Starting Tomorrow
Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Let's Talk About Chemotherapy
Forum Description: A place to discuss Chemotherapy
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=11172
Printed Date: Mar 26 2026 at 9:07pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com
Topic: Starting Tomorrow
Posted By: annafriday
Subject: Starting Tomorrow
Date Posted: May 12 2013 at 11:14pm
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Hey everyone... I got my port last Friday. It didnt go so good. I took Benadryl and Zyrtec the night before because my allergies were acting up. Next morning they couldn't get and IV in me(super dehyrated) and even going in my neck Dr did three attempts then finally asked for a smaller catheter. Well now Im in more pain than after my mastectomy. They also couldn't give me the normal prophylactic iv antibiotic or versed because of no IV access. Now Im feeling a little feverish/tired n hoping my port didn't or wont get infected. Im supposed to start Monday on AC. I was also supposed to get a second opinion at UCLA but My oncologist told me that no matter what I would be on the standard AC and it would not prevent me from being in a clinical trial. Im trying to see if anyone has any ideas here. Does anyone know anything about chemo sensitivity testing? I also asked my doctor if there are any vitamins or herbs I should not take. He told me no antioxidants the day of. That doesnt make sense to me logiclly. Anyone have any insight here. Does everyone loose their hair on AC? It is really disturbing to me that I am about to put toxic meds in my body and its a coin toss if these drugs will have any benefit. Still have sooooo many questions and super scared as I know everyone in this situation is....arg!! ------------- DX:3/20/13 right breast multifocal stage 3a TNBC. Bilateral Mastectomy 4-18-13 largest tumor 6.2cm. 1 microscopic sentinal node positive. KI-67 77%. ACx4..doing Taxol now x12 weekly. |
Replies:
Posted By: Grateful for today
Date Posted: May 13 2013 at 1:07am
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annafriday, Sorry to hear you had problems getting your port. I do not have any advice for you..........just some thoughts and considerations: - If any one has a lot of questions that have not been answered, it certainly sounds reasonable to me to get answers before starting chemo. - On May 8, 2013, you posted: ......."Getting a port placed and 2nd opinion at UCLA with a TN Specialist to see if she has a different opinion or clinical trial for me. My Vegas Oncologist wants me to do 6 cycles of AC every 21 days. ......" Sorry I do not understand your oncologist not supporting a 2nd opinion. Maybe your current oncologist did not really listen to what you were saying.........maybe you need to ask again for help in getting a 2nd opinion. Maybe also asking how many TNBC patients does your onc treat in a year. Think you mentioned in your initial post about insurance matters and an HMO. Thinking by any chance do you have a good patient physician relationship with your PCP/primary medical physician or a gynecologist? If the oncologist you are now seeing, is not able or willing to assist you in getting a 2nd opinion, would your PCP or Gyn MD help? Or does your current oncologist office have a nurse navigator or social worker or patient advocate that could assist in expediting a 2nd opinion? - Thinking this is what I would want my oncologist to write down for me before I start ACx6 chemo: What are the doses/frequency of adriamycin and cytoxan I would be getting? (Doses of chemo are calculated according to mg/m2 (milligram per meter squared.) Then ask for a copy of the reference the oncologist used to recommend this treatment. (It is just that one usually sees mention and use of the AC Dose Dense q 2 weeks x4 and T dose dense every 2 weeks x4 (or T weekly x12) or TAC q 3 weeks x6. And due to individual situations, other treatment plans may be recommended or one may participate in a clinical trial with other meds protocols.) Your oncologist may have good reasons for the AC x6 plan but I would want to know what was the source and references for AC x6 and why onc feels this is the best plan for you and not AC-T or TAC. Would ask oncologist if the dose and frequency of AC could be changed IF a 2nd opinion presented documentation/references for other dose/frequency of AC. If chemo plan is still on for Monday: Most important: BEFORE they check your temperature ..........ask what is the temperature above which chemo would not be given. (Will hope your port is OK and this comment was unnecessary) With caring and positive thoughts, Grateful for today............Judy |
Posted By: Natalie
Date Posted: May 13 2013 at 8:25pm
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Started losing hair after the second treatment, nearly gone on the next. Sorry for all the hard times for you. I hope you feel better. It is really hard to wrap your head around such a thing. I mean, we are taught to eat healthy, exercise and be mindful & here we go putting poison into our body that will potentially throw everything off. Not only attacking the bad (hopefully) but also the good stuff. It is a hard one, a battle that many of us felt. I personally did it because I wanted as much chance as I could get that I was comfortable with. Anxiety meds became my best friend on days before and after treatments. Yoga and Reiki helped me alot. ------------- TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg |
Posted By: Kellyless
Date Posted: May 13 2013 at 11:40pm
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Chemo and TNBC isn't a coin toss, there's lots of solid research showing it saves lives with our disease. Everyone dreads chemo, AC is particular, but with the tremendous anti-nausea meds we have now it is totally "doable". Get that second opinion no matter WHAT your Dr says. Maybe especially since he didn't support it. I've not met anyone that didn't lose their hair on AC and Taxol. I dreaded it as much as anyone, I have great hair! It ended up being NBD after the shock wore off. In the end it was just another new experience, I just had fun with it. Considering all the other physically crappy things we go thru In Treatment, I just enjoyed the easiness of quick showers, no shaving or futzing with my hair while I was sick and tired from surgery, chemo and the massive amount of time getting medical care. I'm almost at four years from the end of treatment and my hair is long and thick again. The dang leg hair all came back too unfortunately! ------------- IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
Posted By: annafriday
Date Posted: May 14 2013 at 11:18am
