Concerns about Axumin Scan allergic r... - Advanced Prostate...

Advanced Prostate Cancer

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Concerns about Axumin Scan allergic reactions

agyoung profile image
10 Replies

Hello all,

Looking for some information on having an Axumin scan. I have one scheduled for April 1 due to rapidly rising PSA.

I had a bone scan and CT contrast scan at MD Anderson and went into anaphylactic shock. The attending physician was obviously shaken by the reaction and after about 6 hours of observation and large doses of IV Benadryl he told me to never have another contrast CT scan as it would likely kill me.

I have researched many pieces of information on the Axumin tracer and find conflicting information. Some say it has an iodine component to it (the manufacturer being one) while others including my oncologist say it doesn’t and I won’t have a problem.

Would anyone have any anecdotal or qualitative information?

Thanks in advance.

agyoung757

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agyoung
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10 Replies
Tall_Allen profile image
Tall_Allen

Axumin (fluciclovine) itself doesn't have iodine, but it is always given along with a CT scan, which can include iodine. If they leave out the iodine contrast agent, they can still do the CT without it. There are a handful of PET/MRI machines in the US. If you live near one of them, you may be able to get on their waiting list. MRIs use gadolinium for contrast.

agyoung profile image
agyoung in reply toTall_Allen

Thank you for the very quick reply.

They were going to do the CT scan with contrast and give me a round of prednisone to counter the allergy. That didn’t work the last time so I will make sure they don’t use contrast for the CT portion.

Thank you sir for the information. You are a very valuable asset to this group and I think I speak for all when I say thank you.

agyoung757

Lucky you pulled thru ! That’s crazy . No mo ct with iodine for you .. glad you made it😂

pilot52 profile image
pilot52

I assume you scan was clear ? is this why the PET is scheduled...?? Curious and what is your PSA...Just had my second PET in the last 14 months and PSA was 3.98 and 4.23 and both scans were clear....If your PSA is really low do they expect to see something had my second scan because Xtandi initially dropped PSA down but it doubled the last 6 months....Blue Skies...

Olivia007 profile image
Olivia007

Just a word of warning that test is not being used anymore in my state my father had it done April 2019 and they realized that it’s not really that useful or helpful with men with prostrate cancer

Olivia007 profile image
Olivia007

Just a word of warning that test is not being used anymore in my state my father had it done April 2019 and they realized that it’s not really that useful or helpful with men with prostrate cancer It showed he had nothing and then when they did a pet scan the pet scan showed more areas of bone Mets so just a word of caution

Olivia007 profile image
Olivia007

Just a word of warning that test is not being used anymore in my state my father had it done April 2019 and they realized that it’s not really that useful or helpful with men with prostrate cancer It showed he had nothing and then when they did a pet scan the pet scan showed more areas of bone Mets so just a word of caution

agyoung profile image
agyoung

Thanks for all of the responses from everyone.

A brief history-

An airline pilot who has to see his FAA doctor for a physical every 6 months. Never have anything wrong when you go because loss of medical means loss of career.

I had a recurring sinus infection at the end of 2011 and randomly picked an MD out of the phone book. Since he had never seen me he wanted to do a general physical. I had not been getting PSA tests as prior the FAA required a DRE. The MD performed the exam and DRE. He immediately drew blood for a PSA test and sent me home to wait for the results. He called several hours later with the PSA of 68.15 and an evaluation of the prostate being the size of a grapefruit and almost granite like in composition. He made a call to a urologist who I saw that evening. Things began going downhill thereafter. After consults with the urologist, visit to a well know Surgeon at Tulane (Dr. Benjamin Lee) the decision was made that I was inoperable. Biopsy showed Gleason 5+4 in all 12 cores with 7 of the needles bent. Is ADT would be given (Casodex and Lupron) and that was it. Several days later I got a call from the surgeon who decided they would do the RP because the prostate was such an extreme example they wanted to dee it. RP was done, 7.5 weeks of radiation. PSA went from 2.56 to 4.88 in 3 days and they said 18-24 months so get everything in order.

PSA began very slowly going down monthly due to the ADT an becAme undetectable after 2 years of ADT. T never recovered and stayed at 11 ng/dL for 3,5 years. Oncologist at Tulane (Dr Oliver Sartor) suggested a year and a half ago that I might want to consider T replacement (Androgel).

Confused why he would want to upset the stable Apple cart, he brought his staff in to the room and explained that they had known very well for 7 years and that unbeknown to me I had zero QOL. He asked me would I rather have possibly several years of QOL or perhaps more being absolutely flat.

I decided to try it and have been using Androgel daily since.

PSA remained undetectable for 4 months while total T was above 400. Then the PSA began rising 0.1 monthly like clockwork.

Bone scan and CT scan at MD Anderson showed no Mets. The oncologist I met with asked me why was I here as Dr. Sartor was my oncologist and they couldn’t do anything better than he.

But Dr. Sartor now wants the Axumin scan as a baseline even with a relatively low PSA.

Sorry for the lengthy diatribe. I’m not a coffee drinker but my wife read an article that 4 cups of coffee a day has shown some success with PC. It certainly makes me blather on!

Thanks again.

agyoung757

j-o-h-n profile image
j-o-h-n

Well thank you for your history..... you may wish to cut and paste it in your home page for future reference by you and by members. Keep the wind at your back and keep posting here for more information and camaraderie. I think they meant you should bathe in the coffee, don't drink it.....Lots of that "cure" stuff floating around. Stay well and stay happy....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/25/2020 9:13 PM DST (Greek Independence day)

agyoung profile image
agyoung in reply toj-o-h-n

Thank you j-o-h-n.

I have always enjoyed your inputs and good humor!

agyoung757

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