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Marily · 02-03-2007, 02:15 AM

Cindee, I want to share a bit of what has happened to me. My left ventricular function went down to 21. I have a fantastic Cardiologist who with medication and careful watching has me back on Herceptin. Add a cardiologist to your Doctors. Also don't just accept one Dr's opinion, you must be strong and proactive. When you find information that you feel may be a benefit to you, ask questions! If you don't get answers (ones that make sense to you ) find someone who will give you a better explanation why you may or may not fit that treatment and than decide. My cancer was very aggressive and 2 months after I was diagnosed, I had gone from a small lump to stage IV breast cancer, highly er/pr positive and highly her2pos...+++ My tumor was 7.5 cm and the skin of my breast was firm, red and warm. I had lymph node involvement, a tumor in my liver, and Mets to lung and bone. Luckily, My new Dr was on the cutting edge of breast cancer care since we did not have much to go on. We have forged a path and continue to do so today. As I look back now, many of the things she did are what now is considered the treatment of choice! I was never told what I read or researched was not going to work. She would listen and say lets try it and see if you believe it will work. We found some very good things that helped that way and also a few that did not. I have had a mastectomy , a failed tram, due to infection, but had a great plastic surgeon who closed up my chest wall very nicely, and finally at 55 had my ovaries removed since they were still fully functional, so I could go on Aromasin, and off Tamoxaphin. My family has longevity on it's side and so we found my age can not be considered in a lot of decisions (my family is young for their age lol. I have two who lived to be over 100 and many in their late 90's) therefore I had to break a lot of misconceptions. There are no comparisons with cancer! My heart went down to a 21 ejection fx AFTER three and 1/2 years of Herceptin. It also came back to above 60 with rest and my cardiologist's knowledge of medications. I went back on Herceptin. I have developed an allergy to Herceptin now after 6 years but with the help of a very learned Oncologist's suggestions, I am still able to take it, and await Lapatinib. At present I am 6 years NED. Today I had genetic counseling due to the fact I might have the BRACA 2 gene, after someone doing a study looked into my family history. Volunteer for studies if you are able..... I continue to research, my Dr's watch carefully with Pet/Ct and Mugga and now with Elysa/Bayer test for her2 elevation, and we continue to remain aggressive and proactive. Be positive, laugh and learn all you can and strongly advocate for yourself. Also do it now, don't wait for later. It helps to do things you want to do and live your life to the fullest. That positive thinking and the fun you have doing things with family and friends helps you to be strong and healthier.
Hugs from Marily
(6 years living life with love, laughter and going strong.)

02-03-2007, 02:15 AM	#60
Marily Senior Member Join Date: Mar 2006 Location: Aurora CO Posts: 75	Congestive Heart Failure and Herceptin Cindee, I want to share a bit of what has happened to me. My left ventricular function went down to 21. I have a fantastic Cardiologist who with medication and careful watching has me back on Herceptin. Add a cardiologist to your Doctors. Also don't just accept one Dr's opinion, you must be strong and proactive. When you find information that you feel may be a benefit to you, ask questions! If you don't get answers (ones that make sense to you ) find someone who will give you a better explanation why you may or may not fit that treatment and than decide. My cancer was very aggressive and 2 months after I was diagnosed, I had gone from a small lump to stage IV breast cancer, highly er/pr positive and highly her2pos...+++ My tumor was 7.5 cm and the skin of my breast was firm, red and warm. I had lymph node involvement, a tumor in my liver, and Mets to lung and bone. Luckily, My new Dr was on the cutting edge of breast cancer care since we did not have much to go on. We have forged a path and continue to do so today. As I look back now, many of the things she did are what now is considered the treatment of choice! I was never told what I read or researched was not going to work. She would listen and say lets try it and see if you believe it will work. We found some very good things that helped that way and also a few that did not. I have had a mastectomy , a failed tram, due to infection, but had a great plastic surgeon who closed up my chest wall very nicely, and finally at 55 had my ovaries removed since they were still fully functional, so I could go on Aromasin, and off Tamoxaphin. My family has longevity on it's side and so we found my age can not be considered in a lot of decisions (my family is young for their age lol. I have two who lived to be over 100 and many in their late 90's) therefore I had to break a lot of misconceptions. There are no comparisons with cancer! My heart went down to a 21 ejection fx AFTER three and 1/2 years of Herceptin. It also came back to above 60 with rest and my cardiologist's knowledge of medications. I went back on Herceptin. I have developed an allergy to Herceptin now after 6 years but with the help of a very learned Oncologist's suggestions, I am still able to take it, and await Lapatinib. At present I am 6 years NED. Today I had genetic counseling due to the fact I might have the BRACA 2 gene, after someone doing a study looked into my family history. Volunteer for studies if you are able..... I continue to research, my Dr's watch carefully with Pet/Ct and Mugga and now with Elysa/Bayer test for her2 elevation, and we continue to remain aggressive and proactive. Be positive, laugh and learn all you can and strongly advocate for yourself. Also do it now, don't wait for later. It helps to do things you want to do and live your life to the fullest. That positive thinking and the fun you have doing things with family and friends helps you to be strong and healthier. Hugs from Marily (6 years living life with love, laughter and going strong.)