I was on Afinitor and developed an allergic reaction
(Mouth started swelling.
I took some time off and just started Ibrance . Only three days in and my lips started to swell again. Onc says stop Ibrance
My onc wants to send me to an allergist. Has anyone had this happen to them?
Sounds awful. Hope you get sorted. So strange how meds affect us all in different ways.
Ruth
I'm sorry your dealing with this Shelby; it's hard enough to feel positive starting a new treatment without having to stop it so soon. It seems that mouth or facial swelling can be side effects of both drugs. Since you were also sensitive to some scan contrasts, an allergist does sound like a good idea. Finding out about food or environmental allergies can help your overall healing too, so your body doesn't have to work so hard responding to allergens. I hope you can find relief!
Thank you all for responding to my concerns regarding allergic reactions to chemo pills (Ibrance and Afinitor)
I see the specialist on June 16 . I will keep you all informed. Thanks again Shelby
Yes unfortunately
I developed rashes that are hives and had to see an allergist. Told me take Allegra 180 twice day and if I continue ibrance n faslodex will have to take steroids for few days. I just had pet scan so don’t know what will happen now. Also have to take Benadryl- it sounds ridiculous but if drugs are working then I have no choice. Good luck. I know how hard this is; this disease is a bitch. Sending you hugs n love
♥️Frances
I have barious allergies to food and chemicals. I think its a good idea to see someone who can find out the exact chemicals causing the reaction as they can then be avoided and give you reassurance when you start new drugs.
Keep us updated.
X
Hi my name is carol and I’m on ibrance and letrozole this is my third month the first month I had problems with my scalp it would get so hot and sore I had to put ice packs on mentioned this to the onc and she said she didn’t know what it was and had never heard of it . Second month not to bad sore mouth and lip sores . This month my skin mainly upper arms on fire swollen,sore and itchy same as my head was also on legs again onc said she didn’t know what it was yet again .When my body gets too warm my skin hurts and prickles I feel I could crawl out of it.I feel I’m moaning when I see my onc so I’m not going to bother from know on she’s not listening in any case . The only consolation is your not alone .We will get through this .Love and hugs and hope you improve soon .
Your onc needs to listen to you! Maybe you might want to think about finding another one. You should be able to report side effects and get relief!
Hi Carol
Don’t let anyone shut you down for any reason. You will find many of us have to be very strong advocates for ourselves and keep pushing. I have had rashes since January. I saw my primary doc and he did nothing. My onc just looked. It wasn’t until I got angry and forceful that my onc sent me to an allergist who basically just looked and said it was hives and take Allegra.
Right now I am nervous- had pet scan Friday. I am going to re-think everything once I get results.
I know the healthcare system is different in the UK but there are others on here who live there also and can guide you. This fight is on every level on our being and it is normal to get down and discouraged. Don’t let it keep you quiet. We are all here for you.
♥️Frances
Thank you for your encouraging words .I am having a down day today ,tomorrow ‘s another day.
I have a history of allergies from the time I was tiny. Some of my earliest memories are of getting Benedryl shots at the ER! What you are experiencing would send me to the ER! Seriously, we can't ignore possible allergic reactions! They can lessen or increase over time and more than one person had died from drug allergies! Plus often, the ER can be the fastest route to scans, blood work, etc. And for everybody--PLEASE DON'T PANIC IF YOU CAN NOT TOLERATE IBRANCE OR AFINITOR! Alot of us were diagnosed before those new meds were available and still did well on the aromatase inhibitors (Femara/Letrozole, ARimidex, Aromasin) or Faslodexl I was diagnosed in 2004 and got almost 5 years from Letrozole (Femara) and then over 9 years on Faslodex. We tried adding Ibrance to the Faslodex, but it did damage to my lungs and I now have to use two different inhalers and can't tolerate humid weather well. I don't know how good a job drug companies and the FDA are doing in getting info on the frequency of severe side effects with these newer drugs. My own experience with Ibrance certainly gives me a bias, but my onc immediately new that Ibrance was what was causing my breathing issues and referred me to a pulmonologist who also immediately said that Ibrance was the culpret.
Thank you for your information I will certainly take it on board.Take care and God bless .
Shelby, so sorry you have to go through this. These meds can cause so many side effects. Sounds like seeing an allergist will help.
Hope your problems are resolved soon.
I’m in the Uk and it’s not that easy you seem to get what your given and there doesn’t seem to be options for oncs.
No I haven’t. Affinitor gave me terrible head aches but no allergic reaction. There must be something in both of them that you can’t tolerate. Hope you get it figured out.
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