Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Starting AC-T chemo, wigs, side effects - please help!

Options
windwalker27
windwalker27 Member Posts: 54

Hello everyone,

I have just got my post-surgery report and it's not good. Three cm IDC and 4/5 lymph nodes involved. I am having a CT scan tomorrow to check for any mets. So it's stage 3 at best… I will be starting AC-T chemo as soon as the port is placed. And more lymph node dissection eventually and rads.

Questions. I need a wig. Do you have any suggestions where to buy? My hospital is very small and doesn't provide any service like wigs, prosthesis etc. Should I cut my hair short now before the start of chemo or wait until it starts to fall out? Any other suggestions, wisdom are welcome.

Thank you in advance,

Windwalke

«1

Comments

  • scaredme
    scaredme Member Posts: 65
    Options

    I did AC-T chemo two years ago for a similar diagnosis. It was tough, but not nearly as bad as I had feared. I was 48 at the time and kept working my desk job throughout treatment. I ended up with 8/20 nodes affected.

    I shaved my head around Day 17 after starting chemo when I found that my hair was starting to fall out. I found it easier to take control and honestly didn't mind being bald so much. As far as a wig, I would recommend that you get a hair halo and some hats. I bought both the halo and wig and found the wig to be so uncomfortable that I rarely wore it. Honestly, I preferred to wear hats.

    Etsy has some really cute hats.. They were really comfortable and I had lots of fun with different styles and colors. Here is a link my favorite hat seller:

    https://www.etsy.com/shop/EnglishTraditions?ref=si...

    And a link to a hair halo:

    https://www.headcovers.com/bob-hair-halo-hats-with...

    All the best to you. It is so hard to get the pathology back and have it change your treatment. They were saying stage 1 or 2 to me prior to my pathology coming back (4.2 cm tumor with 3/3 lymph nodes after the first surgery). Since I had to go in for an axial node biopsy anyway, I elected to have a bilateral mastectomy at that time. No regrets, but it is a very personal decision. Two years out from diagnosis, I am doing well.



  • windwalker27
    windwalker27 Member Posts: 54
    Options

    thank you Scaredme! I’ll look into it. My job unfortunately is with people, I teach. I am trying to reach my Dean and ask her if I can do online teaching.

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    And also I am very happy to hear that you are doing well, Scaredme. Thank you for sharing. I am reading this forum since my mammogram and itgives me hope

  • mozuke1
    mozuke1 Member Posts: 39
    Options

    I finished AC+T chemo in March and agree that it wasn’t too bad. I worked through it, though I only work part-time. I also work with people, in a library. I had a couple wigs and found them itchy, and uncomfortable, like I was hiding. I wore them exactly 3 days. I wore these scarf/hats https://hatsscarvesandmore.com/collections/head-scarves-for-women/products/celeste-cotton-pre-tied-headscarf?variant=39288518869176 forthe rest of the time until my hair started to grow back. I had enough hair 2 months after to go out and look like my hair was a fashion choice, not a result of chemo!

    I cut it a little shorter than my usual mid-back length when I started chemo and my husband buzzed the rest off with clippers about 3 weeks in.

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    Thank you for your advice, Mozuke1! How many treatments did you have if you don’t mind me asking? Is it 4 treatments or 6? I don’t know yet how many I will have

  • mozuke1
    mozuke1 Member Posts: 39
    Options

    I had 4 AC, every other week, and then Taxol every week for 12 weeks.

    One other point of caution…We all want to be prepared and such, and so I went out before chemo started and bought all the things I had seen recommended, aids for diarrhea, constipation, special mouthwash, etc. And now I have a bag of things I never needed. I was prescribed anti-nausea meds by my MO and I took Colace they recommended during the first part of chemo and never needed any of the other things. As much as you want to prepare, I’d say wait until you see the side effects YOU get. You won’t get all of them and may not have many at all.

  • scaredme
    scaredme Member Posts: 65
    Options

    I did AC every other week for 4 sessions followed by 4 sessions of Taxol every other week (Dose dense). The Taxol was significantly easier.

    I agree that they give you good drugs to manage the side effects. Are you hormone positive? If yes, I can also let you know what they likely will do after the chemo.

    Make yourself a chart. My daughter made me one and it really helped me make it through.

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    thank you, Scaredme. I am 98% Er positive, 30% PR positive and HEr negative

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    Thank you, Mozuke. A wise advice. Do you think I will feel all my side effects after the first infusion or it takes several infusions to know?

  • norcals
    norcals Member Posts: 206
    Options

    Hi Windwalker.

