BETH Clinical Trial

Hi Debbie,

I'm from Canada and my Med Onc. was trying to get me to join this clinical study.  Avastin added with other drugs has produced very good results in colon/rectal cancers, so they are trying to see if it will produce better results in HER2+ bc patients.  There are some serious side effects attached to it though and that is why I opted not to join the trial.  If you or anyone in your family have any history of blod clotting then this is not the drug for you.  I was also told it can cause rectal tearing.  The way I looked at it was Herceptin is already giving me very positive/high percentages, and while I do see the merit in clinical trials, I personally didn't want to expose myself to these serious SE's.  Just my opinion........hope it helps a little.  Best wishes to you!! 

Okay, found the thread for the triple negs...http://community.breastcancer.org/forum/6/topic/703318?page=28#idx_839.  If the link doesn't work it is in the Help me get through treatment forum.

I also wanted to add that I actually had an Aunt that passed away from a blood clot hitting her heart when she was 21. So, I was tested for the clotting factor before the test and it came back negative so, I was good to for the trail.

I was offered participation in a clinical trial adding Avastin to my chemo.

I decided not to participate. At stage I, the risk vs benefit of adding Avastin didn't make seem worthwhile to me. My main concern was increased risk of stroke. At stage I with TCH, my risk of recurrence should be low so adding Avastin wouldn't improve it much. Stroke can have a long term effect and didn't seem worth it. 

If I was node positive, I would have looked at it more carefully because the potential benefit is greater. In the BCIRG 006 trial of TCH, overall survival at 4 years was  91% for node postive and 98% for node negative. Disease free survival at 4 years was 82% for node negative and 93% for node positive.

I am participating in the SWOG S0307 study which is testing the effect of adding bisphosponates to treatment. 

Debbie,

I think you are making the right choice.  I am stage IIIc but if I were stage I I don't think I would have done it.  Good luck with the rest of your treatments.

Hi Debbie,

I went with the choice you did - see my other message to you.. This is Caryn54

stongerwomen

Hi papillon. Maybe this is too late for you. I am joining the BETH trial, provided I am not TopoII (should have the FISCH test on this this week). My reasons are that TCH (even plus Avastin) is much less hazardous than my other alternative, which is FEC + Herceptin, as antracyclines combined to Herceptin dramatically increase serious lifelong heart injury, and this risk multiplies if you are also going on five years hormonal block, as is also my case. TCH is a much milder combination, and the Avastin percentages of blood clots (up to 30%) are so high because they include minor incidents. The truth is, very few women have had severe problems with blood clots when treated with Avastin, which has been tried on all kinds of cancer patients for years.

In this light, Avastin might prove an extra bonus.

There is another thread on this topic here too, if you wish to follow it. 

Hi Wisehorn, Glad to finally hear of someone going thru the BETH trial. I am new to discussion boards, but learning! I am meeting with a research nurse on Mon. we will see after all my tests come back if I will be a candidate for the trial.my Dx: IDC,hormone receptive,HER2 positive. I had a Lt. breast mast and node removal (2 positive out of 10). I am feeling good, and healing GREAT. But I am scared, and feeling a little apprehensive about chemo and such. I would love it for you to respond. and to all our "pink" sisters.....I raise my glass of (arizona raspberry tea) and toast you all a very happy new year!!!!

I am so glad to have found this forum.  I just joined today--and I have been toiling over whether or not to join the BETH trial study.  I am at this time, healing from a double mastectomy and lymph node surgery, as well as having developed web syndrome under the arm that had the lymph surg.  I am leaning towards joining the study--but would love to connect with some of you who are--and aren't going to do the study.  I am very fearful already of the chemo/herceptin/tomoxafin.....  I am worried about adding one more drug to the cocktail!  Is this crazy?  I will be starting treatment around the middle to end of January.  At this point, I am going through with the Her/2 testing for the study trial.  Although I know I am already +, the study group is going to test again.  I have two great kids 3 and 6...and I just want to do what is best.  I know I can speak for all of us...I don't want to go anywhere!!!  I want to be here for a long, healthy, happy life   I know Avastin has shown promising results in other types of cancers, as well as Her/2 neg.  I have researched Avastin--you can only read the side effects so many times. Can anyone help?

Hi Naener - I wound up in the experimental group and had my first treatment yesterday.  The extra bag of Avastin added another 2 hours to the already long day, but all went well.  I have felt normal all day today - fatigued from not sleeping due to the steroids, but otherwise normal.

Dear Opie--I start chemo Feb 5th.  Have not found which group I am in yet.  My treatment is exactly the same as yours.  (plus or minus avastin)  Thanks for the deodorant tip.  I have heard that before, but haven't found a good one that works.  I will try the one you suggest.  Let's keep in touch.  I will also ask about the decadron.  I will keep you posted   Take care.  Naener 

opiee002 -- I have included a web address from the Scott Hamilton CARES initiative that explains the use of decadron.  http://chemocare.com/BIO/decadron.asp

The decadron gave me "fits" -- hyperactivity, insomnia and lots of eating -- felt like I could conquer the world for three days!

Hello Writer--I totally understand how you feel.  I went ahead with the study--got approved for everything, and was randomized to not be in the avastin group.  I start my Chemo on the 5th of Feb.  I think no matter what drugs you are going to be on--it's just plain old SCARY!  But I did like the fact that I could be helping other women with this study--and like you said, participants get a little more in-depth care.  I also did a pro's and con's list to help me decide.  As well as reminding my self that God is in control.  I hope this helps you.  A crystal ball would be great though, I must say!  I could have used one from the day of diagnosis.  But I find that talking to survivors and women who are going through this is the best medicine.  The best of luck to you.  I will be thinking of you on the 8th!

Naener, thanks for the positive words, and I'll be thinking of you on the 5th! You're right ahead of me, sister.

I decided to take part in the trial. Will find out later next week which group I'll be in. I decided I had t pay it forward. If it wasn't for the women who did the Herceptin trials 5-10 years ago, I wouldn't be getting the benefits today.

Hi Writer--I just read your post.  I wanted to let you know that today--my first day of chemo went well.  It wasn't as hard as I thought it would be.  So I wanted to ecourage you for Monday.  You will do just fine.  Bring a cozy blanket from home, a good book (nothing on cancer!), a good lunch, and someone you love and trust to go through this with you.  It is only day 1 for me... so we will see how the next couple       days go!  Best of luck to you, and keep me posted.  Go do some cancer bootie kickin.

Renee

how's everyone doing with Beth trial??

My mom's needs to decide whether to participate or not.