Hi lovely ladies. Hoping you are all ok and keeping strong.
On Thursday I had my third cycle/ second line of taxol and carbo. All was fine till the carbo went in. After ten minutes or so I felt awful. Very light headed, I was violently sick, boiling hot then freezing cold. My eyes swelled up and my blood pressure dropped. They pumped me with hydrocortisone, saline and a few Piriton and I started to feel ok. My friend was with me and she got very upset. It wasn’t pleasant. I went to work the next day but they sent me home as I looked tired. I guess I was.
I have to see my oncologist now to see what he decides to do about the carbo this was the ninth time I’d had it in total. Strange I reacted so badly.
I don’t know whether they’ll try it again or something else maybe cisplatin.
Scan yesterday too. 😟
Onwards and upwards.
Love to all you amazing ladies. Xxxx
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Suzanne333
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Wow - that's an extreme reaction but thank goodness you were sorted pretty quickly and are all right now. I don't know anything about reactions to carbo as thankfully I haven't had one to that, but I've another 3 weeks to go. Let's hope you can tolerate something else.
Thank you Suzanne. I'm rather anxious about finishing really as the lymphs under my arm haven't changed at all this month and another has appeared. I'm going to pluck up the courage to ask for some low dose taxol for the last three weeks. I know I was hospitalised when I had it the first, and last, time but surely a low dose won't have the same effect. It is affecting my state of mind just having carbo/avastin. I am rather down at the moment and it's my birthday tomorrow and I've got people over for lunch and all I want to do is cry and hide away. Not like me at all. Don't know how to buck myself up if I'm honest. Still, won't know anything for sure until the next PET in January. Time to be depressed then.
You stay well now and don't go giving your friend any more scares. We are not allowed companions in chemo because of germs. The french are so fastidious about germs that sometimes I think they take it a bit too far. When I was in hospital my room was totally disinfected every day. I felt as if I had leprosy or something but they do it to all the rooms. They are constantly squirting and cleaning things. Still, better safe than sorry I suppose.
Love Kryssy - who really wants some sleep but it won't come......
Oh Kryssy. I can totally understand your anxiety and why you feel so low. I’m sure they’ll allow you low dose taxol. It’s your body and your illness. Demand it.
This disease we have is relentless. It’s bloody hard to deal with. I get where you’re coming from.
I’m thinking of you and always here if you need to talk
In my mind a reduced weekly dose is a third of the amount you would get if you were having it 3 weekly. Would you say that is low dose or something else?
Whatever - discuss taking additional oral meds around treatment days, and most importantly ask the nurses to drip slowly. On my 16/18 th this week ( after strong reaction to the full whack on first round a year ago) . Every week I am given it 1/4 rate for 15 mins then 1/2 rate for another 15 mins and checked very carefully before I go full rate...
So far n problems... except I am so medicated up I crash at the weekends, like now!
Good morning Suzanne, so sorry you had bad reaction to carbo, I'm sure they will sort something for you, have you met the new oncologist in broomfield? He seems very nice and caring, although I missed the lady oncologist. She was brilliant. Your so brave to go to work so soon. Take plenty of rest and you take care my darling. Hope to see you soon when your up to it. We don't live that far from each other so I'm sure we will one day. Take care. Lots of Huggs .xxxx
I have met the new oncologist. I thought he was very nice. I have to see him again soon about the carbo reaction and scan results.
I hope you are doing ok. Would love to meet soon. Will have to find the time as it’s such a busy time of year and then having chemo etc. Think I need a good holiday in the sun.
Gosh, that must have been so frightening. Once a lady opposite me had a similar reaction and suddenly as if from nowhere there were lots of nurses around her bed, quickly followed by a doctor.
You must have been really shaken up. And your friend, it’s very often harder for someone to watch someone else’s suffering, than it is to experience it yourself
Was the Carbo continued but slower, or did they discontinue for that day?
It was scary. I did have many staff around me. I couldn’t move. The nurse had to hold my sick bowl. My head just flopped sideways. If they’d said walk 5 steps for a million pounds, I couldn’t have done. It was scary. I’d pulled my bandana off as I was so hot. My poor friend just sees her bald friend in a right state. I guess it looked frightening.
They stopped the carbo. Said I couldn’t have it again. They’re making an appointment for me to see my oncologist. Will see what he says.
