BETH Clinical Trial

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  • kristen25
    kristen25 Member Posts: 2
    edited May 2010

    i just started the beth trial this week. i am new to all this and would love to hear from everyone. I am doing TCHB as my regime. Been feeling so odd....  not a big fan of this whole chemo thing....

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  • NonniO
    NonniO Member Posts: 31
    edited May 2010

    Kristen,

    I'm in the BETH trial and I finished up with treatments at the end of February 2010. I really didn't notice any side effects from the Avastin, just from the chemo.  Avastin was added to the TCH treatments that began March 2009 so I had it for one full year.  By TCHB you mean "BETH" trial with Avastin, not some other drug, right? Can I also assume that you are at the beginning of your treatments and that you have just started chemo?  If so you should know that not everyone experiences the bad side effects - I didn't and continued to work full time with just one day off for the infusions.  I had them on a Thursday so that my really bad, fatigued days were on the weekends.  I did lose my hair sometime between the 2nd & 3rd treatments but it started to grow back last August - slowly but surely. I think the slow growth is either due to the Herceptin or the Femara that I'll be on for the next 4 years.  So, hang in there - you can do this!

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  • sonia_s
    sonia_s Member Posts: 2
    edited June 2010

    Hi.... I was just recently diagnosed with stage 2b invasive ductal breast cancer. Have already had a lumpectomy and am now awaiting the start of my treatment. This is all happening so fast for me, especially as i am only 22 year old. I am also HER2 + and am a candidate for the BETH trial. I live in Durban, South Africa, and currently there is only 1 other woman who was on the trial with my cancer center. She is however much older than me. I was just wondering if any of you are close 2 my age maybe, and want to share some thoughts & experiences on Herceptin, as well as experiences being a part of this study. I will only find out which leg of the study i fall under tomorrow, I am however hoping it is just Herceptin on it own. My chemo starts this coming Thursday together with the study drugs. I am very very anxious and a little scared too.

    Anyone who can shed some light on this journey, it would be much appreciated. 

    Thanks ;)  

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  • mspradley
    mspradley Member Posts: 129
    edited June 2010

    Just a quick update - I completed the TCH+ Avastin in late April and have had just Herceptin and Avastin infusions every three weeks since.  There have been no severe side effects from just the Herceptin + Avastin and my hair is growing in.  I have some muscle stiffness that I didn't have before, but think the steroids kept that away.  I'll gladly trade the steroids for muscle stiffness any day!

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  • writer
    writer Member Posts: 208
    edited July 2010

    It's been fine for me. I finished TC chemo on May 25, and had my first Herceptin and Avastin on June 16. I noticed almost no side effects. The low-level nosebleeds I had all the way through chemo were supposed to be from the Avastin, but I hardly had any of that once the T&C stopped-- just a little bit. 

    Anyway, it's been fine for me so far. No heart issues, no problems.

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  • elysemo
    elysemo Member Posts: 3
    edited July 2010

    I have not started yet, but my anticipated start date for the TCH is in 2 weeks.  This is very scary for me.  I will not know if I will get the Avastin until they do the randomization.  I have mixed feelings about the study.  there has been a lot written about Avastin lately but it looks like it is for HER-2 negative.  The whole losing hair is scary and of course the side effects, I have always had bad side effects to drugs.  I hope to continue working full time, howeverf I have a high stress job and I drive alot plus go to homes in addition to office time.  Are there any support groups for people in this trial?  I am in the Chicago area, anyone else interested in a support group in this area?

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  • elysemo
    elysemo Member Posts: 3
    edited July 2010

    I agree an dI haven't started yet!! I start in 2 weeks.  Did you get a port?

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  • ainemw
    ainemw Member Posts: 12
    edited September 2010

    Hi, I found this post really useful. I would be grateful for some advice on whether you think I should try avastin or not - I'm starting chemo soon - herceptin plus other  regular chemo drugs - non-metastatic breast cancer, tumor removed, first occurrence. Do I need avastin, in your opinion?

