Bad Reaction to Dose-Dense Taxol

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Starlo
Starlo Member Posts: 6
edited March 2018 in Chemotherapy - Before, During, and After

Hi all,

I apologize if there is an appropriate thread I could have jumped into, but I've done some searching and couldn't find one that specifically addresses my concerns. I had my first (of 4) dose-dense Taxol rounds a week and a half ago, and I literally thought it was killing me slowly for four solid days (it took me a week to feel close to normal and be upright for more than a few minutes). I wondered if I was allergic to it but know that usually true allergic reactions happen during infusion. I had terrible nausea/vomiting (threw up three times despite regular Zofran dosages), depressed mood (suddenly kind of hopeless and dark), chest pain, blue lips for a couple days, severe joint pain, severe heel pain, severe headache, and thrush in addition to the numbness in my fingertips that sounds like a normal reaction.

I was really surprised and disappointed to have such a bad reaction because I've heard from so many that Taxol is easier than A/C (which I tolerated pretty well and it never made me throw up). I had my infusion right before a holiday weekend, so my oncologist and his staff were not available (I was basically waiting until any of my symptoms became severe enough to visit the ER - but they eventually got better rather than worse), and by the time my oncologist was back in the office I had lost 10 pounds from not being able to eat/throwing up, but was starting to feel a bit better every day. I reported my symptoms to the nurse and got an Rx for Nystatin for my thrush but during my next appointment I want to make it clear to my MO how terrible this round has been and hope to collect any insight any of you may have into potential alternatives to Taxol/side effect management and to help me know what questions to ask. I see him Tuesday morning and my next round is Thursday afternoon.

I know some people take Benadryl with Taxol infusions, but I had Zyrtec (10mg one hour prior to infusion) - I wonder if Benadryl would be better for me? They also had me premedicate with dexamethasone (20mg the night before and 20mg 2hrs before infusion), which is probably responsible for the mood changes (?). The one other premedication was Pepcid (40mg one hour prior), which I tried a couple times for nausea (in addition to Zofran) after infusion, but it didn't help so I quit trying it. The only other factor I've thought I could ask about is the potential addition of olanzapine for nausea on days 2-4, as I had for A/C.

I'd love to hear thoughts or suggestions. Thanks all.

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  • Tewks
    Tewks Member Posts: 105
    edited February 2018

    I see that no one else has responded so I'll be the first and I'm probably the worst one to be saying anything at all. I had one Taxol and reacted so badly that my MO stopped all treatment completely. That was November 3 and I'm still feeling the effect of it. I had water retention issues that caused my ankles and feet to swell, totally different from what you're going through. Plus there was serious concern over the neuropathy I was developing. I'm kind of surprised that you sound like no one in your drs office was around during the weekend? Maybe I'm misunderstanding.

    I do know that when I had the DD AC I reacted a little differently with each infusion. Some were easier but there, again, I had an overall really awful time. We ditched the last of four on that one too.

    I hope you get some answers and do figure out a way to get through this...you've come so far already. Good luck!!

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  • Starlo
    Starlo Member Posts: 6
    edited February 2018

    Hi Tewks, thanks for responding! You understand correctly - it seems to be a Kaiser/Hawaii thing, but when the doctors are off, they are OFF. I was shocked the first time I had to go to the ER/after hours clinic for an Rx refill on the weekend. I'm so sorry you're still dealing with the effects of Taxol!

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited February 2018

    Not quite the same, but I had a very bad reaction to Taxotere and now my doctors say no more taxanes for me, ever. I had chest pain, fluid retention and leg swelling for months, polyneuropathy that caused pain like bee stings and difficulty walking, a weird contact dermatitis rash, and other stuff. For me Taxotere was bad from the beginning, but my reaction got progressively worse with each treatment. I still have some lasting effects from it. I have since done dose dense AC which was way easier for me. If I need more chemo they said it might be Xeloda.

    I think some of us are just sensitive to the taxanes, for whatever reason. It took a while for my MO to take me seriously - I think at first they thought I was being wimpy or dramatic, and it was only when I literally couldn't walk normally that they saw the red flags. That experience undermined my trust in my MO - hopefully you still trust yours! My point is this - you know your body, and make sure they are taking you seriously and addressing your concerns. Best wishes and I hope you find a solution that works for you.

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited February 2018

    so I am allergic to the solvent in taxol. The allergic reaction happens almost instantly. My first allergic reaction, I was like..."umm my stomach feels funny...somethings wrong, my arms and legs feel funny...help I can...not..breathe..." they had to shut off the infusion and double my steroids. Then, a few infusions later, I had a hypotensive reaction. My heartbeat instantly raced to over 200 beats per minute. I thought my heart was going to explode. They called code blue and everyone came running. They finally switched me to abraxane. No more issues. I'm sorry taxol is making you feel crappy..

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  • Mama1416
    Mama1416 Member Posts: 26
    edited February 2018

    I also had a very bad reaction to the solvents in Taxol. I first developed a rash on my hands, then infusion #2 my blood pressure went sky high. They switched my treatment to weekly Abraxane and I had no issues. Abraxane is the same drug bound with albumin. I also did not have to premed with steroids or anti nausea drugs. I'm sorry you were so sick for so long without any help from your team.

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  • Starlo
    Starlo Member Posts: 6
    edited March 2018

    Thanks for the responses all. We tweaked my meds (back to olanzapine and zofran the first 4 days, added IV fluids throughout the weekend to prevent dehydration when I'm nauseated, and I made sure to eat with the dexamethazone doses - which can apparently cause stomach upset by itself), and I am happy to report that this time went a million times better than the first. Just two more to go...

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  • Tewks
    Tewks Member Posts: 105
    edited March 2018

    Starlo I'm happy to hear you're feeling better. As I said earlier, I had one Taxol and was taken off all further chemo. I'm now 5 treatments away from finishing Proton radiation, which is a trip in itself.

    Good luck with everything and stay positive



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