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Hello Teal Sisters. I'm curious if anyone has had an allergic reaction to the CT scan I/V contrast even after taking the pre-medications. I'll provide some background for explanation. In February, 2024 when I had my first CT scan at PMH upon initial diagnosis, when the scan I/V contrast was injected the outside around both my eyes went incredibly itchy. I told the technician and they called the radiologist. They gave me a Benadryl and monitored my vitals for 30 minutes. The itchiness subsided quickly. Due to the reaction I was told I likely had an "allergy" or "sensitivity" to the contrast dye. For each subsequent CT I take a 50mg Prednisone tablet 13 hours prior to the CT time, and then another one, 1 hour before the scan PLUS 50mg of Benadryl. I've had 3 scans since February (2 in the U.S. and one at T.O. General). All with no issues. One note is that for the U.S. based CT scans, there was an added Prednisone taken 7 hours prior to the CT time.

Yesterday (August 21st), during my CT scan, as soon as they injected the I/V contrast, the outside of my eyes went itchy again. I told the technician and once again, they needed to monitor me for 30 minutes (the radiologist was called in as well). The itchiness disappeared quickly (in about 10 minutes) however my tongue went tingly (that took a few hours to go away). There was NO swelling of my tongue and no rash anywhere on my body nor any shortness of breathe etc.

I was told by the radiologist that I had a 'breakthrough reaction'. Meaning that even with the preventative medications, I still reacted to the contrast. As a result, they were putting on my file that I can no longer have CT's with contrast. I asked what the alternative would be going forward and was told an MRI since the contrast is a completely different substance.

So a long way around to my original question. Has anyone else experienced a 'breakthrough reaction' to a CT scan contrast, even with the pre-meds? If yes, were you told you could no longer have CT's with contrast? I thought it was a pretty drastic reaction considering it had not happened 3 of the prior times. Additionally my reaction was not severe at all. I did ask about adding the additional Prednisone like in the U.S. (7 hour prior to the scan). I was told that they do not do that process. Not 100% why not. Also since it's only been the CT's at PMH where I've reacted, I'm curious if there are different 'versions' of the contrast being used.

The technician did say that ultimately my oncologist has some say. I've added it to my list for my next appointment.

Appreciate any insights from others. Sorry as well for the long note.

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Alwayslearning Although I haven’t had a breakthrough reaction, I thought I’d let you know that my pre-medication has always included a 7-hour-prior steroid. So, mine is at 13-hr, 7-hr, and 1-hr along with a Benadryl capsule.

By the way, my first reaction to the contrast dye was about 35 years ago for a different issue. It was just a hive on the back of my neck. The technician noticed me scratch and asked to have a look. He said to tell doctors for any subsequent scans. Well, almost 30 years on, I forgot about it and the CT department called me the day of the appointment to ask if I’d taken the pre-meds and to say that I couldn’t have the scan until I did. I couldn’t get hold of my doctor so the scan had to be prescheduled. I haven’t forgotten since!

Thanks @GGail. That is very interesting. Do you get scans done at PMH? In Ontario? I'm curious as I want to be armed with this information for when I meet with my oncologist.

I had the same "reschedule" issue when I was in Florida. I did my pre-meds per the protocol I'd been using at PMH. When I arrived for my scan I was told I missed the "7 hours prior" dosage. I of course was oblivious to that as it wasn't part of the PMH procedure. So it's just 13, 7 and 1 hour prior Prednisone dosages. No Benadryl. Thankfully they gave me all the meds without any extra charge, and rescheduled the scan. I was pretty miffed because I'd taken the meds for nothing. It just seems so strange that the protocol is so different. Again, lesson learned to always ask them what their procedure is for pre-meds. I'll own that.

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Always learning
I’m in Newfoundland and the prescription has always been the same, no matter who has written it, for the last 6 years.

Sent from my iPad

@GGail ... well how interesting is that! It does burn my butt a bit that they dismissed me so quickly that it "wasn't the protocol here". This is definitely on my list now for my oncologist. I want to understand flexibility for pre-med "protocols" (since clearly there is an option to juice me up on more steroids), as well as variations in the contrast dye based on manufacturer etc. Since I've only reacted at PMH, perhaps there's something in the lot type that they use. I think there's more to this than just a "nope, no more CT's with contrast for you". 

Yet another reason why OVdialogue is so invaluable to us all. Information is power baby!!!!

#Treatmentandsideeffects

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@Alwayslearning

Stick to your guns!! As an avid self-advocator, I just keep at it until they "get it"!😁 I have never had a CT throughout my journey without contrast (drink + IV) and believe that I've read there is benefit to having the contrast. I can't imagine that there's not an alternate contrast or med schedule…really, what's the biggie about at least trying to add another dose if that may help. Good luck!!

