Yesterday I had another meeting with new and current members of my healthcare team. We saw Riley at MGH to check my labs (namely my liver function tests[LFTs]) and then also to go to a new building to meet a new member of my healthcare team, Dr. Carolan – who is a young gregarious Liver/GI specialist. I thought it was funny that he palpated before he percussed my abdomen (but maybe he knows something we don’t? probably -that’s for all my homie NP’s in training).
Because I have limited time to explain everything I’m just going to bullet point it all.
- My LFT’s were actually still trending upwards (AKA they were higher) than when I was last seen on Monday (ALT went from 114 to 285; AST went from 154 to 318; and alk phos dropped a tiny bit to 179
- This was surprising and borderline upsetting to me.
- This points even more towards autoimmune hepatitis being the cause to all my fevers and all my crazy liver enzymes as an adverse side effect of Ipi treatment
- Autoimmune Hepatitis: pretty much means the Ipi got a little confused and made my own t-cells (immune cells) start attacking my liver cells. It is not an infectious form of hepatitis.
- You can bet that I will be Louise (from Bob’s burgers – see Update #14 for explanation) for Halloween next year, although it seems my liver is already there.
- It could potentially mean I will be on prednisone longer than anticipated
- Riley was actually talking about infusing me with IV prednisone yesterday since my labs jumped up about 100 points each, but since we were seeing the liver specialist right after she left the decision up up him, thank god. He decided that we should give my liver a week on the 60mg of prednisone before we jump to IV infusions/or increased/other meds.
- My bilirubin, albumin, and total protein were still normal, which mainly means my liver is still functioning appropriately, even if there is damage. Yay!
- Monday Dec 5th: Liver Biopsy – here we will find out for sure what damage has been done, if there is any damage, and just basically get more information about my liver and how long I am going to need to be on prednisone. Dr. Carolan will be doing all this.
- there is a small possibility my liver is just overwhelmed (like it was with interferon) and not actually damaged, but this seems unlikely at this point given I was already on the highest dose of prednisone for 4 days (not my words).
- the results won’t come in until the following Thursday so during that time I will still be taking prednisone and monitoring my LFT’s
- Dr. Carolan gave me a ball park of about 6 weeks on prednisone – but said we can start to taper if we see any significant drops in my LFTs
- Also just a note, you have to taper prednisone slowly, otherwise you are at risk for the fevers, liver inflammation to come right back. That’s why prednisone is such a bitch.
- Good News:
- My thyroid levels (TSH and Free T4) all went back to normal, so we are just monitoring those for now and no need to medicate! My dad and I think that my thyroid will be fine in the long run and was just under some stress there from, well, all the stress, last week.
- my platelets and blood counts are back to normal!
- Thanks to prednisone, I can stop taking antihistamines around the clock and no itchies!
Me on Prednisone:
- I must admit that I was a little dramatic in my last blog post. All those side effects can happen from prednisone but most of the bad ones happen after several months, so hopefully won’t happen to me if I am only on Prednisone for 6 weeks… we’ll see.
What I am experiencing now:
- mood swings: according to Lege I am like “a guest writer that has taken over his favorite show.” He seems to enjoy it, and he’s handling me better than I am able to, which is one of the reasons why we are the best together.
- I am cycling rapidly through all the spectrums of emotion – namely agitation, excitement, wackiness, sadness, love, depression, and motivation. I imagine myself on a miniature bipolar roller coaster, but mostly I am getting shit done, even if it’s not the most important shit I should be working on (like this blog post).
- Thanks to my lovely doctors I am able to sleep at night, they updated my medication. Time seems to be moving very quickly so without it I could probably be up all night trying to finish my papers.
- I will likely experience some water retention and maybe some other side effects – which I am sad will be happening over my 30th birthday and trip to cuba but ya know it could be worse – it could have happened while I was abroad!
- You know out of all the adverse events that could have happened on Ipi, autoimmune hepatitis is not the worst! I am glad that I didn’t have major GI issues like colitis (inflammation and/or perforation of my intestines which is life threatening and requires many weeks admission to a hospital as well as surgeries). I may have lucked out with a week of high fevers/night-sweats and a very cranky liver with some time on prednisone.
- We believe that Ipi has done its job (clearly) of awakening and activating my immune system. I have blind faith that while Ipi was attacking my liver, that it was also attacking Melanie and I am confident we won’t see her again, or at least for a long time. Again, this is just a feeling I have. All we can do now (after we get all the liver stuff settled) is just continue with 3-4 month scans and blood work for the next 5-10 years.
- In the adjuvant Ipi 10mg/kg trial, recurrence-free survival was ~41% and overall survival was 65.4% (even those who only tolerated 2-3 infusions like me) after 5.3 years. Those statistics are much more favorable than those in the control group and also more favorable than my previous statistics with and without interferon. However, like I said, I am willing to bet I’ll be alive for a lot longer just out of sheer will alone.
- I am so full of love for everyone who’s been a part of my journey thus far. Thank you for your continued support as I schwam my way through this crazy life of mine.
-Ultimate: Believe it or not I was approved to play in a small 1-day mixed gender fun tournament on the Cape called Get Ho Ho Ho with pretty much all of my ultimate friends in the northeast this saturday. I usually go every year (missed last year thanks to school), but I will be there and I will be sober as a bird (unlike anyone else, except Lege who will also be sober but silly, as per usual). I haven’t moved my body other than biking to class and walking around MGH so I am excited to run a little, sweat, a little, and laugh a lot for a day/evening. I am sure I will have great pictures to post on the next blog post. For now, here is some throwback terror twin action from nationals.
-Liver biopsy on monday 12/5 at noon. I have to stop eating/drinking at midnight the night before so I’d reccommend not coming near me with food or drink before then (I have to go to class in the AM).
-Thursday 12/8: Labs with Riley/Dr. Lawrence and f/u with Dr. Carolan with biopsy results and to find out how goddamn long I need to be on prednisone.
see my timeline for more info and I’m sure there will be more updates next Friday.
much love & fuck cancer,
Schwambomb, Schwam, Lany, Elana