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Allergic reaction to Doxil, my first ever chemo infusion

penpen18 profile image
20 Replies

Hi everyone,

Has anyone experienced an allergic reaction to Doxil?

Almost three years ago, I was diagnosed with stage 4 MBC. After being on hormone therapy for over two years, mostly IBrance and Letrozole, and then oral chemo for six months, my most recent petscan showed the cancer is still spreading.

I was to start my first chemo infusion last Wednesday. I had maybe 20 drips at the most and my body went into shock, first, I saw stars, then my muscles tightened across my back, then extreme heat like a blow torch was on my back, then chest tightened, throat tightened. I was hunched over and could only eek out "Yes" and "no" answers. I turned cold and gray. The nurses pumped me with 4-5 allergy drugs then finally administered an Epi pen.

The nursing infusion team was amazing. Nine were attending to make sure my symptoms got under control.

I'm to see an allergist next week but I'm nervous that they'll want to give me allergy meds and put me back on the same drug.

Has anyone had a similar experience?

Thank you for letting me share in a safe space.

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20 Replies
Iwasborntodothis profile image
Iwasborntodothis

I had an allergic reaction to Taxol not as bad but pretty scary like you described. After that, I took steroids the night before and they infused steroids and benedryl with pre-treatment before chemo. No problems after that.

penpen18 profile image
penpen18 in reply to Iwasborntodothis

Are you still having infusions?

Iwasborntodothis profile image
Iwasborntodothis in reply to penpen18

Yes - I'm doing trodelvy now and I still get steroids and benedryl as pre-meds

penpen18 profile image
penpen18 in reply to Iwasborntodothis

Thank you. Curious, any side effects?

Iwasborntodothis profile image
Iwasborntodothis in reply to penpen18

I have a ton of posts on Trodelvy of thats what you are asking. No allergic reaction during infusion. The benedry knocks me out while we are there and the steroid makes me an OCD mess for a day after - YAY

penpen18 profile image
penpen18 in reply to Iwasborntodothis

Thank you so much for explaining.

LibraryGeek profile image
LibraryGeek

That must have been so scary for you! Hopefully they will sort this out for you quickly and either try a different drug or deal with this reaction. Sending hugs x

penpen18 profile image
penpen18 in reply to LibraryGeek

Thank you

Totheriver profile image
Totheriver

So sorry you had to go through this scary reaction. I have never expierenced it but have seen it happen. Hope things go well for you💕

penpen18 profile image
penpen18 in reply to Totheriver

Thank you

Khoya95 profile image
Khoya95

Honey, never had this, but it must have been scary. I hope you get to voice all your concerns to them and get the best care. All prayers and wishes.

penpen18 profile image
penpen18 in reply to Khoya95

Thank you.

mariootsi profile image
mariootsi

So sorry you went through such an awful experience. We never know how these treatments will effect us. Glad you are ok. When I had taxol they gave me steroids. I don't know if they would help you or if they need to change your treatment. I wish you the best

penpen18 profile image
penpen18

Thank you. I head to the allergist tomorrow before they proceed with any treatment.

Cherry38 profile image
Cherry38

Hi LovelyI am so sorry you experienced this, I had an allergic reaction to doxorubicin my first IV chemo. I was pumped with all sorts and I was put on a ECG machine. My face swelled up and I couldn't breath well. They were amazing the nurses, but it did cause future anxiety.

The second cycle I was to take tacidine and claratyne day before, on the morning and day after. I was then sedated on the day and more pre meds given through my cannula.

Unfortunately after 3rd cycle my cancer has spread into both lungs and more in my liver, so I start Trodelvy on Friday.

I asked if I should continue on the meds, but they want to see if I will have an reaction first. I will be sedated a little, which I hate.

They will keep you more monitored now, which I found comforting and I am always sat near the nurses station.

