown for awhile. Gotta get my brain fixed first. A melanoma friend said hopefully my immune system is being as tough on my tumors as it is on my spinal fluid. Amen and amen. Please keep us in your prayers. Feeling better, but worn out from this journey!

Sept 19-CT scan results

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!

Brain pain, seizure, and steroids! Oh My!

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.

Sept 10- Life is good!

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.