[michka]

I thank you all for your nice and so encouraging messages! It is so wonderful to have this group to share the good and the bad things on this journey. I have to thank Joe and Christine once more.

CoolBreeze, I posted my SEs on the TDM1 side effects thread but don't get me wrong: I really risked my life when I refused all other chemo and went for the TDM1 trial because like you, at the time, I just knew my body could not take the old chemos. I suffered so much with many treatments. TDM1 has been difficult the first rounds but NOTHING to do with FEC or Taxol or Navelbine for me. In the beginning I had so many tumors dying at the same time I figure my body was reacting to that. Don't forget that during the time I had to wait to get in the trial, a tumor blocked a bile duct and I had to have a stent put in. So I started the trial with my liver being at the limit and I was in a poor state. For me the worst SEs were nausea (I have worse nausea than many on all chemos) chest pain, dyspnea and fatigue. I also have pain sometimes but I can control it very easily with Tramadol and it only lasts a day or 2. One year later I am still very fatigued and have dyspnea but much less than in the beginning. Since they lowered my dosage the pain in the chest dsiappeared. So YES Coolbreeze. Go try it. I just add for you that Herceptin never worked for me before and that I am ER+.

Nancy L, I cannot tell you exactly when I became NED because the Drs were hesitating with my liver. I had resection and RFA so what they took for tumors was in fact scars. I think it took 4 or 5 months. Sometimes you keep very small scars that you cannot rule out without a Pet/scan or a MRI.
I had and still have pains. It comes towards the second week, can be very strong all over my body but I control it fast with Tramadol and it only lasts one day or 2. What are your last scan results? It seems it can be long for some, almost a year and real fast for others to become NED.

Phil, I am so happy Lorraines's CT is good! I follow her through your posts and it helped me so much to go for TDM1. I am now on a 3.0 dose also. There is a long way to have TDM1 announced here in France. I heard that the lab is trying to get Pertuzumab approved first and that they have not even filed for TDM1 approval! It might be 2 years...

I have a question for all who have been on TDM1 for more than a year: I have control scans every 6 weeks. I feel it is too much. I asked to have them every 12 weeks but after saying yes they said no because they just lowered the dose. Any information could help me.

Love to all. Michka