Hi friends, Again, it has been too long since I posted an update on here. When I started writing this post in March (and came up with the title), things were not great… but thankfully now in June we miiiiight just be turning a corner. TLDR: Good news: immunotherapy seems to have cleared the cancer […]
Hi friends,
Again, it has been too long since I posted an update on here.
When I started writing this post in March (and came up with the title), things were not great… but thankfully now in June we miiiiight just be turning a corner.
TLDR:
Good news: immunotherapy seems to have cleared the cancer for now!
Bad News: immunotherapy went a little unhinged and attacked my brain/meninges. Failed multiple treatments to get off prednisone so still dealing with that. More below:
Timeline has been updated!
Aseptic Meningitis
The results from my initial lumbar puncture were very strongly positive for aseptic meningitis back in December. I think my whole care team was surprised by how much inflammation was present in my lil ol’ cerebral spinal fluid. The aseptic meningitis was caused by my treatment for cancer and not the actual cancer itself. The risk of this adverse reaction happening was <1% y’all. I am officially no longer comforted by statistics of any kind since I have been on the wrong side of statistics too many times!
So as you know, back in early December I started high dose steroids (60 mg prednisone) to treat my meningitis symptoms. Things were going fine for a bit, with a couple hiccups where I briefly needed to increase the dose but overall went smoothly. Until…. after several months I tapered down to 5mg prednisone and that’s when everything blew up again. My meningitis symptoms came back with a vengeance. I was nauseous, vomiting, weak, headachy, tired, full of general malaise. We started to increase the prednisone little by little, but it wasn’t working. In a panic I contacted my neuro immunologist – she decided that we need to try another treatment for the meningitis since I kept failing the prednisone taper.
Intravenous immunoglobulin
Welcome IV IG (human immunoglobulin). IVIG is a treatment that involves a mixture of antibodies from human donors that theoretically help fight autoimmune conditions and inflammation. I endured back to back 6 hour infusion days for my first dose of IVIG, which went smoothly thank goodness. IVIG can have a lot of side effects or reactions to treatment so they do a lot of pre-meds and slow titrations for the first couple of doses. I felt great over that weekend but it turns out they also gave me IV prednisone which clouded the picture. As soon as that wore off I was back to vomiting and non-functioning so we had to go back up to 40mg of prednisone :(. I continued to have monthly infusion of IVIG for the next several months. Each visit was 8+ hours so it was a slog ; a full day completely lost to sitting in an uncomfy chair connected to tubing and beeping machines. They had to check my blood pressure every hour so resting was even difficult. Long story short, after 3-4 infusions, nothing changed and we assumed IVIG wasn’t working. Every time I tried to taper below 15mg prednisone my meningitis symptoms would recur. Super frustrating. I hadn’t even considered “IVIG not working” as an option, so this was a little alarming to me.
Cellcept (mycophenolate mofetil)
Out goes IVIG and in enters cellcept. Cellcept is a drug that many organ transplant recipients take so that their immune system doesn’t reject their new organ. It works by suppressing the immune system – which in turn makes the patient (me!) immunocompromised. Super fun, but a risk I’m willing to take to get off prednisone. We have been slowly titrating up my cellcept dosage to prevent side effects. So far I haven’t noticed anything new, which is a relief. I THINK it MIGHT be working (fingers crossed). Prior to starting cellcept, every time I would sleep past 8am, I would wake up with an awful migraine. Since starting it, I have only had one migraine that required me to medicate it. I have an appointment with my neurologist on Friday to discuss trying to start taper prednisone below 15mg. The last time I spoke to her, I was struggling to find the words but ultimately I was that this strategy might also fail. I have been battling this for so long it’s been starting to feel like this is my new normal and maybe I should prepare for the possibility of no cure. I don’t remember exactly what she said, probably went into disassociation mode but I think she reassured me that this works a lot of the time soooo here’s hoping.
I will probably be on cellcept for a minimum of 3-6 months. Once I am able to taper the prednisone to single digits, we will have to do a cort-stim test to see if my body is able to produce its own cortisol. There is a chance that after being on prednisone for so long my body is adrenally suppressed and is no longer able to produce it’s own natural cortisol (stress hormone). This could result in a life threatening emergency if my body were to become stressed (due to illness, exercise, emotional stress, surgery, etc) and unable to compensate for increased stress (could result in hypotension, hypoglycemia, electrolyte abnormalities, etc). If this happens I will need to be on a small amount of steroids for the rest of my life and would have to increase my dose during times of stress. I hope this doesn’t happen, but I am not too optimistic anymore since I have been on steroids for 6 months now and let’s face it – I have terrible fucking luck when it comes to my health.
