HER2 Support Group Forums - View Single Post

jmihay · 02-16-2013, 01:36 PM

I had double mastectomy in 1986. No followup was done then. Early in 2001
I was diagnosed with Stage 4 metastasis. Had one round of chemo and was then started on Herceptin. So this will be my 12th year on it. I had brain tumor in 2009. Zapped with gamma knife. Take MRIs since then. Will cut back to 6mo instead of 3 on them this year.
PET Scan each year. MRIs have all been NED (no evidence of disease) and PETs have been NED for the last 2 years. Lucky me. Developed lymphedema in 2006 from having someone surprising me by taking blood pressure in both arms. (I was distracted by talking to to the cardiologist at the time.) Last Oct. I talked to Oncologist about quiting. (I was the first patient he gave Herceptin to in 2001. He was saying I could stop if I wanted to. I said, "If it went from my body to my brain, what is keeping it from going from my brain to my body? (Should be noted I have NEVER had a marker in all these years so how would I know of recurrence?) He said, "I knew you'd say that" and I continue with my herceptin infusions every three weeks. I see from these many posts that there does not seem to be a consistent answer to the "when to quit" quandry.

02-16-2013, 01:36 PM	#31
jmihay Member Join Date: Sep 2005 Location: Morro Bay, California Posts: 14	Re: 3 years + on Herceptin, Why I had double mastectomy in 1986. No followup was done then. Early in 2001 I was diagnosed with Stage 4 metastasis. Had one round of chemo and was then started on Herceptin. So this will be my 12th year on it. I had brain tumor in 2009. Zapped with gamma knife. Take MRIs since then. Will cut back to 6mo instead of 3 on them this year. PET Scan each year. MRIs have all been NED (no evidence of disease) and PETs have been NED for the last 2 years. Lucky me. Developed lymphedema in 2006 from having someone surprising me by taking blood pressure in both arms. (I was distracted by talking to to the cardiologist at the time.) Last Oct. I talked to Oncologist about quiting. (I was the first patient he gave Herceptin to in 2001. He was saying I could stop if I wanted to. I said, "If it went from my body to my brain, what is keeping it from going from my brain to my body? (Should be noted I have NEVER had a marker in all these years so how would I know of recurrence?) He said, "I knew you'd say that" and I continue with my herceptin infusions every three weeks. I see from these many posts that there does not seem to be a consistent answer to the "when to quit" quandry.