allergic reaction anyone (tennis anyone?)

SoCalGal · 05-17-2015, 08:36 PM

Went for my infusion this past Wednesday - I am already on premeds (prednisone blast 40 mg day before, plus zantac, singulair, and 50 mg of my BEHATED benedryl the morning of) for a reaction to Herceptin a few years back - so, I'm going at a decent clip. Meaning 2 hours for slow herceptin, followed by 1 hour slow perjeta, followed by 12 MINUTES (of 60) of my BELOVED Avastin, when POW - my arms start to go numb, heart is pounding and I shout --stop the pump something's wrong!!! Ears turn bright red, heart is pounding out of control, and the stupid pump, which is brand new, has NO CLEARLY MARKED "STOP" BUTTON. (Every pump I've ever used has a RED STOP button). These have zero-visibility buttons. At that point my alarm at the allergy turned in to total PANIC. Thank goodness my clear-minded daughter found the camouflaged "pause" button. And I was quickly surrounded by about 7 people/nurses etc.

And once the drip stopped all symptoms subsided. Well, my panic did not back off so an Ativan shot helped that.

My doc was called and the on-duty (not my regular) NP decided without MY TWO CENTS that I had had enough and the IV was removed. I was arguing to start up the Avastin drip again, at an even slower rate, to see if it was just too much, too fast or WTF???!!! They just took it off the table, which is maddening, saying it was too risky! I already have st4 cancer, so how risky could it be? I could have at least determined if I could tolerate a very slow drip rate.

NOW I know nothing except I did not get more than 12 minutes of Avastin. And the thought of ever doing an infusion again is so terrifying right this minute, I just can't imagine going back there. How much Ativan will it take to get me back in that chair? And how much benedryl to keep me alive? They should have let me get back on the horse while I was still willing.

I have no game plan except to go back to the allergy doctor although he truly was just winging it a few years ago. I am already unhappy with the premeds, HATE the prednisone it makes me crazed, and HATE the benedryl it makes me stupid and just feel so creepy. I already can't go for my infusions alone, this is just going to dial it up to impossible. I am so upset - and by the way my markers came down a bit on the two rounds of Avastin, so I think I really need to get back on this drug.

I feel like I was just getting my feet under me again, and back in the fight game and now I am in free fall, no idea what's gonna be.

If anyone has any ideas/experience on the allergic reactions please weigh in.

Thanks very much...

Carol Ann · 05-17-2015, 08:43 PM

Hi SoCalGal, no advice but I just wanted you to know I am so sorry about what you're having to go through. This sucks.

Carol Ann

Ceesun · 05-18-2015, 01:27 PM

Flori, No experience yet on the allergy scene, but please know I am pulling for you always. It is hard to get back in that chair, but you can do it, and maybe the staff will step back, regroup, and get it together ASAP! Hugs, Cathy

SoCalGal · 05-18-2015, 05:29 PM

Thanks Cathy & Carol Ann. Just re-reading my own post and am exhausted from it, lol

)

Catherine · 05-23-2015, 07:03 AM

It was an honest,descriptive post. I agree with everything you said. Hugs to you Doctor SoCalGa

Lucy · 05-23-2015, 09:43 AM

Bless your heart. It is maddening when medical personnel won't listen to the patient, who knows their body best and who should be allowed to continue a treatment if they're willing. After all it's the patient running the risk. Typing that I'm now wondering if it's a fear of a lawsuit that kept them from continuing treatment. That's the absolute wrong reaction to treating a patient but I'm wondering now if it had an influence on their decision.

In any event, I'm sorry you're having to deal with this. I hope you will find a way to continue treatment without so much trauma. Sending you cyber hugs

Laurel · 05-24-2015, 11:53 AM

Man, Flori, I got nothin', but will pray someone way smarter than me does. Avastin is a good drug. I do hope you can find something equally effective that your poor body can tolerate. I wonder whether it is just too much chemo on one day for you given you have been so heavily treated? Perhaps one day for the Vit. H and Perjeta, and another for the Avastin? I know that means being tethered to that damned pole twice, but if it gets the job done.

The medical guru's are fearful of an event from which they may face a lawsuit. Now while that may rankle you in light of your desperate circumstances, you have to try to see it from their point of view. A visit with the allergist may lessen their paranoia enough to permit them to resume the Avastin in either a slow infusion or separate day or both.

