New Posts New Posts RSS Feed - New to TNBC Forum
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

New to TNBC Forum

 Post Reply Post Reply
Author
Andrea Sherman View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 11 2020
Location: NY
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote Andrea Sherman Quote  Post ReplyReply Direct Link To This Post Topic: New to TNBC Forum
    Posted: Mar 11 2020 at 4:38pm
I'm new to the forum today and introducing myself, wondering if my story resonates with some of your experiences. I'm looking forward to being part of this community, learning from, and supporting each other through this ordeal. 

I'm 56, and was diagnosed in Jan after noticing a small cyst-like lump above my left breast that turned out to be TNBC. After working this up locally, upon the emotional shock of diagnosis, I quickly pivoted to Sloan Kettering where I'm working with an incredibly caring team of docs, mostly at one of their satellite centers in the suburbs outside NYC. 

I'm recovering from lumpectomy of 1.1 cm tumor stage 2a, grade 3, and sentinel node extraction where 1 of 5 nodes had cancer. 

I was recovering well until yesterday awoke with a golf ball size seroma filled with fluid under my armpit that had to be drained multiple times and compressed very tightly to prevent filling again. It turned into an excruciatingly painful ordeal, had an awful night, thankfully better today.

I'll soon be starting chemo at Sloan Kettering with 8 AC-T treatments over 16 weeks, every other week. I believe I'll have 2 "A", 2 "C" and 4 "T" which is a big difference than 12 Taxols that I see some on forum have received. I'm meeting my oncologist again next week again to confirm the treatment plan that I'm healed and ready to start the dreaded chemo onset. 

I had hoped to cold cap thru chemo but my team told me the cold capping would likely not work with the strong ACT chemo based on their limited success with it at Sloan with ACT, feeling my hair will be gone by 2nd treatment and what's left would be very fragile. I'm curious if anyone has had positive outcome with cold capping on strong AC-T chemo?

I'm thinking about consulting with an acupuncturist to perhaps offset nausea and potential neuropathy from taxol. Any experiences with these welcomed.

My plan is for radiation after chemo. My radiation oncologist has shared with me 2 big studies guiding treatment for my diagnosis these days, ie, radiating breast and the axillary nodes x 20 treatments, or, radiating breast and entire regional nodes around breast practically to the neck x 30 treatments, the latter sounds quite horrible radiating up to the neck. 

Now, I'm trying to mentally prepare for chemo onset and the dreaded hair loss. I can't believe the idea of shaving my head after having long hair and bangs my whole life is what's freaking me out the most. Surely the act of having it shaved and first times seeing myself bald, along with my husband, will be the worst, and then I'll hopefully accept it and start decorating with my head wardrobe!

Trying to brave up for next step, one treatment at a time.....




Back to Top
Vivian View Drop Down
Newbie
Newbie


Joined: Dec 28 2019
Status: Offline
Points: 26
Post Options Post Options   Thanks (1) Thanks(1)   Quote Vivian Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2020 at 7:33pm
Hi Andrea, 

Welcome to join this caring family! I am sorry for your diagnose but happy that you are moving fast in fighting this disease! 

I am halfway of the chemotherapy and experienced hair loss after the 2nd AC. I felt the cracking/opening feeling on my follicles after 1st chemo; it was very strange feeling. After 2nd AC, my hair started to fall. I cut it short to about several inches, thinking the transition would be easier for me to accept. But I had to pick my hair everywhere. The short hair stuck on my sweater like needles. It was so annoying. But I didn't want to shave a completely bald head. I then found online this article and followed. It worked  well.  https://hatsscarvesandmore.com/blogs/news/chemotherapy-hair-loss-to-shave-or-not-to-shave 

My hair didn't fall off 100%. The remaining hair started to grow longer after 3rd AC but nothing significant. It may fall again after Taxol. I don't know. But now I don't need to pick hair every moment. 

It was emotional to face myself after the hair loss. I told my husband I was born with more hair than this! Now I am in peace with the situation, knowing it will grow back after the treatment. 
 
Back to Top
Andrea Sherman View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 11 2020
Location: NY
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote Andrea Sherman Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2020 at 2:53pm
Thanks so much for sharing this Vivian! And I'm sorry to hear you're going through this ordeal too :( 

I just watched the video and printed the directions. I'm feeling better even just thinking about having 1/2-1/2 inch after this method rather than shaving to being completely bald at first. I'll try her method of combing out with conditioner in, drying and lint rolling etc. Good idea to wear a wig/hat liner that I can easily clean. It sounds like following AC, you've remained with a bit of a buzz of hair like not totally bald? Sounds like the A is what really does this the most! Did you find any products that make your scalp feel good like oils/moisturizer? or maybe just continuing to shampoo/conditioner will suffice. All the best as you head into Taxol phase. 
Back to Top
Vivian View Drop Down
Newbie
Newbie


Joined: Dec 28 2019
Status: Offline
Points: 26
Post Options Post Options   Thanks (0) Thanks(0)   Quote Vivian Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2020 at 3:40pm
Hi Andrea, 

I am glad the link is helpful! I actually did a lot of shortcuts: I washed and dried my hair; cut it using #2 attachment, and then rolled with a lint roller bought from Home Depot. I did this after my 2nd AC. A and C are given at the same infusion so I am not sure which one causes hair loss. 

I didn't use conditioner after wash to coax the hair: I  didn't want to touch the sore scalp more than I have to, nor did I wish to look at the fallen hair in the basin. So I skipped this step. 

I had to roll a dozen of times (meaning to tear off the roller sheets multiple times) at first (right after cutting it with the attachment), then gradually I reduced to about once a day, for several days. Very thin hair remained and didn't come off under the roller. 

This whole process is more gradual than moving from long hair to zero. And it's less uncomfortable physically. 

Right now, all I do is to wash my hair every other day. Since I am not working, I use a thin cotton beanie hat at day time, and use a silk scarf wrap around my head, tie under my chin at night so it won't feel so windy. I am not using any oil since I don't like the feeling of oil on my hair (although it's very thin and sparse). 

When I go out, I wear a wig. A wig is always less breathing than natural hair so I am not adding a liner. I wash my wig after several use. It may require different arrangements if you work and need use wig everyday.  

Good luck to your hair management!  
Dx 12-27-2019 TN,Grade 3 Ultrasound 1.5cm, MRI 1.8cm, BRAC 1/2 negative
dose dense: AC x 4, ultrasound cCR; Taxol x 4
Lumpectomy:5-28-2020; 0/2 nodes. pCR
Radiation: 6-29-2020
Back to Top
Andrea Sherman View Drop Down
Newbie
Newbie
Avatar

Joined: Mar 11 2020
Location: NY
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote Andrea Sherman Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2020 at 7:04pm
Noting all these tips and feeling better knowing this process and hope works for me too! 


Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.