Her2 Question

[Unregistered]

I have been reading posts on this board of some time now and have learned a great deal from this site. What I have been wrestling with is my her2+++ status, basically I have been waiting for a recurrance or possibility that my neg sentinal node was wrong. My biopsy path report showed possible lymph invasion, so I am totally focused on that.
I met with rads onc yesterday to do the mapping before starting radation. I asked if I were to have radiation if I needed a mastectomy in the future would I be able to have implants. He was confused and stated that if I recurred then I would have another lumpectomy if caught early. He went on the say he didn't expect me to recur. Stating that I had a 3% chance of recurrance. I'm confused by this. I am Stage 1 Er-Pr-, Her2+++. Finished 4 cycles of A/C and went on Taxol for 12 weeks, started Herceptin with Taxol after 4 weeks into Taxol due to low Muga score (56% before A/C then 46% after). Started herceptin went Muga went to 53% and onc doesn't believe that I will be able to stay on herceptin for 1 year due to the decline in muga. Have been taking 100mg co-Q10 as directed by this site to improve heart function.
As I babble on what is exactly by stats for beating this? Most messages I read here have people who develop mets and go onto Stage IV. I really want to know what I should be focusing on, feel at this point I'm just waiting for bad things to happen. Anyone have any stats or recommendations on how to move on from this? My mother died 2 years ago after struggling with mets to her bones. She never knew she had mets or a recurrance from her bc dx 15 years prior. A bone broke and thats how she knew she had met to the bones. She only lived with the mets for 4 years, and it was a difficult 4 years. Don't want a repeat of this.
Any suggestions, thanks so much for listening and your support.
Rocky

[Becky]

Rocky


Right now, you are doing all you can with your treatments. And, you are lucky enough to also be able to use Herceptin in the adjuvant setting. After rads are done, boost your CoQ10 up to 300mg to 400mg per day (Co Q10 is an antioxidant so you shouldn't take such a large dose (beyond the 100 mg) during the remaining Taxols or rads). This will help your muga so you can get the full year of Herceptin. Start walking too. This not only will strengthen your heart but it has been shown in studies that walking 3-5 hrs a week reduces the chance of recurrence by 24% (and the heart strengthening can also help keep you on Herceptin for your year too). Also, eat a healthy diet that is low in fat. This also has been shown to lessen the chance of recurrence.

If your doctor says your muga is too low to stay on Herceptin, you can tell him that the NCI's (National Cancer Institute) guidelines are to retest your muga after one month and if it is back in the normal range, you can begin the treatments again.

You are doing everything you can do and your chance of mets is low. Just continue with your treatments and go out and live your life. Its scary in the beginning but everything will be okay and life will be good again.

Don't hesitate to ask questions here or most importantly, to your doctor. Everyone is here to help.

Have a nice weekend

Becky

[al from Canada]

I would like to add in that Becky has provided you with excellent advice. My comment is: don't read about the stats. There aren't any reliable ones for your case. They just announced the results of the HERA trial so your treatment is brand new and you will determine the stats, you will help write the newest book on HER2 BC.


Good luck,
Al

[Unregistered]

Just wanted to thank you all for your responses. I'm calmer now and going to focus on living one day at a time and not obsessing over the future.
Thanks again.
ROcky