Suzanne I’m really sorry this happened to you. Same thing happened with me, also on 3rd dose of second line, with carbo. It’s not something anyone can get their head round until it’s happening to them.... in my case I had to go to the loo, right then, so the nurse came with me.... and had to stay in the cubicle saying “I’m sorry, I can’t leave you alone”. That was nice and cosy. She has become a special person in the treatment room since then and we always meet up when I’m in (was in, should I say as now treatment is finished). Anyway the point I’m trying to wimble round to making is that I then we t into a panic about not being able to have carbo again. BUT I was, just had to have it as a desensitised regime, so over longer, with tiny amounts building up to a larger dose. It made for very long chemo sessions but I never reacted badly again. I never stopped worrying, especially when bag #4 came online with the most carbo, but it was fine. So try not to worry, they have ways and means of getting round this sort of thing. Take care and rest easy, you need to get over this and it takes several days.
Oh I’m sorry you had to go through it too. It’s horrible. Does make me scared to have it again but I’m sure they’ll do it slowly. It’s strange that you reacted to it the same cycle/line that I did. I’d never felt so ill. They asked if I wanted to lay on the bed. I said I can’t walk they said they’d push me in the chemo chair. I said no. I just couldn’t move a muscle. Once they got me sorted, I drove home and went to work the next day. I just make myself keep going but today I’m going to rest.
I’m fine Suzanne. I totally understand how you must have felt. Actually, maybe not totally because we are all different, but it is as if you think “this is it, goodbye cruel world” and I remember the staff sister, who has the face of an angel, called Esther, looking into my eyes and saying “you will be alright, don’t be scared, we’ve got you”. Give yourself time, seriously, it’s a trauma and you need to let your body get rid of all the cortisol etc.
That’s exactly how it felt. The male nurse I had was so lovely. He said “it feels like you are dying”. I said it did. You get this feeling of impending doom. Horrible time.
Hi Suzanne, I understand how frighting it is I don't have a reaction to carbo but to taxol like you I was with my daughter when it came on so fast my poor daughter started screaming out for help the nurses were fast and had me stable in no time, arfter that I still had taxol but very slowly one dose was in hospital over night, I slept with the nurses buzzer in my hand all night encase of a reaction.
Maybe your team will suggest a slow injection if not I'm sure they will came up with options.
Take care wishing you a merry Christmas and new year full of great news Lorraine xx🎄🎄
Sorry to hear you had such a horrible reaction, it's really scary. Maybe ask if they can slow the drip down. I've had two anaphylactic reactions this year, one to Paclitaxel and one to Docetaxel and I'm now managing Docetaxel through a desensitized regime, so there is hope xxxx
Suzanne, So sorry to hear about the reaction I am sure it must have be very, very frightening. HOPEFULLY, your oncologist will come up with an approprien ate plan. Perhaps with a reduced dose of the Carboplatin. Thinking of you Chris
My poor daughter had to witness me having a reaction to my second Taxol - it was frightening, but the crash team intervened immediately and I felt relatively safe throughout. I was rechallenged after steroids and Piriton (after about 39 minutes) and was fine with the remaining Taxol doses.
I guess they have to take everything into account when they decide what to do next - mine was a recognised problem, always in the first or second cycle and always within the first 10 minutes, so no surprise to them. Yours sounds like it was unpredictable although all of these drugs must have the ability to bite us on the bum.
I hope your scan results are good, and that the consultant can offer you a solution that you are happy with.
Aww thank you. Yes it’s scary. My poor friend was in tears. It upset her. It’s horrible for us but it’s horrible too for those close to us. This was my ninth time with carbo so it was a bit of a surprise that I reacted like that. I’m sure my oncologist will have a plan.
Oh Suzanne--that was so frightening! I am so glad you are better and even went to work the next day (or tried!) Interesting (now that its over I can say that!) because my nurses kept saying they had to watch for reactions on treatment #7 and #8 and I couldn't understand why they would say that when I was only supposed to have 6 total till I realized (and they confirmed) that #7 is #1 for 2nd line. So now I wonder why they only said #7 and #8 when you obviously had your reaction with what would be #9 (which I have 12.15).
Just wondering--they make me take 5 steroid pills the night before, then 5 the morning of, then they infuse steroied and told me I cannot stop this preparing for treatment day due to possible reactions. Do you do that as well in preparation? Probably not if no more Carbo? Don't think they will hear further arguments from me after reading what you went through, poor thing.
I hope things are sorted out and you can continue treatment without a big hiccup!
Ahh thank you for your message. It was so scary. The poor male nurse told me you feel like you’re dying. I did! I could hardly talk I couldn’t turn my head to be sick , it just flopped to the side and the nurse had to hold the bowl. My blood pressure dipped and they panicked a bit about that. I didn’t know but my friend told me.
I think they can desensitise you against this happening again but I guess that’s in the hands of my oncologist. I’ll see what he says.
Yes it was my ninth carbo overall. I’ve always dealt with it so well. Perhaps I’ve had too much of it. Only had eight months remission from first line.