    If you're starting with AC (adriamycin and cytoxan), then you will feel it after the first infusion. I fasted 48 hours before and 24 hours after my AC infusions and it helped tremendously in preventing nausea and vomiting. It's not for everyone, but it helped me. Some use the fasting mimicking diet before the infusion which is probably more tolerable than straight up fasting. I lost my appetite during AC, so fasting was not difficult for me.

    If you are pre-menopausal, you may experience hot flashes after you start AC (I did), so the wigs may be very uncomfortable for you during hot weather. I started AC in late June and I couldn't keep my wigs on during the hot flashes - even in December after my AC-T was completed. I did like having a variety of wigs for the times that I needed to go to social events. I got a wig that looked like my natural hair (cut off all my hair after my first AC because it was falling out like crazy) and a second wig that was short, blond, and sassy just for fun. I purchased my wigs online after consulting with various natural hair wig makers. I also got a few cute hats to wear around during the summer and several warm beanies for the winter.

    AC-T is manageable and I thought Taxol was much easier. Do what you need to do to get through AC. I think you will be able to tolerate anything after that

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    Thank you Norcals. Did you also have 4 AC infusions and then T only? Is it a standard treatment? Is radiation easier than chemo

  • serendipity09
    serendipity09 Member Posts: 769
    Options

    Windwalker - I did 4 AC every other week for a total of 4 treatments and 12 weeks of Taxol with Carbo every 3rd week. My hair fell out the day before I had an appointment to have it all cut down (day 14 after my first AC tx; it was an emotional experience as I wasn't prepared for it mentally. I don't think anything can prepare someone fully for that, not to mention, I looked like Uncle Fester. I had already bought and received two wigs that were identical to my hair. They were from Jon Reanau. They were comfortable and very light even in the hot summer months; a bit costly, but well worth every penny to me.

    Most will tell you that their experience with radiation is much easier than chemo, unfortunately, I had a very negative experience with it and so for me, both chemo and rads were equally difficult, but in different ways. However, once I was done with radiation and it "peaked" I woke up one morning to find I was healing and on the mend; it was literally a day to night difference.

    It is all very doable though and you have a lot of support here.

    I hope all goes well for you! <3

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    Thank you Serendipity. We’ll see what’s in store for me

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    One more question for you guys. I know I will lose eyebrows. And they can be drawn. What about eyelashes? They will fall out too? Is there a solution

  • norcals
    norcals Member Posts: 206
    Options

    Windwalker,

    I had 4 AC infusions and 12 taxol. In 2019, this was standard of care treatment for my type of breast cancer - triple negative. Radiation is much easier than chemo. Some have side effects from radiation (mostly skin irritation) during treatment, and many have side effects months after, but the daily radiation treatments are really fast and you don’t “feel” anything while getting radiation.

    My eyelashes fell off completely at the very end (maybe last couple of taxol infusions). My eyebrows fell off slowly as well. My head hair fell off quickly, but there was a fringe around the front that did not fall off, so when I wore hats, I could let the strands peek out so that it looked like I had some hair. My eyelashes and eyebrows grew back immediately after I finished AC-T. It took longer for my headhair to grow back. I know that others had the reverse and their head hair grew back much quicker.

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    Thank you Norcals.

  • scaredme
    scaredme Member Posts: 65
    Options

    My eyebrows and eyelashes survived A-C, but were gone completely a few weeks after finishing Taxol. I got really good at make up during that time and they came back very quickly. In many ways, the loss of my eyelashes was more difficult for me than losing my hair.

    As the old saying goes, you do what you have to do. I'm still amazed that I got through it. Walking every day really helped keep my spirits up during a very difficult time (I did not go anywhere besides medical appointments during Covid for 4+ months and isolated from all extended family besides my mom). You can do this!!!

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    Thank you, Scaredme. I will do what it takes

  • scaredme
    scaredme Member Posts: 65
    Options

    Are they planning on doing an axial node biopsy for you? There are different schools of thought about it, but my initial sentinel node biopsy was bad.. 3/3 positive with LVI and extranodal extension of one lymph so they did the additional surgery to determine the extent. Unfortunately, I now have mild lymphodema in that arm so I wear a sleeve.

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    all I know is that the surgeon took 5 lymph nodes out. called later with the info that 4/5 are positive and suggested to take more of themout. The oncologist wants to do chemo first, take more lymph nodes after and then rads

  • katb17
    katb17 Member Posts: 1
    Options

    Good morning! I had my first AC yesterday. Stage 2 lymph nodes positive. Feeling pretty good. Kind of like a bad hangover this morning. :)

    I'm one to take it one symptom at a time. I did get microblading on my eyebrows before I started (ok by oncologist) since I was more stressed about loosing those then my hair. I love hats and my 9yr old daughter is excited to do wig shopping with me.

