Tag Archives: side effects

I’m So Inflammatory I Could Be A Republican Presidential Nominee

No wait, sorry. I guess I’m just inflamed? Whatever.

I’ve been remiss with my latest update. On July 18th I saw a rheumatologist (actually several at once) at Marvelous Ginormous Hospital. They poked me, prodded me, and asked a lot of questions. Then they sent me to have blood drawn.

They agree with my oncologist that my issues (random swellings, including congestion, and hair loss) are probably autoimmune and caused by my treatment. But they don’t follow a normal pattern and don’t appear to be classified as any kind of known disorder. No known disorder means no treatment plan – none other than high doses of ibuprofen until my foot swelling goes down anyway.*

*Spoiler: it’s been a week and half, and the swelling hasn’t gone down.

So while I wait and grow steadily balder, the rheumatologist is going to confer with an ENT who specializes in autoimmune-caused sinus issues. And that’s where I’m at. Swollen and shedding, but breathing. (Until insurance cuts off my sinus meds which yes, they did, but my original ENT found a way around that. Because she’s clever and they’re assholes.)

You Won’t Like My Immune System When It’s Angry

Colitis treated. Two sets of good looking post-treatment scans. Obviously, it was getting too calm around here.

We can’t have that. It makes for a boring blog. So let’s backtrack to April…

Right around when I came off the prednisone, I started getting congested. At first, it seemed like the immune therapy might have caused me to have some nasty seasonal allergies. It happens. But the OTC allergy meds didn’t help. Nasal steroids didn’t help. My sinuses were so congested that even when I couldn’t breathe through my nose at all, I could feel them swelling more. My nose would literally throb as things smushed even more forcefully together. Also, I lost my sense of smell. My allergen tests came back negative, but things didn’t get under control until June when my surgeon put me on a prescription nasal antihistamine combined with a nasal steroid. I could breathe again (and eventually smell again), but if I stop taking them, I immediately re-congest.

May now. I wake up one morning and it looks like someone’s punched me in the left eye. The bruising goes away, but my eye remains swollen.

June. One day my left knee starts swelling. Over the course of a week, it becomes so swollen I can’t bend my leg. X-rays show nothing wrong, and my pain (and lack of it) confuses my orthopedist. She guesses it’s a strange meniscus tear, drains my knee, gives me a cortisone shot, and sends me to physical therapy. All seems well.

About two weeks ago, my hair starts falling out in large clumps again. I have no clue why.

Then July, last week. My right foot starts swelling and hurting. Wondering what the hell I did this time, I go to the walk-in clinic on Saturday because the pain is horrific. Again, X-rays show no damage. The nurse practitioner talks to me, and when I bring up my knee, she has an epiphany. This could all be autoimmune related. She orders three blood tests, and the one for a general inflammation response comes back positive. Yay? Answer?

Maybe. I saw my oncologist this morning, and in his words, he “takes responsibility” – it’s probably all treatment related. My immune system is “still really angry.” This is good for all things cancer, but obviously not so great for other things. Unfortunately, when people have these autoimmune responses to treatment, usually they follow a known diagnosable pattern. Mine appear to be random. (Doc told me again how I make his life difficult.)

So, now I wait and hope the orthopedist can drain my foot next week, but that doesn’t seem likely. Doc said the fluid is spread out; there’s no pocket to drain. I will cross my fingers anyway because my foot is huge, I limp, it hurts if I stand or walk too long, and I only have one pair of shoes (my Chucks) that fit. I am not happy. If I get too fed up, I might repeatedly stab my own foot at this point in the hopes that shit will leak out.

Meanwhile, doc and surgeon are going to discuss me and figure out where to send me next. I still can’t have a summer off. Last one was 2013. On the other hand, it’s not cancer.

*stab stab stab*

Scan Update

Yeah, it’s been a while. I know. But in the world of cancer, no news is good news. I mean, if I’d ended up in the hospital again, I’d have been posting like crazy to pass the time.