Hi Maxjor (and sorry to butt into your post Suzanne)
I'm interested in the amount of steroids you have. I've noticed everyone seems to have different amuonts. I take an Emend on chemo day, 125mg, which is supposed to be anti sickness, and it is, then I get a bag of something first at chemo which they say alleviates side effects. Don't bother to ask the name. Then carbo, then avastin and then a bag of something to make me pee all flipping night to get out what's just been pumped in. I then have two more days of Emend 85mg with two steroid tablets and then I stop with both of them. Perhaps because I'm on weekly carbo/avastin only it's different. Doc gave me antihistamine for avastin pain but I don't take them as once I knew what the pain was caused by it didn't seem so bad anymore. I don't really know what the steroids are supposed to do. Numpty me doesn't like using google much - too scary.
Thank you in advance for the question and sorry if I have veered off your post a bit Suzanne.
HI Kryssy--I am FINE with you chiming in--can't imagine Suzanne minds! Also happy to give you my personal email if you would like.
So they tell me the night before (they specify time! at 10PM) I take five (5) 20mg (or is it .20) steroid tablets (then of course need something to sleep which I have), then two hours prior to treatment another 5 tablets of the same. Bouncing off walls now (actually just makes me talk alot which I TRY not to), then they infuse the same in liquid form during treatment prior to the Carbo or Doxil (I can ask how much as I have not) THEN to get me to not be nauseas after (to avoid the "crash") I am told to take two tablets on Day 2 post-treatment, 2 tablets Day 3, one tablet Days 4 and 5. I do, but I was still nauseas. I called and they now added Compazine to the mix (after treatment) and I posted this on my other on-line support group (here in the US since we seem to all take similar meds) and many told me the Compazine not only worked better for nausea than Zofran but it had NO side effects (no constipation, etc.). Just makes them sleepy.
My understanding is that steroids given immediately PRIOR to treatment suppress the immune system to avoid the allergic reaction or to minimize it and the ones given after help not to crash which I believe can make one feel sick or nauseas. I prefer NOT to be on them but if it helps, I will do it and I do. Let me know if you need more info on this and I will look carefully at dosage etc.
That is really useful. Thank you. I'll ask my nurse Tomas on Tuesday if one of the bags is steroids. He's said it is to stop side effects. I've got Prednisolone maybe the french spelling, aka Solupred. 20mg tablets which I have to dissolve in water. When I was on 3 weekly (only for 2 sessions) I used to take the steroids the two days after but an extra half tablet - 2 and a half - but never after that. Now I just take 2 for the two days after. Nothing else. I was also given Azantac to protect my stomach from ulcers but after all my reactions it was decided that all meds would stop as they just make me so ill. I'm au naturelle now - but with clothes on. Virtually no side effects with carbo/avastin. None that floor me anyway.
I wouldn't mind a bit of a puffy face. I've lost that much weight that my face is like an underground map (or would that be the subway for you?).Thank you for taking the time to reply. I need to ask more questions. I can see that now. Sadly it will be Tomas's last week on chemo ward. He'll be on geriatrics from then until February. I'll probably be there myself in a few weeks too......
It was quick and my whole body just seemed to try and do everything it could to get that carbo out. I heated up then went freezing cold. My eyes puffed up. I was bright red all over. Couldn’t stop being sick. Hope to never have a repeat of that.
I had my scan yesterday so I hope to see my consultant soon. I’ll need to see him about the carbo reaction too so hopefully he can do both with the same appointment. Xxxxx
I had the same reaction after my forth infusion of carbo., and gemcitabena. so had to have it taken out of the equasion. I was fine my first line of taxol and carbo but seams I can't have it at all now, I am currently on Caelyx and having all sorts of issues with that and have had my 5th dose reduced to 50% I was 12 months stable after my second line (carbo and gem,) so even without the carbo things went well. hope you get sorted, but don't worry about having to have the carbo stopped. good luck. xxx Jeanette
Sorry to hear your having such a tough time with reaction to these drugs. Really hope they can sort something out for you next time. Best wishes, Jo xx
Oh Suzanne, how on earth are you managing to go to work on top of all that? Let's hope that's the end of bad reactions. I'm sure they'll sort something out for you. In the meantime rest up and relax a little and build up your strength.
I don’t know how I went to work. I guess I don’t like this wretched thing getting the better of me. They sent me home but I went to the staff Christmas meal in the evening.
I’m resting now. I do think it’s all caught up with me.
