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Good day my sisters. I have 2 weeks until I start neoadjuvant chemo. The onc told me that carbo is barely effective so if I don't feel well, he can reduce it or remove it from the regimen. Now I'm told I can also refuse it. Anyone have any experience or knowledge about this? I want to beat the bc, but also want to minimize damage and side effects. I'm 54 and was born with Rheumatoid Arthritis. I've taken meds all my life, just stopped methotrexate in anticipation of chemo so preserving liver… read more
@A MyBCTeam Member I'm with Breastlink and they are state the art. Recliners, beverages, snacks and wifi. Also hand knitted caps made by volunteers. Everything a girl needs 😎
@A MyBCTeam Member since my onc already suggested it has low benefits and I can decline, I'm not looking for another onc to weigh in. I trust our sisters more 🙂 i sooooo appreciate you weighing in, it means a lot! *hugs*
@A MyBCTeam Member - that's exactly what I did - always brought my laptop. I don't know what your infusion room is like but ours is private cubbies with recliners and tvs but I play games and talk to friends and it really passes the time. At our place, I would get there and they would take my blood through the port and then you have to sit and wait for those results to come back. They may give you saline while you wait. Then once the blood work is checked they start the infusion. I can't remember how long the docetaxel took but probably like an hour. Then the herceptin was an hour and the perjeta a half hour but my place had a half hour wait in-between those. Figure you will be there like 4-5 hours. You are going in with a good attitude just try to roll with the side effects. They are miserable but keep remembering it's not forever. I'm always here if you have more questions. Hugs!!
@A MyBCTeam Member we are always on the same page! The first time onc said Taxotere I stood up to that because I knew of the lawsuits. My onc nurse was sitting with us and had a full head of red hair. She was testimony to the fact that Taxotere "may" cause permanent hair loss. The lawsuit is because the pharma company never told anyone so women did not have the choice.
I take 800 mg a day of folic acid because of methotrexate. My nails started to lift off when I started that. I'm going to continue and hope it helps. I have fine hair so not much to lose 😑
Chemo starts the 23rd. It's a 2 day event. I'll bring my iPad and MacBook to keep myself entertained.
@A MyBCTeam Member - One last FYI - there is a class action suit right now with Taxotere as it has caused permanent hair loss apparently with some women (google it). I was on Docetaxel and took biotin the whole time and didn't have the problem. My hair came back in thick and more curly. I think all the taxols are pretty much the same just wanted to give you a heads up on that too. Get some biotin (I took and still take 5000 mcg twice a day. Chemo starts 6/23?
I hear you @A MyBCTeam Member I also belong to the forums on breastcancer.org which are really informative as well. It seems that carbo is the first one to be backed off when things don't go well.
I'll have one last Q&A with the onc and then decide. The only thing that will convince me at this point is if he can emphatically state the treatment won't succeed without it. And he's already indicated otherwise.
I'll keep you posted on that. I've got my appointment, 9am on 6/23 the fun begins!
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