So, I had my second round of EC yesterday at 8am. By 10.30 I was in Intensive Care. 32 hours later, am now on a general ward for observation. I had an anaphylaxis reaction to my second of three red tubes of chemo. Similar reaction happened during my first round 2 weeks previous but that time they gave me antihistamine and carried on with EC at a slower rate. Had to stop coldcapping as well.
I am firstly upset that I will probably still loose my hair, it started shredding today but I know in the grand scheme of things it's OK, just seems a shame when I haven't had 2 out of 4 full rounds, hopeful that it doesn't all fall out. Anyone else had this experience?
My main concern is that they are talking about probably cancelling all chemo, which means not having 12 weekly sessions of Paclitaxel. Now don't get me wrong, I was reluctant to have chemo but after having a 14cm lump removed as well as all lymph nodes, 2 of which were infected, I have convinced myself that chemo is the only way to ensure my own best chance of cancer not returning.
Has anyone had a similar experience to mine with EC and what was the outcome, did they cancel all chemo or proceed with caution. I would love to he able to weigh up pros and cons before my consultation next Wednesday. I may not reply tonight as I didn't sleep a wink last night but will check tomorrow. Thank you for your support x
So sorry to hear about your extreme reaction. Hope you are recovering an got some sleep last night.
Whilst not hospitalised, I too struggled on EC on both my 1st & 2nd cycles, and I never really shook off the side effects during the weeks in-between and was very poorly.
I spoke to my team and oncologist and we all agreed my body wasn't coping with EC. So I decided to forgo the 3rd EC and move to 12 paclitaxel instead.
I was given an string dose of antihistamine before the paclitaxel - I wonder if this would be the same for you and would lessen any reaction?
Not sure what your treatment plan is, but chemo is one of several layers of treatment for me incl radiotherapy, abemaciclib and endocrine therapy to come. Because of this, he was even remaining flexible about the amount of paclitaxel incase I struggled on that too.
I'm glad I moved to it. On this drug, the side effects have been minimal and manageable so far .
I am still cold capping - not easily weekly, but I'm going to try to persevere. Hopefully you will be able to resume it if you do continue with chemo.
All the best for whatever decision you come to. I put my trust in my amazing team, and I'm sure yours will talk through all your fears and listen to your concerns as part of the decision making xxx
I just wanted to message to say I hope you’re ok. Like Nic said below they may give you other drugs to take to make pac easier to have. The team will do everything they can to ensure you have the right treatment. There’s so much more than chemo that they can use. Keep positive. You’ve been through traumatic time x
Ugh! Those tubes of epirubicin are hard to take and your experience sounds appalling. I would endorse what NicW says about paclitaxel delivered in 12 weekly doses and I hope your team will feel that it could be for you.
xx
Our treatment plans seem very similar. I’m now halfway through the abemaciclib …
On the paclitaxel I got the dose reduced to 80% as I was getting neuropathy in my feet, I was asked about it every time and the concern was not to incur permanent nerve damage. Anyway that worked out well- I agree that paclitaxel was much much easier to cope with than the EC!
I think that the 3 weekly paclitaxel is possibly harder to take, I’m unsure why you might get the 12,weekly doses or 4 x3 week cycles…♀️
Hi. I was told that the side effects tend to be less on the lower weekly dose of paclita than the stronger, 2 or 3 weekly doses.
I've had 3 of my 12 doses now and luckily not had any neuropathy...sorry to hear you suffered with it. I have started having mild nosebleeds and a slight rash has firmed on my skin, but I do suffer from eczema so it may well be that.
Hope you are getting on ok with the abemaciclib - I'm heard there can be side effects to that to? xx
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