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    Just came across this. Doesn't mean it doesn't work. They just don't know yet:

    ------------------------------------------

    FORBES:
    Why The Avastin Breast Cancer Controversy?
    Roche's Own News Release Tells You

    http://blogs.forbes.com/robertlangreth/2010/09/17/why-the-avastin-breast-cancer-controversy-roches-own-news-release-tells-you/ 

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  • writer
    writer Member Posts: 208
    edited September 2010

    I've thought about pulling out, but I remain so grateful for the women who did the Herceptin study some years back that I feel it's my duty to keep going. And I've had almost no side effects since I finished chemo and just get Herceptin/Avastin-- still get some nosebleeds, but very minor compared to during chemo. My fingernails are terribly weak, but that appears to be the Herceptin. Anyway, I only have to make it through January, and I have to go in for Herceptin drips anyway, so might as well help get them some data on Avastin.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited September 2010

    I was also offered this trial.  I am stage IIb/IIIa.  (1.6 tumor but that one little extra node (4 instead of 3) put me in stage IIIa, though I consider myself more II.  Anyway, I decided against this trial.  I did a lot of research.  The fact is in a similiar trial for patients with non-mestatic colon cancer this drug povided no benefit.  The benefit it has provided to metastic breast cancer patients is also, in my opinion, not clinically significant enough to warrant the very serious potential side effects. My oncologist really wanted me to do this trial though. Another oncologist I was directed to told me that the benefit I would see if any, would be very small and this was not going to prove to be the wonder drug that Herceptin is for Her2+ breast Cancers (mine). They are considering removing this drug for Mestatic Breast Cancer patients and it was voted 12 to 1 to do so.  The average mean non-tumor growth extension of survival was 2 to 5 months.  Yes, this is significant for a person who has a year to live. But I do not see this as significant.  for a person who does not have mestastic cancer and has herceptin, the side effects were too horrible to risk participation  in this trial. I have already had a blood clot, I do not have high blood pressure and don't want to end up having to treat this in addition to my cancer.  It was a hard decision for me to make though.  But it was obvious to me that this drug doesn't really work from what I read on the internet and isn't worth the potential though rare side effects. It is also not supported by Susan Love....just a note of interest.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited September 2010

    But I support the women who chose to participate in the study!  I was just too scared to do so. This was just my own decision....

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  • mspradley
    mspradley Member Posts: 129
    edited April 2011

    I'm following up months later on this topic, but am encouraging any of you to take advantage of clinical trials that have already shown to be positive in other areas.

    I participated in the BETH trial and the advantage I felt weighed out the risks was the level of care that I would receive.  I received the high level of care by my oncologist that I would have had I not participated in a clinical trial, but I also had a research team following me closely in addition.  Instead of 6-12 month follow up visits, I will be seen/screened every 3 months.  The research team will follow me for 10 years, and since I am 46 years old, that gives me a peace of mind that I might not have otherwise.

    Throughout the year, I had 4 EKGs, 4 Echocardiograms, a PET scan and MRIs.  While others may not want this type of testing, I felt that being triple positive with a grade 3 tumor plus Paget's Disease warranted all the testing I could get.

    I understand that clinical trials are not for everyone, but I wouldn't do it differently now that I am on the other side. 

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  • kristen25
    kristen25 Member Posts: 2
    edited December 2012

    Wow, I haven t been back since my first time..... Had a very rough time physically with treatments...... I guess you could say what could go wrong went wrong..... I had the bleeding, intestinal damage, heart damage ( cardio toxicity) and my brain went nuts over the use of the steroids..... I have since had heart surgery due to the dilation of my left ventricle and caused my aortic valve to become insufficient.... Once they saw the heart damage progressing they pulled me off..... Unfortunately I had already completed 15 of 17. But on a positive note, I am still currently cancer free and that's what really matters :)

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  • weety
    weety Member Posts: 1,163
    edited January 2013

    I was wondering what the results ever were for this trial.  It is one I had looked at but did not end up enrolling, so I'm curious to what they found.

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  • Iamstronger
    Iamstronger Member Posts: 378
    edited January 2013

    I was in the trial. I had BP issues 1/2 way through, so we pulled out. But, the trial found that Avastin wasn't as helpful as they hoped. Although, my onc said that people who got high blood pressure seemed to benefit a little better than those who didn't. So, I figure I at least got a little more ammo!

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