So, good news! Scans are unchanged since March. Betty is either dead or still being held at bay by my bad-ass immune system. Given the elapsed time, doc is “very confident” that this bodes well for the future. Unless things start changing for the worse, I’ll continue to get scanned every three months for the next couple years.

I might still be dealing with the aftereffects of the immunetherapy in the form of inflamed sinuses, but there’s a little debate as to whether the treatment can fairly be blamed. My ear surgeon (yes, my ear surgeon has been treating my inflamed nose, I just go with it) is going to consult the nose docs to see what they have to say now. Things had gotten better and are now on the downturn again. It could be as simple as I’ve been on nasal steroids for too long.

Anyway, it’s annoying, but it’s not cancer. And that’s really what life comes down to: cancer or not cancer. Anything that’s not cancer is tolerable (or is with a little a lorazepam).

In related news, happy birthday, Mom!

Off the Sauce and Other News

Betty (and her related side effects) have been keeping me busy this week. Monday required a trip to the GI to get checked out and another dose of Remicade for the colitis. Then Tuesday it was back to Boston to see the oncologist and get checked out by my surgeon. So, in chronological order…

I’m scheduled for one more dose of Remicade, which I’ll get in another month. In the meantime, I’m stuck on this low fiber diet, although I’m allowed to slowly add some foods back in. Still no raw vegetables allowed, but small amounts of cooked ones are okay, as are small amounts of whole grains. I just have to be careful not to eat a lot of either at once. *sigh* I’ve been feeling fine for the past week (aside from bloating, which I blame on the damn diet, and being stuck in a prednisone fog). No nausea.

I am officially done with the nivolumab and possibly any further immunotherapy. No surprise there. So now we just have to hope that the doses I got were enough to keep Betty in check or kill her altogether. I get scanned again next week, which is good because…

Since I’ve been out of the hospital, I’ve been experiencing ear pain again. Now, I had pain around my ear for most of last year, but for the past couple months it had gone away. I’d hoped it had gone away for good. I mean, is it normal to still be experiencing pain almost a year post-surgery? I don’t know. No one does. But it’s back, both sharp pain inside my ear as well as dull soreness where my glasses sit on the cartilage.

Neither oncologist nor surgeon detected any lumps in the area, and surgeon said everything looked healthy when he searched inside my ear. But then, that’s how Betty rolls. She’s a master of disguise. Surgeon thinks, however, the pain is most likely either being caused by dryness tightening the skin or by the nivo jacking up my immune system and causing it to go crazy around the area, irritating the nerves. Since I remember the pain increasing last summer after my second nivo/ippi dose, this does seem possible (and consistent). I hope that’s all it is anyway.

I’d say I’ll know more after the scans, but as I already stated, Betty is a master of disguise. Luckily, she doesn’t seem to be able to hide in my lungs, so that will be a good indication of whether she’s making a return elsewhere. And so it goes. Please let March be a kinder month than February!

Home!

Home at last, and I lasted the night. One step at a time. Some fun observations…

1. I’m on the prednisone mellow. Everything’s just fine. Which is good because it means I don’t mind quite as much that…

2. I just lost as much hair in the shower as my husband has on his entire head. And more keeps coming out. Prednisone was doing that to me a little before this episode, but I’m guessing the IV steroids are primarily responsible for the clumps. Yay for hats and scarves.

3. My stomach is so bloated I look pregnant, but I lost about ten pounds. I’m sporting quite the cheekbones. Alas, I bet a lot of that weight is muscle because…

4. I have zero leg strength. I wobble as I walk and stairs are a challenge. I knew it wasn’t good when I walked the hospital ward, but I thought it was partially lack of food. I now suspect this will take more time to overcome.

But hey, I’m home! And in time to celebrate Mr. Nemesis’s birthday this weekend. Bring on the cake and pizza. I’m medically required to eat bad foods for the time being, so I’ll enjoy it until I start craving broccoli (which will probably be sooner than I can eat it).