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Thanks @GloHo ... my oncologist tends to be a pretty "what do you need, how can I support yo" kinda person. I'm looking forward to this discussion with her!

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@NovaScotiagirl that does NOT sound like a fun reaction (although I guess now of them are but still...). 

So great to hear that your latest CT is showing stability on the tumour and yeah on the CA 125 (mine was 20 recently and I tend to be 18/19). Sorry however to hear about the possibly fistula (which I had to google) and enlarged lymph nodes. Glad they have the CT scheduled for follow-up. 🤞 Are you in any pain? I hope not.

#Treatmentandsideeffects #Supportandencouragement

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So, I'm in Ontario too, but in Ottawa.  I had a very slight reaction to a previous CT (1 hive on my face and a very itchy nose), so for my last CT they pre-medicated my.  The pre-med protocol was prednisone at 13 hours, 7 hours and 1 hour plus a benedryl at 1 hour.  Interestingly enough, I was also told to come an hour and forty minutes early for the oral contrast, but when I got there, the staff wondered whether I really needed both and called the radiologist.  In the end, they decided I didn't need the oral contrast and said they'd CT me right away.  I pointed out that I hadn't taken my 1-hour-before meds (because I expected to take them during the oral contrast.  So they had me take them right then and there and then took me in for my CT.  Note that that makes the timing for all of them wrong!

I did have a "breakthrough reaction," this time more hives than before and an itchy face all over.  They called the radiologist to come and look at me, and she suggested perhaps next time to have either an ultrasound or an MRI, and to discuss it with my gyne onc.  I don't know if I'm really more allergic or if it's because the pre-med schedule wasn't followed (through no fault of my own).  

I understand that they take allergic reactions very seriously, because if you've had one, you're more likely to have worse ones to follow, and they're concerned about possible anaphylactic reactions.  So I appreciate their concern, but there's no way I would substitute an ultrasound for a CT - the ultrasounds I had at the beginning totally missed my OC.  I will discuss possibly substituting MRI's with my gyne onc when I get a chance.  

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@jobo ... geez what they did makes no sense especially when they knew you needed to be pre-medicated. These are the things that make you go hmmmmm. They also shouldn't in my opinion, be able to say you should have an ultrasound or MRI when they didn't follow the pre-med protocol from a timing perspective which could have led to your "break-though reaction". I am glad however that they said to discuss with you gyne onc. I believe they have a say in our treatment plans and can advocate for us. 

As for the 'oral contrast' I wasn't done drinking mine one time and the tech called me in for the CT. I said I needed to finish it and she told me that they give everyone the same amount and based on your size, you don't need you to finish it all. It was the first time I'd heard that. So strange how things vary.

As for someone saying to have either an ultrasound or MRI vs CT, there is no way an ultrasound is equivalent to an MRI or CT. I'm with you on that one. That to me was a bad suggestion on her behalf. Glad we have our oncologists to advocate for us!!!

#Treatmentandsideeffects

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It's not entirely clear what role the gyne onc has in advocating for us, at least vis-a-vis radiology.  I was told that the reason that both oral and injected contrast had been ordered this time was that 2 different radiologists were involved.  They said that the gyne onc simply orders a "CT of chest, abdomen and pelvis,"  and it's the radiologist who decides what kind of contrast is needed.  Apparently, the radiologist for chest is a different person from the radiologist for abdomen and pelvis; the second one will usually look at what the first ordered, and if it's suitable, will go with it.  In this case, they said, it didn't happen.  So when I arrived at my 1h40min early mark, the CT staff contacted the second radiologist and asked if the oral was really needed since the chest guy had ordered injected. And the result was to go with injected only.  

Interestingly, it's been about 5 years since I have had oral contrast, so when I got this order, I called the CT office and said, "Are you sure?", and they replied, "Oh yes.  That's what was ordered."  Then I called the gyne onc nurse and said, "Are you sure?", and she replied, "Oh yes.  That's what they want."  So imagine my surprise when at the appointment I was told it was simply because one radiologist hadn't looked at what the other radiologist had ordered and they didn't need them both after all!

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@jobo well I guess I'll find out when I speak to my oncology medical team at the end of this week 😁

I find it odd what they told you about the 'orders' vs the 'contrast decision'. All of my CT orders have been for Chest, Ab and Pelvis with contrast. For every I've had the pre-drink and then the i/v during the CT. The radiology tech is the only person there. The radiologist is 'on-call' in the event the tech has questions and/or if I have a reaction. It's strange how much variation there is in everything we encounter in our journey's. It can make your head spin!!!

#Treatmentandsideeffects

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@NovaScotiagirl 🤞

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