    Good luck on your next chapter.


  • scaredme
    scaredme Member Posts: 65
    Options

    That sounds like a good plan. Interesting that they never offered that to me. They insisted on doing the Axial Node Biopsy first. Maybe because my initial surgery was a lumpectomy so it was easier to go right back in? In my case, reading my path report pushed me toward mastectomy and I'm glad because they actually found residual cancer in my breast. The margins were very narrow!

    You should have access to a medical portal where you can read the actual pathology report, although I have to admit that there are times I wish I had never read mine. Definitely the type of thing that provokes anxiety.

  • moderators
    moderators Posts: 7,912
    Options

    katb17, we're sorry you have to go through this, but we're happy to see you joined this support thread to help you through chemo and beyond - Welcome!! If you need help around the boards, please do get in touch. We're here if you need us!

    Looking forward to hearing more from you soon.

    The Mods

  • spartybuckeye
    spartybuckeye Member Posts: 11
    Options

    windwalker - I too had positive nodes 2/3. I’ve got my port in and will be doing AC - T (AC 4 infusions every other week and then 12 weekly sessions of Taxol). After some back and forth I’ll be having an axillary lymph node dissection next week. My MO wanted it done before chemo, so I will start chemo about three weeks after. I will also have rads. As of now I’m stage 1b taking into consideration being hr+ and grade, if there are more lymph nodes it will change. However I’m not sure if it means anything because my treatment will not change. Thanks for posting this, I’ve gotten some good tips!

    Sacred - I’m scared of getting lymphedema. I fell in this gray area for the ALND. My surgeon seems very proactive about getting in the lymphedema clinic at anything that resembles swelling!

  • serendipity09
    serendipity09 Member Posts: 769
    Options

    My eyelashes/eyebrows thinned out during treatment, but they fell out completely after I finished. My eyebrows grew back lighter and the eyelashes on my left eye are thinner than the left eye, nothing mascara and eyebrow gel can't fix.

    Kate and Sparty- I hope all goes well with your treatments/surgery. Sending positive thoughts to you both.

    So smart to have had the micro blading before starting chemo. I wish I would've had the time to have done. mine. I started chemo five days after being dx'd and the shutdown in our state had just started, so everything was closed.

  • scaredme
    scaredme Member Posts: 65
    Options

    I had no issues at all with Lymphodema until I finished radiation.. (About 6 months later). I guess it is highly likely to happen with radiation.

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    Thank you guys for your wisdom and sharing your personal circumstances. I just had an appointment with my surgeon and saw the pathology report after my unilateral mastectomy. Feeling dizzy and overwhelmed. I am having a CT scan in the afternoon and I am just petrified what they might find

  • scaredme
    scaredme Member Posts: 65
    Options

    Keep in mind that only like 4% of breast cancer cases are Stage 4 de novo, so the odds are in your favor. I remember the fear too well though. I actually prayed throughout the scan and I am not a religious person!

  • windwalker27
    windwalker27 Member Posts: 54
    Options

    Thank you Scaredme for your support. I will do the same - pray and pray (not a religious person). I am just sitting on the couch, reading this forum and panting like a scared animal. Need to take control of my emotions

  • maggie15
    maggie15 Member Posts: 855
    Options

    Windwalker27, I'm so sorry to see that you had 4/5 positive nodes. As far as ALND vs extensive nodal radiation goes, there is a Dutch clinical trial which has not finished but has data from 3 years showing preliminary results regarding recurrence and lymphedema risk (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC89937...) The paper cites other research on this topic, too. There are also recent developments such as FDA approval of Verzenio combined with Letrozole for stage 2/3 with nodal involvement. The treatment possibilities are mind-boggling and decisions also depend on your age, possible side effects, health status, and comfort level.

    Once I knew exactly what I was dealing with (3 cm, 1/3 nodes, LVI, age >65, Onco 20, osteoporosis/arthritis) I asked my MO to estimate metastatic disease free survival from doing nothing to doing everything and options in between. He is principally a researcher and thought that this was a great idea. I made a treatment choice that I can live with, and he supports it since he knows it is an informed decision.

    You need to call on your colleagues to help you during the semester so you can focus on getting through this. This is a great site for encouragement and helpful suggestions no matter what you are facing. Best wishes for a clear CT scan.