I think it is concern for legal ramifications down the road if you should react very badly to Avastin a second time that gives the medical staff pause. In Pennsylvania, a most litigious state where our multitude of colleges fart out lawyers like a beer, beans, & egg bender, the practice of defensive medicine is rampant. The point is that if you can get into their heads you may be able to find a way around the paranoia. The allergist offering a new med to circumvent the immune reaction may give your docs the courage to attempt Avastin again.

I know the whole process of the big fight is exhausting and you are certainly justified in your feelings of frustration. I sure hope you can fall back and regroup for another siege, my friend. I will pray so and that you find an answer quickly.

SoCalGal · 05-28-2015, 02:03 PM

Laurel - you gave me a big laugh with this: "In Pennsylvania, a most litigious state where our multitude of colleges fart out lawyers like a beer, beans, & egg bender"

Yes, no one will give me a straight answer and it is maddening to figure out on my own. I know that the allergy doc meant well, but he spent quite some time on the idea of having my head on straight, listening to my body ("if you are feeling tired and don't feel you should have more drugs, then don't have the infusion") as if I'm an idiot. I had to remind him more than once that I've been doing this every 3 weeks for 8 years, I think my head is on just fine and my intentions for wellness is pretty clear!

Here's the email I sent my onc this morning:

Saw the allergist, here's what he said:
Make sure they flush between SLOWLY.
He did not know why or what caused the reaction and said a lot of times it could be a fluke, or it was running too fast for ME in that moment.

If it was a severe allergy, he thinks I would've had more symptoms like wheezing & tightness in my chest or a rash. The fact that it resolved so quickly leads him to believe it was more about the rate then the drug.

He suggested holding on Perjeta for now, so that I'm getting Avastin while premeds were more in effect and would be less agents for my system to handle. He told me to follow my gut instincts and only do whatever infusion I thought I could handle. He said that one of the most important things is that my head is on straight when I am coming in, so that I don't have a lot of anxiety when they start my infusion. (Ha-ha as if this is my fault or in my control--as if I'd choose to have an allergic reaction right in front of my daughter, right when I was getting the meds I've been fighting to get).

My onc replied to this email, "great. hope it all goes well".

Sigh...
Great, me too.

tricia keegan · 05-28-2015, 02:25 PM

I'm sorry this happened Flori and hope you can try again with the Avastin, albeit very slowly!

Laurel · 05-31-2015, 12:18 PM

Sheesh, Flori, so YOUR head is at fault here....poor, silly woman that you are. Just because women are in tune with their bodies more than men we are told "it is all in our heads."

From the sounds of it you are semi-short-of in the driver's seat, meaning that you determine what you take, when you take it, and how quickly it is infused including how quickly you are flushed between meds. Well, you could be in a worse position, I suppose.

What are you going to do? Try Vit H, then Avastin, and maybe if still going strong the Perjeta?

BTW, I am happy you had a good belly laugh about my "howitzer flatulence analogy!" No offense intended to any legal eagles on our site, but lawyers sure can clog up progress in matters. Pennsylvania needs Beano to deal with all the attorneys our colleges produce!

Dakini52 · 05-31-2015, 09:47 PM

What the heck kind of response was that from your onc??

SoCalGal · 06-02-2015, 11:23 PM

Debbie - My onc's response seemed very disconnected, right? She is a leading ONC in cancer world, well known and normally quite supportive and caring but checked out on this one.

Laurel, yes, I feel like I am a colleague not a patient. It's weird but not necessarily bad. I don't think that they have any idea why I'm able to be okay on targeted only, vit H etc. Exceptional patient mind-set with low disease burden? lol I don't honestly know. Meantime, tomorrow is the day. I'll start w/vit H and allow some time before firing up the Avastin. Hopefully there will be no episode. In reality, there is not enough Ativan on Planet Earth to remove ALL my anxiety. Keep yur fingers crossed

Will update tomorrow after drip.

Carol Ann · 06-03-2015, 07:55 AM

Keeping my fingers crossed for you tomorrow!

I'm saying WT?! too after your onc's response to your email!

CA

Laurel · 06-03-2015, 01:41 PM

Paging Dr. Flori! Paging Dr. Flori! Dr. Flori you are being paged! Just wondering how things went for you today. How did the infusions go and in what order did you prescribe them?