Death by pizza

Would it actually kill me? I don’t know. Would I almost be willing to risk it? Maybe.

The steroids seem to have me stabilized again. This time, the docs have already transitioned me off the IV version and onto my old friend prednisone. There will be no more assuming that I can transition to that and real food simultaneously.

Thursday is the earliest I can be released. That gives them one day to fully observe me on real food. Everything I eat is watched, from when it goes in to how it comes out. The poor nurses.

That leads me back to pizza. I wasn’t allowed to eat anything until this afternoon, and I was ready to gnaw on my sheets. Finally, I’m back on clear liquids. Maybe tomorrow, soft, bland food. Oh, the possibilities. When I get out, it will be more soft, low fiber food for a week. And lots of steroids obviously.

In the meantime, I’m trying to keep entertained, and waiting to have my IV diet (for electrolytes) removed so I can circle the ward for exercise without making such a racket. It’s an exciting but, for the moment, mostly pain free life. Beats needing to be carried out of the house by paramedics any day.

Fooled you

Said my body to me.

I got the good drug Saturday evening and things were looking up. The hospital discharged me Sunday afternoon. Then everything went to hell.

Was taken by ambulance from my house to the local ER Sunday night, and from there by ambulance back to Boston. I’m back on the IV steroids, etc., and am currently waiting for more information. Been rescanned, re-X-rayed, sucked dry of blood once more. Just hoping there’s no re-colonoscopied in there too. Sleep would be nice, but the closest I got was being knocked out with morphine.

On the plus side, I got into the cancer ward this time so I have a very modern, private room with a beautiful view of Cambridge. It’s practically luxurious. Still sucks though.

You think your valentine’s weekend was bad? Let me make you feel better.

By 6 on Thursday, I was in such pain that it didn’t seem wise to wait until Friday to see the doctor. Following the nurse’s instructions, we did not pass go, did not stop at Quaint Local Hospital (who doc’s office is sure is perfectly competent but is not Magnificent Ginormous Hospital, and therefore can’t be trusted to know colitis from a heart attack). So we roadtripped to Boston.

The ED had been told to expect me, so we sailed through registration and triage. I sent Mr. Nemesis home around nine, having packed the essentials for an overnight. (Loaded e-reader, phone, charger, toothbrush, deodorant. But no hair brush, damn it. Still, not bad planning for someone who spent most of the day curled in the fetal position.) I was admitted and taken to a room around 11 where I proceeded to get no sleep because I was being constantly prodded, and I had enough blood drawn to feed Dracula. (Can they just draw from your IV? No, they cannot. Some tests require individual stabbings from multiple spots. I dunno, in case your left arm blood doesn’t match your right?)

Somewhere between arriving at the ED and midnight, the prednisone I took in the afternoon must have kicked in because the pain and worst of the nausea went away on their own.

Friday morning I was treated to the next step: a colonoscopy and an endoscopy. Guess what a last minute colonoscopy requires? Enemas!

TMMI COMING! YOU’VE BEEN WARNED! SKIP AHEAD IF YOU MUST.

Water enemas require you to lie on your right side for 15-20 minutes while your colon is blown up like a water ballon. You’ve had no sleep, no food, you’re nauseas, and now you’re being water boarded out the ass end. Then, when you can’t take it anymore, you’re allowed to dump the water, which seems like if should want to be dumped a lot more easily than it actually does. If you ever questionned whether our species was intelligently designed, this will answer that for you. Since I hadn’t eaten much in the last 48 hours, I was told I did pretty well at not cursing every living thing in the vicinity. Being given dilaudid and thus not giving too many fucks probably helped.

END TMMI.

Thankfully, the mix of the dilaudid I got with the enema along with the sedatives during the scopes meant I didn’t wake up gagging with a tube down my esophagus this time. On a related note though, I was completely spaced prior to the procedure. What is my birthday? Let me think… Lawyers, pay attention. Should something turn out to have been screwed up during the procedure, those consents I signed are totally invalidid.

