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suniskye · 02-02-2006, 02:01 PM

Isn't it funny how different doctors believe different things? I am sorry to say, this was a reoccurrence for me. In 2002 at the age of 46, I had invasive ductal carcinoma, HER2NEU 3+, Elston Grade 3 w/comedonecrosis, hormone negative... tumor was only 9 mm and was found at Hopkins after I had been told to come back in 6 months everything was fine. For the first time in my life, I did not listen and went for a 2nd opinion and within 1 week was being operated on for having cancer. I had a lumpectomy, SENTINEL node biopsy and 6 weeks radiation. Chemo was not offered to me and in fact I was told that it was not necessary as it would not make a huge difference.

In April 05 I found a lump under my arm. It was fairly large. Within a week I found that I had cancer again, a local reoccurence to the lymph nodes in my arm. The cancer had been there the entire 2.5 yrs I thought I was in remission. I was not given any scans at all and was in fact told they do not do that unless there is a problem. I wish I had demanded one but hindsight is 20/20. Had I known that I would go thru this a second time, I would have had the anxcilliary surgery at the same time rather than a sentinel node biopsy. (Just a word of advice here from someone who was extremely disappointed that my lymph node biopsy happened to be falsely negative.)

I had 10 nodes removed in May 05 and anxcilliary surgery, Adrinamycin/Cytoxin every 3 weeks X 4 from June-August. I switched hospitals after the first round. I had had it with them. I had such severe infections and they blew me off and the first thing the new doctor did was send me to an ENT. My ear was so bad that it made me cry and they were talking about admitting me for iv antibiotics if the meds did not work. Fortunately, they worked. So in August I began Taxol and Herceptin. My muga was at 75% after adrinamycin before taxol/her. I had that weekly X 12. In November my muga was at 50.5% and I began Herceptin alone every 3 weeks in Dec. My muga this Monday was 42% and I won't ever be getting Herceptin again.

I can tell you I am not disappointed. The Herceptin made me feel really horribly tired. I've not been able to do much of anything except work then sleep. I have worked full time throughout this ordeal and had to change my hours once the Herceptin began in triple doses....I just could not stay awake for 8 hours. I understand that fatigue is also a symptom of heart problems.

Now, my onc told me that at 42% I should not be having symptoms. However, I have little egg shaped pockets of fluid at my ankles and somedays you cannot even see where the ankle is.

I am waiting to have another muga the end of the month. I am praying it stays the same or goes up now that I'm not getting Herceptin. I don't know what I'm going to do if it continues to go down because I am here to tell y'all I just am sick of all of this.

I somedays want to give it to God and forget about it.

Diana

02-02-2006, 02:01 PM	#14
suniskye Member Join Date: Feb 2006 Posts: 8	muga @ 42% Isn't it funny how different doctors believe different things? I am sorry to say, this was a reoccurrence for me. In 2002 at the age of 46, I had invasive ductal carcinoma, HER2NEU 3+, Elston Grade 3 w/comedonecrosis, hormone negative... tumor was only 9 mm and was found at Hopkins after I had been told to come back in 6 months everything was fine. For the first time in my life, I did not listen and went for a 2nd opinion and within 1 week was being operated on for having cancer. I had a lumpectomy, SENTINEL node biopsy and 6 weeks radiation. Chemo was not offered to me and in fact I was told that it was not necessary as it would not make a huge difference. In April 05 I found a lump under my arm. It was fairly large. Within a week I found that I had cancer again, a local reoccurence to the lymph nodes in my arm. The cancer had been there the entire 2.5 yrs I thought I was in remission. I was not given any scans at all and was in fact told they do not do that unless there is a problem. I wish I had demanded one but hindsight is 20/20. Had I known that I would go thru this a second time, I would have had the anxcilliary surgery at the same time rather than a sentinel node biopsy. (Just a word of advice here from someone who was extremely disappointed that my lymph node biopsy happened to be falsely negative.) I had 10 nodes removed in May 05 and anxcilliary surgery, Adrinamycin/Cytoxin every 3 weeks X 4 from June-August. I switched hospitals after the first round. I had had it with them. I had such severe infections and they blew me off and the first thing the new doctor did was send me to an ENT. My ear was so bad that it made me cry and they were talking about admitting me for iv antibiotics if the meds did not work. Fortunately, they worked. So in August I began Taxol and Herceptin. My muga was at 75% after adrinamycin before taxol/her. I had that weekly X 12. In November my muga was at 50.5% and I began Herceptin alone every 3 weeks in Dec. My muga this Monday was 42% and I won't ever be getting Herceptin again. I can tell you I am not disappointed. The Herceptin made me feel really horribly tired. I've not been able to do much of anything except work then sleep. I have worked full time throughout this ordeal and had to change my hours once the Herceptin began in triple doses....I just could not stay awake for 8 hours. I understand that fatigue is also a symptom of heart problems. Now, my onc told me that at 42% I should not be having symptoms. However, I have little egg shaped pockets of fluid at my ankles and somedays you cannot even see where the ankle is. I am waiting to have another muga the end of the month. I am praying it stays the same or goes up now that I'm not getting Herceptin. I don't know what I'm going to do if it continues to go down because I am here to tell y'all I just am sick of all of this. I somedays want to give it to God and forget about it. Diana