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Barbara H. · 10-10-2010, 09:09 AM

Hi Trish,
You give an excellent perspective on the issue of working. I too did not have Herceptin when I was diagnosed in 1998. In spite of having 7 out of 9 lymph nodes positive, it took six years for me to be diagnosed with Stage 4. As a result of my daughter's wedding, I had brain surgery with focused radiation and then went on Herceptin alone. It completely put me into remission and lasted to for 1 1/2 years. To this day I feel that I would have had a good chance of no progression if I had been able to have Herceptin after Chemo. I then had Navelbine from April to about November. After that I was on Herceptin alone for a few months and went off of it to try to get into the weekly Phase 1 TDM-1 trial. I was on that for 2 years, and a year ago I had to go off of it because it was causing lung inflammation. For the past year I have been on Tykerb/Hercepin. My CEA is less than .5 and my CA27/29 stays below 20. Because I had so many scans during the TDM-1 trial and am doing so well, I refuse to have any scans as long as I do not have symptoms and my markers remain so low. So far I have been able to rely on them. The reason I do not want scans is because I am hoping that the eventual development of targeted therapy will keep me around longer, and I do not wish to expose myself to more radiation than is necessary. I know that when I my markers begin to climb, or if I decide to go on a trial in the future I will have to be scanned.

The point that I getting at, is that targeted therapy has allowed me to have a pretty good quality of life, and for the most part has worked. Therefore it is relative easy for me to continue to work. I was younger when I had AC-T, and I continued to work because I knew that the time I was on it was limited. However, if I were to go on an endless road of difficult chemo drugs, I would also have to stop working.

I looked at your profile and can certainly understand why it would be difficult for you to work. This is one of the reasons that I am so upset that the FDA did not have the compassion and understanding to fast track T-DM1. It is truly a miracle drug when it works, and it allows the people who are on it to lead a normal life.

Best regards,
Barbara H.

10-10-2010, 09:09 AM	#20
Barbara H. Senior Member Join Date: Sep 2005 Location: Newton, MA Posts: 951	Re: Career crossroad Hi Trish, You give an excellent perspective on the issue of working. I too did not have Herceptin when I was diagnosed in 1998. In spite of having 7 out of 9 lymph nodes positive, it took six years for me to be diagnosed with Stage 4. As a result of my daughter's wedding, I had brain surgery with focused radiation and then went on Herceptin alone. It completely put me into remission and lasted to for 1 1/2 years. To this day I feel that I would have had a good chance of no progression if I had been able to have Herceptin after Chemo. I then had Navelbine from April to about November. After that I was on Herceptin alone for a few months and went off of it to try to get into the weekly Phase 1 TDM-1 trial. I was on that for 2 years, and a year ago I had to go off of it because it was causing lung inflammation. For the past year I have been on Tykerb/Hercepin. My CEA is less than .5 and my CA27/29 stays below 20. Because I had so many scans during the TDM-1 trial and am doing so well, I refuse to have any scans as long as I do not have symptoms and my markers remain so low. So far I have been able to rely on them. The reason I do not want scans is because I am hoping that the eventual development of targeted therapy will keep me around longer, and I do not wish to expose myself to more radiation than is necessary. I know that when I my markers begin to climb, or if I decide to go on a trial in the future I will have to be scanned. The point that I getting at, is that targeted therapy has allowed me to have a pretty good quality of life, and for the most part has worked. Therefore it is relative easy for me to continue to work. I was younger when I had AC-T, and I continued to work because I knew that the time I was on it was limited. However, if I were to go on an endless road of difficult chemo drugs, I would also have to stop working. I looked at your profile and can certainly understand why it would be difficult for you to work. This is one of the reasons that I am so upset that the FDA did not have the compassion and understanding to fast track T-DM1. It is truly a miracle drug when it works, and it allows the people who are on it to lead a normal life. Best regards, Barbara H.