herceptin and low muga scan results !!

Hi Bonnie,
I don't really know anything about the muga scan results. All I remember is that I had one before I started chemo and I don't even know the results for that. But I would like to ask you another question. I finished chemo rads dec 30, 2003 and was not offered the Herceptin trial and with all the positive results that have come out, I feel like I am left hanging (so to speak). Being HER2+++ I wish I had the opportunity to get the herceptin. Are you saying that your doctor allowed you to try the herceptin after all treatments. Are they currently offering this to those of us who are Her2 and did not do the hercpetin. I thougtht they were only using herceptin during the chemo regiment.
Can you please give me any information that you have, I am meeting my onco for my 3 month appt next week.
Thanks
Kristen

krisrey said:

Hi Bonnie,
I don't really know anything about the muga scan results. All I remember is that I had one before I started chemo and I don't even know the results for that. But I would like to ask you another question. I finished chemo rads dec 30, 2003 and was not offered the Herceptin trial and with all the positive results that have come out, I feel like I am left hanging (so to speak). Being HER2+++ I wish I had the opportunity to get the herceptin. Are you saying that your doctor allowed you to try the herceptin after all treatments. Are they currently offering this to those of us who are Her2 and did not do the hercpetin. I thougtht they were only using herceptin during the chemo regiment.
Can you please give me any information that you have, I am meeting my onco for my 3 month appt next week.
Thanks
Kristen

Hi Kristen, I don't believe Herceptin has been approved for prescriptive use as a preventative. Original trials were for metastatic breast cancer that over expressed HER2. The manufacturer, Genentech, is currently conducting clinicsl trials where Herceptin is being added to the normal chemo regimen of women who are early stage with operable cancer but who are at least HER2+++. The results of these trials may yet increase its availability as adjuvant treatment, much like the Arimidex I currently take, for women like yourself. Have you spoken with your oncologist about eligibility in any of the Herceptin trials? Good luck.
terri

tlmac said:

Hi Bonnie, According to the results of clinical trials, only 4% of women taking Herceptin experienced any sort of heart damage so it's considered low risk. That being said, have you discussed this drop in score with your oncologist? Since your score was in the 50s to begin with, do you see a cardiologist who might consult with your medical team? I'm including a link, regarding Herceptin and MUGA Scan results on another forum where several women were discussing the drop. If you have a cardiologist, discuss the results with him/her. If not, by all means discuss it with your oncologist. Good luck!
terri
Here's the web address of the discussion I mentioned:

http://bca.ns.ca/forum/index.cgi/noframes/read/301656
Herceptin/Muga scan need help

I'm coming in a little late here, sorry. I was in the herceptin study for early stage her2. I finished a little over a year ago. Just saw my dr. last week & he told me it looks so successful that they are encouraging any one who is her2+ and didn't have it, to start herceptin. So if you didn't receive it, definately talk to your dr. I had muga scans every 4 wks but I don't remember at all what my numbers were. I did get high once, went off herceptin for a month - or so - funny how you loose those details! My heart bounced back and I was able to finish the 52 wks worth. This was probably 7 or 8 months in to it, so I would really be on the dr's if it starts early. You know, when they first told me this was for 52 wks I was overwhelmed - this along with 9 months of chemo and 8 wks of rads was just to much to absorb at first. Looks like that year of my life wasn't so bad after all! When your down to just herceptin, the infusion is only about 1/2 hr. and that's easy. Hope it works out for all.

BonnieT said:

HI
Thanks everyone for the info. I saw a cardiologist thursday and he feels that there is no permanent heart damage and that our bodies have resevoirs that help us make up for when things happen.( ex. we don't use all the lung compacity we have except when we exercise hard ) I had an Echo and my ejection is already up to 45 from 36 just a couple of weeks ago.I will be on 2 heart meds. and will get rechecked in 2 months , My Oncologist wants to stop the herceptin until we get the Echo in October.Does anyone know how long herceptin stays in your body ?? Aftering hearing all the good results with it I don't want to miss this opportunity !!
Bonnie T

Hi Bonnie,

I was on two heart meds to help get me thru my herceptin trial. Accupril and Coreg. What meds will you be taking? Since there isn't much info out there about recovering from herceptin, my cardiologist kept me on the meds for about a year (as he does for all his regular patients with weakened hearts) after the herceptin ended. I was just weaned off everything last month. Does he plan to keep you on the meds once you begin treatment again? 36 is a pretty low EF. You were seriously at risk for conjestive heart failure. I would ask to stay on them inorder to finish your treatments. I wouldn't have done it any other way. Good luck with everything.

Susan