Taxol Complications

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Susan05
Susan05 Member Posts: 20
edited March 2019 in Chemotherapy - Before, During, and After

Hi All!

I started Chemo in November. I started with 4 total DD A/C administered every 2 weeks. Then started immediately on 12 weekly Taxol. While AC was rough it wasn't too awful. My oncologist told me that I did so well with AC that he believes that I will breeze through TaxoI. After my 2nd infusion I started having body aches way worse than those that I got from Neulasta. Each one got worse until I was laying down all day in agony. Every part of my body hurt from my skin, muscles, space in between muscles, my joints throbbed and felt like someone was stabbing them with electric knives. I swear hair that I don't even have hurt. I tend to minimize things and realize that I did when describing it to him at first. At the time he said it's Neuropathy. One of the questions that they always ask is do you have a cough. I told them that I have a cough when breathing deep but it doesn't produce and it wasn't too bad. oh boy.

Last week it got so bad that I ended up going to the ER on Friday 3/1. I could not move an inch without coughing and losing my breath. Good news and bad news. Good news is they did a CT scan of my lungs and they get the breast tissue in the scan. They compared it to my scans done in November and the tumor is no longer visible. (yay!) Bad news is I have Pneumonitis with Microgranulations. Nice. My oncologist said that my scans from November showed beautifully healthy lungs and my scan from Friday is pretty bad. We went over them together and and they do look bad. He said looking back with the pain that I've been having he believes that I was having an extreme inflammatory response everywhere to Taxol. He said he's never seen Taxol induced Pneumonitis in 30 years but his colleague had and her patient didn't tell her right away and ended up in the hospital on a ventilator. He immediately stopped treatment and said that most likely I will not be getting any more Taxoteres. They want to move surgery up and I saw a pulmonary specialist yesterday. They will discuss and my oncologist is bringing it to the tumor board to discuss this week.

I'm a little (lot) freaked out about stopping taxol at 6. He said that if they find any live cells during surgery then I will most likely go on Xeloda. I worry about live cells that got through!! ugh. I thought I had this! My mom died of breast cancer in 2003, I think she was originally stage 1 and it ended up coming back 5 years later in her back and elsewhere. So I worry about what could have gotten through. I can't help it!

My tumor was originally 3.2cm tall. My original ultrasound, CT scan, and bone scan showed everything was clear but also I know its not going show single cells or small spots :(

So right now I wait until I meet with my oncologist on Monday and find out what the game plan is. Right now it sounds like they want to do surgery as soon as my Pneumonitis is cleared up. The pulmonary specialist said that it can take a while and normally they would wait until it's completely gone but it can take a while and in this case with cancer it sounded like if they could get it to a certain point they would manage it to do surgery. I had a breathing test (the one with the booth) and he said my lung capacity looks good. O2 saturation was 98 I think. I was actually able to take a deep breath when doing it.

Sorry so long but it was such a shock. My husband said to me as we were leaving "whoa I did not expect that". I didn't either.

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  • beeline
    beeline Member Posts: 308
    edited March 2019

    Hi Susan, I also had to stop Taxol after 6 and was so shocked and upset I cried in the hospital for the first time since my surgical path results came back 6 months earlier. For me it was due to peripheral neuropathy which I honestly thought was not that bad, but because it can be permanent and can continue getting worse even after you've stopped, I was finally convinced to accept my MO's decision. I was assured at the time by everyone I talked to - MO, oncology nurse, BS - that no one knows what the "right" amount of Taxol is so there is no way of knowing if I got enough, but all agreed that having made it halfway through I would get most of the benefit. It was what the nurse said that really stuck with me. She is a survivor herself and has been doing the job for 40 years and she said to me, if something happens, if the cancer comes back, it won't be because you didn't get all the Taxol. For whatever reason, that really made sense to me. Also, realistically I knew they wouldn't let me finish the full course so the best I could hope for was 1 or 2 more doses that they were going to lower by 20% anyway. Put that way, it did not seem worth risking permanent disability for maybe 1 or 2 more treatments that were probably not going to make the difference.

    I think you have even more compelling reasons to stop. You have already been through so much! And I am so sorry about your mother. That must make it even scarier and harder. But the good news for you is because it is neoadjuvant, your MO can see if it worked and if not add the Xeloda as he has already suggested. Because my chemo was adjuvant, I'll just never know until or unless it comes back. I am now 8 weeks out from the last Taxol and have stopped worrying about it, in part because I have been contending with hormone therapy and rads and have signed up for a clinical trial so I know I am doing absolutely everything I can. I think you will find as you move onto the next steps of treatment it will be easier to accept. And as my nurse said, if something happens, it won't be because you stopped Taxol at number 6. Good luck with your next steps and keep us posted. x

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  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 127
    edited March 2019

    Hi Susan,

    I too have had DD AC and now am doing weekly Taxol. I have developed a nagging cough shortly after I started round 2 of Taxol. It’s been 2 weeks since the coughing began. Just completed round 3 on Tuesday.

    Finally got to see MO today, we did blood work and chest X-ray, and nothing seems unusual. However, this cough is steadily getting worse. Though, MO believes it’s just a cold.

    You mentioned that your team often asked if you had a cough. Is it because this is one of the more worrisome side effects of Taxol?

    Are there any particular symptoms that would indicate Pneumonitis? Any advice you have is appreciated. Thanks


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