Chemo for TNBC

shaneswife828 · October 2017

I am a 32 year old mom of 6(my youngest is 1). I was diagnosed 8/22 with TNBC. Had bilateral 9/18 with TE. Node negative stage 1A. My hemotology oncologist wants to do 4 dose dense taxotere/carboplatin an then 12 weekly taxol. I would rather do the 4 dose dense taxotere/carbo and then 4 dose dense taxol. I have my chemo talk Monday and start treatment 10/30. I am terrified of side effects and want to get this done and over with so I can try to get on with life and enjoy my kids. My question is has anyone did it the way I would prefer? I felt like my doctor wouldn't give me options and just told me how it was done. I am hoping to be able to get it done in 8 biweekly doses rather than 16 doses. My husband currently is on Personal leave but he can't stay on it forever to help me care for our little ones. I life hours from family and other than my kids my hubby is all I have. Do I have a say in my treatment or do I just have to do it the way my doctor wants to do it. My risk of recurrence without chemo is 20% and with drops to 14%. Also are there other chemo regimens for TNBC the least I have to do the better. When I think of 16 treatments my anxiety literally makes me physically ill. I haven't really slept, ate much, or enjoyed anything in days because of all the concerns and especially my oncologist wanting 16 when I would rather do all dose dense.

Flynn · October 2017

I know that it's hard to face months of treatment and I only have 2 young children. I'm doing a different protocol and I'm currently halfway thru 12 Taxol with carboplatin every 3 weeks. I think it's fair to ask your MO if he/she has an objection to your plan & ifso, to explain why. I will say though that while different people experience drugs differently, I have found that I can care for my children with little help on the Taxol weeks. The carbo & Taxol weeks, Im exhausted and use more help. I also have run into issues with bloodcounts and I think dense dose might end up harder on your counts/ side effects as well. As anxious as I am to finish, I think I function better on the lower dose weekly treatments. Your experience may be different tho. I hope you work things out with your MO and feel comfortable with your plans.

NancyHB · October 2017

It never hurts to ask your MO about alternate treatment options; hopefully they will explain to you their rationale for choosing a specific regimen and, if they don't support your request, at least explain why not. If you feel strongly about your choice, explain your reasoning and see if there's a way to come to an agreement. Otherwise, you always have the choice to pursue care elsewhere. I did this with my MO with my second diagnosis (TNBC); he wanted surgery first then chemo, but I was caring for my mother and couldn't take the time off for recuperation so I insisted on chemo first. He agreed and it made my life (and anxiety) so much better.

On a side note I will share I did 6 dose-dense Taxol during my first diagnosis (after 4 dd A/C) instead of the weekly 12, as part of a clinical trial. The hope was the biweekly schedule would be easier time-wise for patients. The trial eventually determined that dd had more side effects than weekly Taxol, and I can attest to that. I ended upon pain meds to get through the last 5 treatments; bone and joint pain (not related to Neulasta injections) sidelined me for several days after each treatment. We thought it was a fluke until my second diagnosis when I did Taxotere, and had similar SE's. My MO concluded I have a sensitivity to the taxanes. So while there's a time-saving meausure, it isn't without potential SEs.

Good luck, I hope your MO actively listens and hears what you tell him.

AgathaNYC · October 2017

First of all I want to tell you how much I admire you for facing all of this with six kids. I am the youngest of six and never knew how in the world my mom raised all of us without our pulling the house down. You have already proved what a strong woman you are!

I have triple negative IDC, too, but my tumor is a lot larger. The plan I have is chemo first, then mastectomy. I am currently on 4 sessions of dose dense AC When that is over my oncologist is planning on 4 sessions of Taxol, perhaps with Carboplatin added.

If you haven't already had a real talk with your oncologist about the anxiety the prospect of such a long treatment cycle is causing you, I hope you do. It can't be good for you to be going without sleep and food at the though of it. It could be that the oncologist believes that delivering the chemo that way will also deliver less side effects for you. If your life is set up so that it's better for you to be have the prospect of more side effects over a shorter period, then make your case.