It's good you are having an allergy test just to check. I am sending hugs lovely and know the nurses are on top of it, I am sure you will be ok for your next treatment. Always tell your medical team how you feel though. Keep strong 💗💗💗

penpen18 profile image
penpen18 in reply to Cherry38

Thank you so much. Are you Stage 4 and is this treatment going to continue until it stops working? That's what I was told about the Doxil. How long have you had cancer, if you don't mind me asking? Did you have any of the side effects to Doxil? I'm sick of feeling bad when the bottom line is these drugs do not radicate the cancer. It slows it down...hopefully.

Cherry38 profile image
Cherry38 in reply to penpen18

Hi lovely. I was diagnosed in Sept 2022 stage 4 denova at 49. I am starting my 5th line of treatment on Friday of the Trodelvy.

I have been told to get my affairs in order and make memories with my children.

Unfortunately every scan, I have had progression and this last treatment didn't work at all, as now it's in both lungs and more in my liver. I have mets in most of my spine, one in the skull. Right ribs and right hip.

But I am not giving in, I will exhaust every avenue.

The doxorubicin wasn't too bad for side effects first few days were hard with sickness and a bit of diarrhoea but after taking the sickness and gastrostop it helped heaps.

I have been quite lucky with side effects, but then again i haven't been on anything longer than 3 months.

I have been on two clinical trials as well. I

I was diagnosed er+pr+ her 2 negative and started on Riboclicib and Lextrozle then they found I had the pik3ca mutation so I went on two clinical trials and unfortunately got progression.

I pushed for a second biopsy which I had in my hip and I am now TNBC. My cancer is very aggressive and for it to change has been baffling but not uncommon.

I have had radiotherapy too and an oophorectomy.

It is an exhausting disease, but I promised my children, they are teenagers I will exhaust every avenue possible. I am sorry you are going through it too, I was feeling really down the other day but the ladies on here gave me such a boost. It's a great community to be yourself and ask questions. When do you have your next treatment? Most treatments you stay on until there is progression or side effects are too much. Positive side though when they work well, then remission is possible. I know a couple of ladies are in remission and it's marvellous. I am still aiming for that. There are so many treatments now and still trials are being tested. I look at as a chronic illness and I will be on treatment for ever. We got to keep on keeping on. Stay strong lovely. Here if you need to chat 💗💗💗

SoulJourney profile image
SoulJourney

Hello!

I am so sorry you experienced that, I too have just started Taxols . This is my week off but Feb 9 was my first treatment. I had an allergic reaction got hot and sweaty all over and my husband got the nurse.

By the time they were in the room less than two minutes my arms were itching and I was ready to rip my lips off! Lots of drugs were brought on board fusion, oral and they pushed something as well. I rested for an hour and we tried again but slower. I had another reaction but we got 90% in before I did.

The end result was switching me to Abraxane, taxol family but I think it is bound to a different protein compound.

I am tolerating it so much better and there are less premeds.

Good luck with your next steps! Don’t give up hope. I was so worried about the taxols and now after 3 infusions I am so hopeful this will be a long ride for me!!

Hugs

Tammie

penpen18 profile image
penpen18 in reply to SoulJourney

Tammie, thank you so much. I so appreciate this forum and people’s honesty.

penpen18 profile image
penpen18

Hi everyone, Thank you all for your responses to having an allergic reaction to DOXIL. It helped. It can get very lonely and sad dealing with cancer, even when you have great surround you. Last week, I met with an allergist who walked me through the infusion and how it would be spread out over six hours versus 1 hour. Yesterday, I got my first infusion of DOXIL in what Dana Farber calls the Desensitization Clinic. I'm not going to lie, I dreaded the thought of doing it all weekend. But, in the end, I didn't have any allergic reaction at all. The nurse started with a prescribed cocktail mix of allergy drugs and a couple that had a lovely side effect that made me sleepy. I am scheduled to return to the clinic in four weeks for my next infusion....so knock on wood, back on track.

Again, thank you for your support and encouraging words.

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