Hope you are doing ok Zena. Big hugs to you. Xxxxx
Hi Suzanne, how horrible for you. One of the worse sensations for any one is an anaphylaxis shock or severe allergic reaction. The feeling of impending doom is truly horrendous I’m full of awe that you went to work, your body needed some rest instead though. Please take care of yourself
Hi Suzanne. I had a similar rejection of carbo, second line third dose. They tried again next time very slowly and it was ok but the following time, I reacted instantly. You’re right it’s very scary for the poor person with you, in my case my sister. I was just out of it for a while. After that, I moved to cisplatin/taxol for next three sessions which was ok. To be honest, don’t know if cisplatin is tougher or whether it was the accumulation factor, but felt rougher on the bad days. Sending you lots of good vibes and hugs Jo 🌼🌺🌻🌹🌸
Same as me. Second line , third dose. It is scary. I’m thinking they might try me on cisplatin. The staff in the chemo suite said I can’t have carbo again.
So sorry you had such a bad reaction to the carbo. My onc. told me that the carbo can effect you over time and can happen suddenly. Sounds like you had a allergic reaction?
I recently was diagnosed with PPC and everyone keeps telling me to stay off the Internet, don't Google things and stop listening to other people stories because it's going to scare you. Point being, I'm starting chemo next week and it is taxol & Carbo. So reading this thread of all bad reactions is definitely a little freaking me out.
I happen to have bad anxiety and one of my biggest fears is taking any medications because I fear the reaction. I suffered with anxiety for 15 years before I gave in and took a pill to help relieve it. I'm terrified of reactions to simple meds and now you're talking about chemo! God help me I don't know how I am going to get through this .
Elaine, I, too, was diagnosed with PPC last May. (It turned out to be ovarian, but they didn't discover that until I had surgery.) In any case, I was so much like you; barely took an aspirin no less all the drugs that come with chemo. I also suffer from anxiety, and I can definitely relate to what you are going through. I am now about to start cycle 8 of chemo (carbo/taxol) and I have never had a reaction, I'm pleased to say. The only suggestion I have is to to be brutally honest with your medical team about your history and your fears. As time went on I was able to reduce the amount of steroids and other meds (with my doctor's approval of course), and that really helped. The beginning is the worst because it is the great unknown. We've all been there, and you will get through it....one day at a time, one treatment at a time. You can do this! Keep us posted.
Easier said than done, but try not to worry! We share and discuss a lot of our fears on here because it’s comforting to realise other people have been in our situation. What we don’t always post is when things have gone well, or every time we *haven’t* had an allergic reaction! There would be far more of those posts if we did. I’ve just had my 9th dose of carbo, and it was absolutely fine. No reactions, nothing noteworthy.
Definitely talk to your onc or CNS about your fears. They will be able to help.
Thank you too for your comforting words. I guess your right, we all tend to discuss the bad over the good, which is why we share. I a sure there are more good outcomes then bad. I will surely tell my Onc about my fears!
Sorry that you had such a horrid time with the carbo. I am amazed at you being able to go to work at all! I just sat on the sofa during chemo and still can’t even think about work -and I love my job.Hope your onc comes up with something new.
It was a horrible experience . I think I was just determined not to let it keep me down . They sent me home from work in the afternoon but I went to the works Christmas meal in the evening.
I’m off work now for a week. I always have the week after chemonoff work although I’m not feeling too bad today.
Oooh, scary! So sorry you went through this! I'm about to start my 8th cycle of carbo/taxol, and so far so good. I guess we never know when it might hit and the body just says "enough!" Let us know what they decide to do, and so glad you're okay.
Sorry to hear about your reaction to carbo. I have not had any yet to carbo but i did have one to bolus anti biotics where i suddenly had chest and tummy pains and passed out. I had the hubby running to get the doctor and after some meds returned to normal. It is scary for people watching you. You are strong and brave and positive. Keep your spirits up. Take care.
How scary for you. We all think we will be ok if we've had it so many times and were fine. Just goes to show.....i cant believe you went to work. Im sure you were exhausted. Good luck with your scan. Im off for my second cycle/second line today xx
Wow! That sounds really awful, Suzanne. I hope they come up with a plan for you. I had a bad reaction to taxol, but was fine with docetaxel instead...go figure! Fingers crossed your scan shows good results so far.
Hi Suzanne I won't scare you with all the details of the reaction I had to Carbo suffice to say if I was in your shoes I'd switch to Cisplatin if offered, it's harsher I know to tolerate but you don't want a reaction like I had - although to be fair I was out for the count for just over an hour and don't remember too much. I think the nurses/doctors and other patients suffered more than I did. Hope you are ok xx
I didn’t have such a bad reaction as you did but it was scary. I could hardly speak and couldn’t move my head. Very frightening experience. You must have had a really severe reaction to be out for the count. It does scare the people around you.
I’ve heard of cisplatin. I didn’t know it was harsher. 😟 don’t want that carbo again though if that reaction was to recur.
Im doing ok. Cisplatin is harsher, well I found it to be , but totally doable, and I had it for part way through first recurrence and again for the second. Hope you get this issue resolved xx
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