Also, you have every right to get a second opinion. Hopefully there other oncologists not too far away that you could consult. Never forget this is your body, your disease, your treatment and your unique situation. There is not a one-size fits approach to any of this awful stuff.

I hope you have a good day with your family!

shaneswife828 · October 2017

Thank you all. I am hoping he will work with me and that maybe he was just very busy that day and that's why he didn't discuss things with me. I would be okay with the Taxol weekly with carboplatin added on some days as well just not the 16 dose 20 week regimen. It as I said is literally making me physically ill. The 16 doses makes me consider not even doing the chemo which is why I want to find another option as I know I need to do everything for my kids to watch then grow. Cancer has already thing my life enough. It forced me to ween my son and has caused me to live in fear on top of letting my family and kids see me in pain(surgery) and now maybe in pain and sick from the chemo. I can't even look at my kids without having to walk away because I start crying. I hate being this damn scared. Im terrified this damn disease will come back and I don't want to leave my children.

NancyHB I see yours had Mets to bone. We're any of your nodes positive or did it travel vascularly? All my scans came out clear 2 and a half weeks before my surgery and my nodes were negative but every ache and pain makes me fear it spread. I can't imagine how you must feel as TNBC is so scary(well any cancer is) and all our biggest fears are Mets.

Fynn, I definitely feel I would rather get it done sooner. My husband is on personal leave due to my mastectomy and plans on taking it to help me get through the chemo as well since him and the kids is all I have(family is to far away to help). My doctor said with my already low stamina(severe asthma) and my anxiety having my husband home would be a must so he wrote him a note taking him out of work for the duration of treatment. We can barely make ends meet but are doing our best. We will be trying to send him back at least part time once we see how all this affects me. I would love to do your 12 week regimen. What is your diagnosis if you don't mind me asking?

AgathaNYC, thank you for the kind words. Having 6 kids is a lot of reward with a lot of work I wanted one more but the cancer diagnosis has made that a non viable wish. Maybe in 5 years when the recurrence risk has dropped and if I don't stay menopausal I will consider it(although I probably won't do it because of the damn BRCA1 Gene). I already feel so bad that I had kids and gave them the very real risk of carry the BRCA1 mutation. I didn't find out my dad was positive until he was tested for stage 4 colon with Mets to liver while I was 8 months pregnant with my little boy(my one year old and only boy). My dad was told his chances of being NED was almost 0 but by the grace of God he is NED. He was announced NED just a month or so before my chemo diagnosis. I have seen what this cancer does as I have lost family to it so I think that makes the fear of this TNBC so much worse. I didn't really get to talk much the day I met my chemo doctor as he seemed to be in a rush. He came in told me I was getting a port and having 16 rounds wrote me a script for nausea meds and out he went. I had no chance to ask about other regimens or anything. He is said to be one of the best so I am hoping my meeting with his nurse for the "chemo talk" Monday will give me other options. If not I will seek a second and third opinion. One of the reasons the other 2 chemo options would be better is because I have to find a babysitter. My mother in law lives nearby but is pretty useless and wasn't even going to watch my kids(especially my little boy) when I had my surgery and wanted me to do the surgery on my own. Thankfully my mom and dad drove the 2 hours here and stayed with the kids so my hubby could be there for me. They really need to find a cure and soon. I have read a lot of good things about PARP Inhibitors so hopefully they will start putting them to good use.

Flynn · October 2017

Hi, I have TNBC as well, started with an 8cm tumor or what turned out to be a couple tumors pressed together, 8cm long in total. Actually, I'm not on a shorter protocol- I only mentioned the Taxol part. Previously I did an investigative drug trial with a parp inhibitor and AC. Need to figure out how to add my diagnosis below! It's really hard going thru all this without family nearby. All of ours is a plane ride away. I ended up having to hire help after school but as I mentioned I only have two 7 yo's and my husband can't take leave. I agree that this is a very scary diagnosis so I really hope you can work things out to get all the treatment you need. I think you should be brutally honest about your logistical issues with your MO. Mine made suggestions about some resources when I was freaking out about handling this when my husband is never home. Keep us posted!

Chemo for TNBC

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