Avastin Experiences?

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Becs511
Becs511 Member Posts: 303
edited August 2016 in Stage IV/Metastatic Breast Cancer ONLY

I'm scheduled to start IV Avastin on Friday, in combination with my already prescribed Xeloda (in the midst of my 3rd cycle with no SEs yet, not like I am looking for any!), and Herceptin. Since I know this is not a drug usually prescribed for breast cancer, I was wondering if there is anybody else on it, or have any knowledge, either personal or second hand, about it, and it's side effects. It is one thing to have a nurse go over them with you or to read them on google, but hearing from people who have experienced them is always better!!

For background, the reason why this is being added in for me, is I had gamma knife to 7 metastatic brain lesions in February. My last brain MRI done at the end of July showed significant levels of radiation induced necrosis, and my team at Sloan Kettering believe that Avastin will aid in the necrosis healing process, and help to continue to shrink the lesions. They were debating between either Avastin or Tykerb, but felt that the combo of Tykerb and Xeloda would be more difficult for me to tolerate since it tends to cause GI issues.

From my understanding, Avastin is typically given every 2 weeks, but they arranged for me to get a slightly higher dose every 3 weeks instead. That way it will line up with my Herceptin, and I can just do both at the same time making things much easier for me (and for them).

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  • steelrose
    steelrose Member Posts: 3,798
    edited August 2016

    Hi Becs,

    I had the Avastin/Xeloda combo six months after my diagnosis (spine/sternum/liver) in 2010, and it was a winning combo for me... shrunk all tumors on my first step to NED. I had more se's from the Xeloda I think... terrible hand/foot syndrome. I had some nausea too (who knows if it was the Avastin or the Xeloda), but nothing horrific that I couldn't handle. I also didn't lose my hair. Avastin is an excellent drug for so many, I was surprised when they yanked it soon after my last dose. I think it's hard to come by in the U.S. now.

    I wish you great success with this, and few side effects. You're an amazing young lady, by the way!

    Love to you...

    Rose.

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  • Becs511
    Becs511 Member Posts: 303
    edited August 2016

    Thanks Rose! Starting a new drug is always a scary proposition, especially one that is rarely prescribed. But hearing your positive experiences on my new "cocktail", has taken some of the edge off! I get my IV drugs on Friday aftenoons, sowhenever I go, I always jokingly refer to it as my post-work happy hour...

    I live on my own in Manhattan, work-full time, and try to live my life as a young, single NYC gal as "normally" as possible, so whenever I have a treatment change, I get nervous about how it will impact my lifestyle. Your post has helpedcalmed my fears about being able to keep it up.

    Here is to happier and healthier days ahead for all of us!

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  • pajim
    pajim Member Posts: 2,785
    edited August 2016

    Becs511, I had one dose back in 2008. I was on a clinical trial which we had to stop for other reasons. I don't remember any side-effects at all, but it was a long time ago and I don't remember the dose.

    Onc seemed to feel it was "nothing". Maybe a runny nose? That was back in the day when there were few targeted therapies so anything that didn't cause nausea was thought to be easy.

    Good luck with it!

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  • Becs511
    Becs511 Member Posts: 303
    edited August 2016

    Thanks Pajim!

    After posting and not getting any replies on a very active message board, I was getting super nervous about starting this drug and how rarely it is prescribed for breast cancer use. I'm definitely starting to feel more comfortable with it, and anxious to actually get started.

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  • Rmanmom
    Rmanmom Member Posts: 31
    edited August 2016

    I am currently receiving Avastin for radiation induced necrosis from 5 rounds of SRT I received late Jan/early Feb to treat a lesion on my brain stem. I have received 3 infusions so far, every other week and no SEs except for the occasional runny nose and a slightly horse voice a day or two after treatment. Unfortunately, the SRT left me with severe peripheral neuropathy affecting my right arm and leg. I was doing well and then regressed rapidly. An MRI pointed to the increase in necrosis. You will be monitored for high blood pressure and increased protein in your urine. I try to not post here as I do not have an official stage 4 diagnosis. The lesion was found by accident during a cervical spine MRI taken due to some carpel tunnel symptoms I had. It did not present as cancerous on the first brain MRI and could not be biopsied due to the location. The lesion has been called everything from a random finding to a breast cancer met depending on who you ask and is officially diagnosed as a pituitary adenoma. So far while the Avastin quickly alleviated the return of symptoms such as nausea, the neuropathy remains. My neuro-onc wants to add Xeloda which I am willing to try. My MO is hesitant due to the lack of cancer diagnosis. He would like to add Herceptin-Perjeta due to my original Her2+++ breast cancer and my pCR from 6 rounds of TCH and less SEs. The HP combo will be a really tough sell to my insurance co because they would be going on the assumption that not only is it a met, it is also Her2+++.

    My doctors were all in agreement that Tykerb "doesn't work". Reading these boards there does seem to be mixed reviews.

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