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

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.

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.

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

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!

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.

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!

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.

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, 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.