Good news or bad news? Whatcha want? I vote to go out on a high note. And since this is my sandbox I am going to give you the bad news first. Save the good news.
Today's chemo pretty much sucked. Well, actually, that is not entirely true. Can something suck that never really happened? Confused yet? Allow me to perpetuate your confusion with a bunch of medical jargon. In short, Mandy's allergic reaction to the Carboplatin, one of her chemo drugs, that we have been struggling with kicked our butts today. Hard. It was not a gentle toe to behind contact. It was a full on Karate Kid kick to the a$$.
In the last three weeks, the breakthrough reaction, even with the premedications of Benadryl and Hydrocortisone, have increased in severity and she has been able to tolerate less and less of the drug before needing to intervene.
Week 1- She got about 80% of her dose of Carboplatin before a mild, but certainly noticeable reaction. Concerning, but thought to be an anomaly. Joked about them giving us defective no sleep inducing Benadryl.
Week 2- She got about 50% of her dose before she broke out. Worse than Week 1, both in severity and in fear factor for what this might mean as far as continuing the protocol. Significantly less joking this time.
Week 3- Today sucked. Did I mention that already? I'm just sayin. It sucked. She looked like Angelina Jolie for a while today. While a selling point if you are me and would like to look like her, not so much if you are a little girl, who had big, red, swollen, over botoxed looking lips. This along with being covered in big, red, swollen everything else. She only got about 20% of her medication before this happened today. And, just for fun, it happened at warp speed. She went from 0 to 60 in a speed that would make most sports cars envious. It started with some slight redness around her port to covered in hives and swollen face in about 3 minutes.
In one minute it was just me nervously saying to the nurse, "Becky? It looks like she is starting to have a reaction again." The next three minutes or so saw the carboplatin being stopped, the hives spreading rapidly, lips and nose and ear swelling, a Doc being paged out of a procedure, another 20 mg of Bendryl going in, a pulse oximeter being put on her finger, 4 nurses, one doc and one PA primed and ready to go and standing by her chair and an oxygen tank being parked by her "just in case." Thankfully, we didn't need that last item.
The fabulous medical staff there got it under control quickly. We could not finish the chemo. It was too risky. The thing about an allergy to Carboplatin is this: it is more like an allergy to peanuts than it is to cats. It can cause full blown anaphylaxis. Not a safe or fun party trick.
So, next week, we will take one more swing at it. The pharmacist is ordering the same drug from a different manufacturer. This is on the off chance that she is allergic to an additive, rather than the drug itself. There is small hope of this, but it is worth a shot. If it begets the same reaction, we will have to go to second line treatment and leave this protocol altogether.
I can't begin to explain how scared I am to pump this drug into her again next week. I can't begin to explain how terrified I am at what the reaction next week could be. I can't begin to explain how much I don't want to switch protocols to a second line treatment. I can't begin to explain how much this whole thing just sucks.
So, there is the bad news.
The good news, thanks to the appetite stimulant, Mandy has gained a full kilogram! That's 2.2 pounds to all the Americans like me out there who don't have a clue about the metric system! :-) My metric conversion skills began when Mandy was diagnosed because oncology clinics measure in metrics. Plus, it makes me feel all smart and stuff to toss around those conversions like I actually know stuff. This from the woman who was ready to pull her hair out helping my fourth grader with his Sunshine math yesterday. Oh yea, baby, I got mad skillz in math.
It was a day that was much shorter than it should have been. No usual 9 hour chemo today. We were out of there a full 3 hours earlier than usual. Yet, it feels like it took for-freakin-ever. I am exhausted. I am worried. I am discouraged and I am going to go cat nap next to Mandy and monitor her for any other hives rearing up.
Love to all~
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4 comments:
Yeah. I wish I had an answer, but you already heard the best I got and it ain't much. Love you though, always here for you. #4 was a good mix.
Hang in there!! We pray that the new vendor's product will work and not cause a reaction. We're delighted to her Mandy is eating well - 1kg is nothing to sneeze at. Hope that tread continues for a while.
As always, let us know what we can do to help.
TTFN,
Sid and Renae
Natalie,
I am sorry to read of Mandy's nasty reaction to her chemo. Scott has had a few scary reactions to some of his medications but not to the actual chemotherapy.
I will be thinking of you and hoping that the change in supplier will be the key to her being able to continue with this drug.
Best wishes, Stephaniex
Your're right, today did suck! But i wanted to tell you a little story about what happened to Liem about a year ago. He was needing a 5-7 hour infusion of IVIG (you can look it up if your interested), it's not chemo, but his body did need it once a month for 6 months. The first infusion, Liem had a terrible reaction afterwards, he turned RED from head to toe, fever, shaking, and frozen in one position. Scared the &*$#@ out of me! You know the drill, drugged him up on Benadryl and some other meds and he was better. So next month, they pre-medicated, but he still had the same reaction, but this time not after it was done, instead ony halfway through. They gave him more benadryl and meds, but it didn't completely help. The next month (his 3rd time) They pre-medicated, but gave him IVIG from a different manufacturer. It did the trick! NO REACTION AT ALL for the rest of his treatments! It was the way more expensive kind, so it was more difficult to get...but it worked! So, this could be the very reason why Mandy's having these nasty reactions. I'll pray.
much love!
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