What’s the big deal with being on prednisone?
I have been asked this a few times. If there weren’t such horrible side effects of prednisone, I would have no issues with it. It certainly stops my meningitis symptoms. It gives me energy, and that’s basically where the benefits end. There is a laundry list of side effects – many of them I have started experiencing. Acne, fat redistribution, easy bruising/bleeding, stretch marks/striae, insomnia, mood swings, muscle loss, adrenal suppression, infection, diabetes, metabolic syndrome, osteoporosis, stomach ulcers, unrelenting hunger, weight gain, water retention, etc, etc. I don’t like the way my body is changing, and mostly I hate feeling like I have no control over anything. It’s a lose lose situation. This is why I am so eager to get off the steroids.
Delayed Family Planning
The other huge bummer about cellcept is that is known to cause miscarriages and birth defects while it’s in your system. Originally Lege and I were hoping to implant an embryo over this summer that we created way back December 2023 before I started treatment. I went through a bunch of procedures to make sure my body and uterus was ready for implantation but now this will now be pushed back to a minimum of 9 months from now. It’s frustrating not having control over anything that happens with my body. Not to mention I don’t need another “thing” to worry about while trying to get pregnant – Is the cellcept out of my system for sure for sure? woof. Jordy has started asking for a sibling and we want nothing more than to give him a living one.
More Ultimate
The silver lining of not being able to get pregnant this summer is that I get to play one last season of club ultimate! This certainly helped me process the grief of delaying this very desired pregnancy. I am playing mixed club again with Slow and will also be playing masters with Slower, lol. Ultimate is still so good for my mental and social/emotional health. I am glad I have time with teammates old and new as we try to make it deep into the post-season.
Scan/cancer Updates
February: My Brain MRI in February scared me. There were all sorts of notes about asymmetric t2 flair hyperintensities/lesions in the caudate nuclei and basal ganglia that ultimately suggested encephalitis. Since I wasn’t really having any cognitive symptoms we decided it was subclinical encephalitis caused by my treatment and would just continue with steroids. My other scans showed some weird shit going on with my liver that required me to get a separate liver MRI. Another long story short, they think whatever they see on my liver is benign.
My chest/abd/pelvis CT was reassuring with no new lesions and the primary lesions looking “less conspicuous” than prior images. All great news!
May: I had my most recent scans right before MDW. My brain MRI showed interval decrease in the lesions on my brain (which means mengintis/encephalitis is improving!) This gave me a big ol smile on my face.
Chest/Abd/Pelvis: no new suspicious lesions! They didn’t mention the primary lung lesion, so hoping it’s gone? But if I learned anything, I’ve learned that radiologists differ vastly in what and how they report things. So I’m waiting to see Dr. Lawrence to confirm or deny if that lesion is actually gone. It would be pretty sweet if it was! Overall this is good news! The immunotherapy fucked up the cancer successfully, but sadly also fucked up my brain/adrenals in the process. Here’s hoping there’s only a few more months of prednisone and I can stop grimmacing at my unrecognizable reflection.
Derm: I had a biopsy of a lesion on my chest that wasn’t healing at my last derm appointment in May. This was the first biopsy in a long time. Thankfully the pathology came back benign and now I just have an ugly red splotch on my chest that will hopefully go away over time.
Next steps:
I continue to see my oncology and neurology teams on a monthly basis to check in. I will be seeing Dr. Lawrence 6/9 but I don’t expect any new news. I’ll be seeing my neurologist (Dr. Manzano) on Friday to follow up and hopefully make a plan to start tapering prednisone really slow. I am a little nervous that after the tournament this weekend I woke up with a really bad migraine and have been feeling a little off this week, but hopefully that’s just my body being tired from the exertion and lowering my threshold for meningitis symptoms.
I will likely continue to have fully body scans every 3 months for the next several years. June 28th will be 9 years since my initial diagnosis. So far I haven’t made it more than 6 years without a recurrence, so my goal is to make it to 7 years this go around.
Everything has been so scary with the trump administration cutting funding for cancer research and clinical trials. I feel so fortunate that I am not in active treatment currently, but the anxiety and dread for the state of the world is certainly weighing heavily on me.
I’m guessing it will probably be several months until I update again – so feel free to follow me on instagram @schwambomb for more immediate and timely updates.
As always, mad love to family and friends, especially Lege who is often having to cover Jordy care when I am not well. We couldn’t do this without our community, so thanks 
