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Please tell me -- does Avastin cause hair loss?

I really, really need some input and advice. My medical team wants me to continue taking Avastin until the end of February, 2009 (I actually had a dose this morning). However, I'm now reading that Avastin causes hair loss, water retention, and mouth sores -- exactly those things that I found the most distressing about chemotherapy!

My clinical response to chemo was very, very good. At surgery, my nodes were sterile, and only ca. 5 mm area of neoplasm was still extant within a large cocoon of necrotic tissue in the breast. I will now go on to six weeks of daily radiation. Whether or not to continue with the Avastin is pretty much a matter of choice.

 First of all, does Avastin alone really cause the effects listed above? If so, how common are those effects? How many of you would elect to continue taking the Avastin if you were in my bra?

 I really, really need your input. I don't want to take anymore of that CRAP into my body, but DH and doctors are pushing me to continue. DH because he thinks it will help me; the doctors presumably because they sponsor the clinical trial that involves the Avastin (B-40). Yep, I'm still as cynical, paranoid, and distrusting as always.

Thanks,

Annie

Comments

  • Sassa
    Sassa Member Posts: 98
    edited September 2008

    Annette,

    As far as you know, right now you are NED.  The problem is that you had a highly aggressive cancer (as do I) and you don't know if a stray cancer cell is floating around somewhere looking for a home. 

    If I was in your bra (which I can't be because bilaterals left me blissfully flat), I would be doing anything I could that might stop a recurrence.  As a triple negative, you have only the options of surgery, radiation and chemo open to you if a recurrence happens. 

    If the Avastin is not causing you a lot of problems, I would stay on it.  In the long run, what is hair (and yes, I agree the loss of it is the most soul sucking aspect of chemo) in comparison to a life that is NED?

    Mary Jo (who is sweating out her doctor's appointment tomorrow to get the results of her quarterly testing and scan)

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 13
    edited September 2008

    Dear Mary Jo,

    Thanks so much for your input. I know that everything you say is accurate, and yet I dread being on a medication with so many undesirable and potentially dangerous side effects for another seven months. In addition, although my oncologist would like me to stay in the trial, he did say nobody knows if the Avastin will help or even hurt someone who's had an excellent clinical response to neo-adjuvant treatment. As I told my mother this evening, I'm almost more afraid of the drug itself than of a recurrence of the cancer (by the way, I am slated for radiation and a bi-lateral as well).

    To make a long story short, I wonder if I'll be able to bear the fear and discomfort of the treatment at this point.

    I will keep my fingers tightly crossed for you tomorrow that all your tests and scans come back perfect. Please come back and let us know how things went when you have answers (all GOOD) in hand.

    Hugs,

    Annie

  • Ixia
    Ixia Member Posts: 1
    edited September 2008

    Hi Annie,

    Here is an article in the NY Times about Avastin. You may find it interesting.

    http://www.nytimes.com/2008/07/06/health/06avastin.html

    Best to you, Ixia 

  • sftfemme65
    sftfemme65 Member Posts: 74
    edited September 2008

    Hi Annie,

    I am on clinical trial E5301.  I am on only Avastin right now.  I have done 5 of the 10 alone treatments (also had avastin with A/C and taxol).  Once I stopped taxol my hair is growing like crazy, Avastin is not effecting it at all.  My mouth is a little sensitive, I just started noticing it this week and I have not retained any water that I'm aware of.  I will tell you I am starting to have serious issues with my sinus's and it is very much a pain in the a** and painful.

    Teresa

  • lemonld
    lemonld Member Posts: 2
    edited September 2008

    Annie,

    According to the literature i was given by my onc it states that tumors shrink more often than with chemo alone, cancer was kept from growing for alonger time compared to those receiving chemo alone, People who received Avastin lived longer than than receiving chemo alone.  Avastin is not a chemo it is an "antiogeneses which stop the blood flow through the new vessels making any new tumors that might form helping starve the tumor.

    Common Side effects are: Minor nose bleeds noted in clinical trial, usually stopping on their own or by holding a tissue to the nose, call doctor is you feel dizzy or faint or if bleeding doss't stop after 10-15 minutes.; Hypertension, standard oral medication were used to manage HPB, tell doctor if you've had HBP in the past; Proteinuria (too much protein in urine, detected by blood test); orther side effect included weakness, pain, diarrhea, and luekopenia (a reduced white blood cell count.

    Serious side effect are:  in clinical trials for colon cancer there was a small percentage of people treated with Avastin in combination with chemo who experienced serious side effects, including gastrointestinal perforation (2%) and slow or incomplete wound healing (1%) and in rare cases, these side effects were fatal.

    I have not read anywhere that suggest that Avastin causes hair loss, but can not say for sure because I have not read everything on the drug.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 13
    edited September 2008

    Hi all,

    Thanks so much for the responses. I'm grateful for the hair information, as well as to know Avastin doesn't appear to cause as severe a hairloss as some other drugs given for BC. I'm especially happy to have the New York Times article because it seems to support the conclusions of some of the medical studies I've been able to access at my university library, i.e. that Avastin doesn't appear to prolong life significantly (although I'm sure one could debate whether or not four months is "significant").

    I guess I'm just tired of it all. I've had eight rounds of chemo, including seven rounds of Bevacuzimab. I've had a lumpectomy including full axillary dissection. I'm getting set now for six weeks of daily radiation, and have a bilateral mastectomy programmed for June (can't take enough time off work until then). I feel further Avastin might be overkill, but would also like -- just as everyone else on these boards -- to do anything USEFUL to prolong my life. The keyword is,, of course, "useful."  If it doesn't work, or doesn't work in any significant manner, then I don't want to put it into my body. I've had enough of all that.

    Thanks again, and love to all.

    Annie

  • Sassa
    Sassa Member Posts: 98
    edited September 2008

    Annie,

    Everything came back AOK today at the doctor's office.  My next round of follow up testing will put me two months shy of the magic two year mark for us HER2+ and trip neg gals.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 13
    edited September 2008

    Dear Sassa,

    I am SO pleased! That is wonderful news, and now you can pretty well bet on being among the lucky ones who make it through for good. You are in my thoughts, girl!

    Love,

    Annie

  • ibcspouse
    ibcspouse Member Posts: 14
    edited September 2008

    Heather

    My wife doctor who is generally considered the leading expert on IBC is a strong supporter of Avastin.  My wife was on avastin plus chemo for 27 weeks, when her MUGA dropped to 27% (heart scan with left ventricle ejection factor) this is Congestive Heart Failure.   He took her off Avastin saying that is what caused it.  He does belirve that Avastin did stop her progression till he could get the right mix of chemo's to start killing the cancer.  On Avastin her hair did start to grow back once she got off TAC. He also credits Avastin for help bringing her CTC (tumor cells that circulate in blood down from over 150 to 0.  So Avastinn good and bad.  So if you stay on it, ask for MUGA if you are not already being monitored and CTC count to be done with your normal blood work periodically.

    Good to hear you are having such good progress.

  • HeatherBLocklear
    HeatherBLocklear Member Posts: 13
    edited September 2008

    Thanks, Spouse, I appreciate your input. I had a Muga scan before I started treatment back in February, but none since. I'm not sure my medical team is monitoring me closely enough for me to be able to safely stay on the Avastin. I hope your wife is doing well; let us have updates, please.

    thanks again,

    Annie