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Thanks Judy, I agree about the second opinion. Im thinking my doctor wants me to start so quickly since I am stage IIIa, and the rate that my tumor grew especially after it was pocked at by needle biopsy. Again HMO probably being my biggest problem or obstacle. I think he is OK with a second opinion but feels I need to get started ASAP for a better outcome. I will ask him for sure. If UCLA doesnt get me in within the next couple days I am going to pay out of pocket to see another oncologist locally. One that cares for or focuses on breast ca. I did go ahead and start AC just because it is the drug the majority of bloggers start on from all the posts with a few variation if they are on a clinical trial. My dose is doxorubicin(AC) 11mg and Cyclophosphamide 1110mg. They also gave me Decadron and 16mg of zofran- steroid and antinausea meds. At home I am on anti nausea meds as scheduled. I felt good last night, but 2am felt like I had the worst hangover ive ever had. Took meds and feel ok this morning just a little off. I am still going to get 1-2 second opinions. I know I may be sol with any clinical trial now..but its so hard to know what to do especially with the aggressivness of TNBC at my stage. I am going to look in low dose asprin..copper removing meds...and a few other newer things out there im reading about. I am also looking into alternative/integrative therapies and reading up on those things. There is so much information out there it makes your head spin and some things contradict each other and its difficult to know who is right when everyone has a bias and can spin data to their personal goals or agenda. I feel I can still be switched to dose dense or other protocols if need be. I appreciate you Judy and everyone else with personal experiances, thoughts, and opinions!! lots of love and hugs to us all. ------------- DX:3/20/13 right breast multifocal stage 3a TNBC. Bilateral Mastectomy 4-18-13 largest tumor 6.2cm. 1 microscopic sentinal node positive. KI-67 77%. ACx4..doing Taxol now x12 weekly. |
Posted By: annafriday
Date Posted: May 14 2013 at 11:39am
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Kelly, I am looking forward to the ease of getting ready and not having to shave especially since I am very hairy. Lots of thick corse hair on legs, underarms, etc. I will save lots of money on waxing and those darn razors are so expensive...lol The hardest part will be the stares and people feeling sorry for you. I know the data isnt quite 50/50 as in a coin toss. I just mean that its a coin toss as far as I dont know if Im going to be in that group that the chemo was completly ineffective for. You know what I mean. I am the type of person thats hopes for the best but prepares myself mentally for the worst. I don't know if thats a good thing or not. I am very spiritual and open minded and trying to stay as positive as I can without letting fear take over, but its hard. I think at some point I will stop being obsessed with the research and back of a little but for now I feel its what I have to do.  Anna ------------- DX:3/20/13 right breast multifocal stage 3a TNBC. Bilateral Mastectomy 4-18-13 largest tumor 6.2cm. 1 microscopic sentinal node positive. KI-67 77%. ACx4..doing Taxol now x12 weekly. |
Posted By: MLindaG
Date Posted: May 14 2013 at 6:22pm
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Anna, I had a problem getting my port too........I don't numb easily and even though I told them about the "red hair" gene.........they didn't take me seriously.........I felt it all......very painful.......he came and apologized after but that didn't help me in the moment. It took me over three weeks for the port area to become pain free. Would I do it again? Yes...... It is much easier to get the chemo. I have heard that you shouldn't take antioxidants during treatments as it can reduce it's effectiveness but I didn't hear this until after I finished my chemo.........I had asked my onc if I can take fish oil.........no problem........I took 2 everyday.........had a CPR to the chemo........ As for the hair........I was told 14 days after I have my first dose I will start to lose my hair. On the 14th day in the morning I pulled my hair and none came out.......cool I said.......4 PM I pulled my hair and a whole clump came out!!! Next day........got it all cut down leaving 1/2 inch on all over...... .didn't want all the hair all over the place....... I'm not sure why your oncologist hasn't said to you what mine said to me............Chemo works best on rapidly dividing cells........TNBC cells are rapidly dividing....... chemo is your best defense against this cancer. No coin toss here! I did what I had to do........results Complete pathological response. I maintained a very positive attitude throughout - my white cells eating up the cancer cells....... I received a lot of wonderful cards from friends and family.......I would write down any positive thoughts from the cards onto index cards and took them in my purse everywhere I went. If I was starting to go to negative thoughts I would get them out and read the positive thoughts to keep my mind in a positive mode. I went to a hypnotist in my area that had free group cancer sessions and received some free CD's which I would listen to almost every night.......very positive affirmations......he felt there is a big mind and body connection and we can help our own healing with positive energy. Stay positive! Write things down in a journal so you can refer to them later.........as you have already seen.........that A/C can make your mind a bit fuzzy.........or should I say "Chemo brain"!!! Good luck. ------------- Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative. |
Posted By: Grateful for today
Date Posted: May 21 2013 at 1:57am
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Anna, Good to read your " I am still going to get 1-2 second opinions." Knowledge is power. It would be great if that could be done before your 2nd dose. Keep asking nicely for the appointment ASAP and remind them you are TNBC. If need be, speak to supervisors/head nurses whomever you need to get the appointment. This is repeating what I said above: Your oncologist may have good reasons for the AC x6 plan BUT I would want to know what was the source and references for AC x6 and reasons your onc feels this is the best plan for you and not AC-T or TAC......and have onc re-confirm/write down your AC dose. You said: "My dose is doxorubicin(AC) 11mg and Cyclophosphamide 1110mg." Wondering if there might be a digit missing from the doxorubicin amount? Hope you are feeling somewhat better now about one week post 1st chemo. With caring and positive thoughts, Grateful for today...........Judy |
Posted By: Grateful for today
Date Posted: May 28 2013 at 10:58pm
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Anna, Sending caring and positive thoughts to you. Grateful for today..........Judy |