Chemo question
Hi everyone. I am 32 years old, dx Jan 28th of this year. I had a lumpectamy and sentinal node biospy (none postivie) and have completed 4 of 6 rounds of Chemo. *Over 1/2 done*
I have read through alot of the postings and notice that the treatment I am on is different than any discussed here and wondering why? I have never thought of it before but because this round is kicking me hard I probably am more concerned. I started with 3 x FEC100 and now moving to 3 X Taxotere. (which I hate, i will take nausea for a couple days over the pain) Plus I am on the GCSF to stimulate the bone marrow to help out my very very low white cells so double pain whammy! I see no one has mentioned this FEC100. I didn't question the Onc as I am not a doctor and now I am wondering if this is normal for TN folks.
Also people mention that a certain drug is not working for them and they switch it up. I don't understand this. When I asked the onc about knowing if it is working they tell me they can't and they just have to wait and see for recurrance down the road. I find it hard to feel this lousy and not know if it is doing anything or not.
Sorry if these questions are silly... I am just confused and want to make sure I have asked the right questions and that I am getting a treatment that will let me look back at this as a learning experience 40 years from now.
Thanks
Comments
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I did the FAC with A (Adriamycin) being the sister drug of the E(epirubison). I did 5 rounds of the FAC then did 12 weekly taxol. Then radiation. This chemo combo kicked my fanny but I had a great response. Some doctors are going to a new standard of TAC replacing the 5FU with one of the taxanes.
As for knowing if the treatment is working. That is hard to know with post surgical chemo. My onc did do another set of bone/ct scans at the end of my chemo to ensure that I was still non-metastic.
With the triple negative, there is nothing post treatment that we can do but watch and wait. There are currently no post treatment drugs to help us like there is for the er/pr positive.
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Thank you that is much clearer about the drug combinations, there are so many options I have read about and I just wanted to make sure.
I wish there was a simple blood test to see if the chemo was effective. Really are there no markers? I will make sure I ask about another set of scans after rads are done. How often do you get tested afterwards and what does that consist of?
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There are defintely 'tumor' marker tests that you can do. My onc does the CEA and the CA15-3 ever 4 months at follow up. Some doctors don't do them because they aren't 100% reliable. My onc explained that we aren't worrying if the markers fluctuate a bit from time to time but she is looking for 'trends'. If my markers start consistently trending higher or have a huge jump, then we will start looking for the reason. One of my markers was always in the normal range even when I had active cancer.
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Also, follow up will be determined by the type of bc you have and by each doctor. After I finished initial treatment, I switched oncologist because the treating onc didn't have as agressive a follow up plan as I wanted.
Also, the insurance companies are making it harder to get scans approved.
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Hi CanadianChick-
There's no one right answer for chemo treatment for trip negs. I'm a big fan of 2nd and 3rd opinions. I do a lot of research and always question my doctors!
I don't want to scare you, but from my experience of not being in the norm re: bc (particularly for us trip negs - but I'm also BRCA1), I would push for a CT scan. For many trip negs, such as myself, the CA27.29 tumor marker test is not a gauge. While I love being in the normal range (under 38), I have mets ... Other blood tests include the CEA and 15-3. However, for some of my bc friends, the tumor marker tests are a clear indication of whether their treatment is working.
Additionally, despite a clear SNB, I was dx'd with recurr bc and mets a year after finishing 38x rad'tn (after bi-lat lump's) and until very recently had clear nodes. I say this because I consider it the DIRTY SECRET of bc. While most women with bc, if it spreads, it will first spread to their lymph nodes. However, for a few others, the bc can spread thru the blood. No medical professional ever told me that and even now, they still don't mention that possibility. I had asked for a CT scan after my iniitial dx, but was refused.
The entire time I've had chemo, I've had to either do the self-injections of Neupogen or have the Neulasta injection. This includes dose dense AC; then Taxotere & Carboplatin; and now, Avastin, Abraxane & Zometa.
CalGal
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Thank you for the posts, I am going to speak to the onc about the tumor markers and see what they say. I find if I ask the questions they have no problem answering the questions but you have to know what to ask for.
Here is Canada our medical system is different. I don't have the opportunity to Doctor shop and get a second opinion. You get assigned your doctors and you go with it. However that is the only downside. I don't have to worry about insurance companies as our medical system is free which I am sooooo thankful for.
Before surgery I had Breast MRI because the biopsy bruised me so bad (even 3 weeks later) the surgeon couldn't feel the edges, she also sent me for Bone scan and abdomin ultrasound that were all clear.
I feel confident that it hasn't spread but it almost doubled in size from the original ultrasound (Mamogram didn't work) at the beginning of Jan to the actual surgery end of Feb. (or maybe the utrasound didn't see it all) Who knows what else happened during that time. I was a complete stressed out mess waiting and waiting and I am sure stress in my life has played a partial roll in this disease to begin with. I am going to begin to ask more questions and get myself educated.
BTW - Bone Pain stopped this morning! Just a bit of tingling, the ear infection and swollen throat is almost gone now I just have a really itchy rash on my chest and neck which is totally fine ( prob from the neupogen ) Today is going to be a good day!
Thank you CalGal and AlwaysHope
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