Upshot from the scopes. My colon is normal. My upper intestine is inflamed, and that seems to be preventing food from leaving my stomach. Enter pain and nausea. While it can’t conclusively be said that the nivo is causing this, it’s the obvious culprit.

So I’m on IV steroids, an IV stomach acid reducer, occasional anti-nausea drugs, and the usual other drugs they have to give you to keep you alive on bed rest. I’m also on a liquid diet. Since Friday morning, all I’ve eaten is 8 oz of chicken broth and a couple spoonfuls of jello. Strangely (or not under the circumstances), I haven’t been hungry. For the record, however, I do not recommend this as a weight loss treatment.

Meanwhile, I wait for results from the biopies that were taken during my scopes, whether I’ll get better drugs, real food, and when I can leave. I really want to leave.

My roommate has a large, loud, rude family, and they are around constantly. Putting aside my introverted tendencies, they talk so loudly I can’t hear myself think, they talk about food in front of the patient with nausea, and they joke about not waking people up right next to me as I’m trying to sleep. Roommate asked this morning if they bothered me. And look, I’m not yet at the point where I’m going to freak out on an 80-year-old woman with diabetes, breathing issues, and possibly cancer. But I’m getting close. As for her grandchildren who brought food into the room though? I hope they experience the joy of having their colons turned into water balloons like the unintelligently designed shit sacks they are.

In fact, that might be the sole upshot from this mess. I have a new way cursing humanity. And believe me, I have much to curse.

So, feel better yet?

Back on the Other Sauce

So that second dose of nivolumab seems to have done what it took four nivo/ippi doses to do last summer. Sunday night I started with nausea and mild stomach pain. By Monday the pain had worsened. By Monday night I was vomiting. By Tuesday, well, the same (drugs did NOT help), and I had an appointment to see my oncology team on Wednesday. By Wednesday, I was in such agony that I ended up in the local ER instead.

In conjunction with the oncologist’s office, they ran a buttload of tests on me, gave me good IV drugs to control the vomiting and pain, and finally some IV steroids and sent me home. Unfortunately, those steroids wore off in half the time they were supposed to. So, as today progressed, I went from minor pain in the morning back to kill-me-now pain around noon.

I’m now back on the prednisone (and waiting for it to kick in, damn it), and tomorrow I’m being admitted to the hospital after seeing the oncologist. I was told to plan for at least one night, possibly more. I’ll be getting IV steroids again and the same drug they gave me last fall for the colitis.

It doesn’t appear that this is colitis, at least not the same sort. It’s my upper GI track going nuts this time, and I sure didn’t have the pain last time. I’m kind of longing for the last time actually… At least that was controllable with immodium. This defies control with even most prescription drugs.

Here’s hoping I make it through the night! If it gets worse or the prednisone doesn’t tide me over, I’m under instruction to get back to the ER. And just when I thought things had gotten so dull around here that I had nothing to blog about.

I’ve Erupted

Actually, I erupted some time ago, but I’m finally getting around to posting about it.

my footBased on my dermatologist’s best guess, which is based on biopsy results, I’m covered in fixed drug eruptions. Thankfully, in my case, they’re so far mostly confined to skin that has very little hair, so my feet, underarms, thighs, and the backs of my knees have it the worst. I even have one between my fingers. Also thankfully, it’s winter. I look like I’m covered in chicken pox.

On the plus side, if they’re still around in short-sleeve weather, I suppose they’ll be helpful at keeping people away in public spaces. I’ll just pretend to scratch a lot, and hope people assume whatever I have is contagious…

I’m told that when they go away (whenever I stop taking the drug that’s causing them, which could be anything) that I’ll be left with patchy, discolored skin. Awesome! I suppose that’s hundreds of new excuses to cover them up with pretty tattoos.

Speaking of which, it’s about time for my annual fuck skin cancer, skin reclaiming tattoo, and these annoying spots are interfering with my original plan.