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Hi Pam it is Shonda Gaylord. You and I have done alot of the same treatments since the beginning for me. I started out on taxol 1yr,& carbo 4mo herceptain (on going) I took 1 yr off from any chemo just herceptain.. Started Tykerb Xeloda for 6 days couldn;t take due to severe pain in back every time I would take my dose. Started Gemzar and did 2 rounds ended in Hospital developed ARDS and Gemzar induced TTP. Not expected to live. On vent for 8 days. In hospital for 3 months had to learn to walk again. It was HELL!! However I have been home this month for 1 year. In January I started on Navelbine and got 4-5 months out of it. Tried Xeloda for 2 days and had the same pain and it was all to familiar so I stopped immediately. Took off 1 month to move in June. Started back on Taxol and I am finishing 2 more weeks on it. My scans right now appear stable and suggest some healing, but my CEA tumor marker is also going up. My hemoglobin is 10.6 this week so it is takiing a steady decline over the last 3 weeks as well. She thinks we are getting all the benefit at this point. I have gotten about 5 months from this drug as well. She is wanting me to start a trial of 4 injections for anemia but I have to wait and see what it is next week b4 I will qualify. There is a 1 in 7 chance of placebo though. I am waiting on the name so I can research on my own. She told me it is having some possitive effects in bone mets. Now here in Dallas Texas the T-DM1 trial is closed she told me and you have to have measurable disease like in your liver or lungs which I don't so I am glad for that!! There is also another trial after the taxol she talked to me a little bit about last week and it is Heat shock Protein 90. I am still researching and waiting on more info from the onc office re: this. Have you heard of it yet? I am scared to do a trial due to my history and not knowing the possible side effects, but I am very interested in what I have heard so far. Now you said you have done Taxol/Avastin. That was the Hype for me in June but I was not cleared by my cardio doc due to BP issues from the TTP. So I was not able to take Avastin. I have been cleared now, but when I asked about adding avastin to the taxol now she said we'd have to change chemos and give avastin. It is so weird because symptom wise I am perfect. NO PAIN in my back which is a huge deal!!! The scans are showing stable, but some lytic activity it said. Why does the marker go up? What did the avastin do to you and how long were you on it? Are you short of breath right now? The carbo is what is causing your plts to drop. Your bone marrow is tired right now. Re they still u sing Neuprogen and arenesp injections? They have stopped arenesp here per data that out comes are worse. I have read both sides and sometimes in mets they still give it, but not my onc. She will transfuse now. When I was in the hospital I had over 54 transfusions. I have not had 1 since the day I left the hospital. Praise God. I had 21 days of plasma exchange and that was 13 bags of fresh frozen plasma daily. I was also given plts a few times b4 they know it was TTP and my body was eating them up and it actually makes that situation worse. My plt count got down to 2. Yours is low at 89 right now. Anything under 10 they completely worry of bleeding out. I am so fortnate as I sit here and type this. I apologise for going on. What other chemo options have they given you beside Navelbine? I kind of agree with your feelings of that drug.
Praying for you
Shonda