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newbie here with TNBC

karen154
Posts: 1
Joined: Dec 2012

Hi. So happy I ran across this board. My name is Karen. I'm 46 yrs old. Live in Louisiana. Was diagnosed with TNBC in June 2012. Had double mastectomy July 18, 2012 with reconstruction. Had the expanders out Oct 223 2012 and implants put in also my port same day. Began chemo a week 1/2 ago on Dec 6th, 2012. Adramycin; cytoxen; taxotere. And neulsta (sp)? Shot the next day. My husband passed away so thank God I was able to go to my daughter and son n laws last week. I had extreme bone pain and sick for 7 days. Now I'm told my hair will come out soon. This is all sooo scarey. I'm trying my hardest to stay positive. Just praying everyday for God to give me strength. Ive been fighting leukemia for 13 yrs also but for some reason this scares me more. Maybe cause its a whole new ballgame. Ive never reached remission with my leukemia. On a chemo pill for that also. Enough of me babbling. My prayers go our to all of u! :)

helen e's picture
helen e
Posts: 223
Joined: Sep 2009

Karen,

Welcome, and so sorry that you are here. You've found a wonderful aite for support. The other people here are amazing! Feel free to vent, rant, update, let loose or anything else you feel will help you get through this horrible disease. We have all been there or are going through the same thing. Hughs & prayers.

Helen

jessiesmom1's picture
jessiesmom1
Posts: 726
Joined: Jun 2010

I was diagnosed with TNBC in Jan. 2010 shortly before my 51st birthday. I had a right mastectomy (with a tissue expander put in) followed by chemotherapy - 4 rounds of A/C and 12 rounds of Taxotere. My last chemo was in August 2010. No radiation. I ended up with "frozen shoulder" so I had shoulder surgery after chemo was over. Then came reconstruction. I had a reduction/lift on the non-cancer side and had the tissue expander replaced with a saline implant. I was very dissatisfied with the reconstruction so I had revision reconstruction with a different surgeon and a silicone implant. It was much better.

My hair started coming out on precisely Day 14 after my first round of chemo. I would run my fingers through my hair and it would come out in my hand. I had very thick hair to start with so it took about 2 weeks before it looked ridiculous. At that time I had my husband buzz off what remained. There is no doubt about it. It was awful. I cried. So much of how we view ourselves involves our hair. I wore my wig or a head scarf outside the house. Indoors I generally went "topless." It was about 6 months after chemo was over until I had enough hair that I felt comfortable going out with my natural hair. Oh, it grew back very wavy when I had previously had straight hair. Quite a change but it sure beat the alternative which was bald.

You can always try to be positive but on some days it just doesn't work. I remember on one chemo day my husband pulled the car up in front of the building and was going to drop me off and go to a meeting. I had been doing OK so he could do that. Instead, I broke down and said, "I just can't do this anymore." I started crying. He parked the car, came inside and missed his meeting. I will always remember that day. I was determined not to ever miss a chemo treatment because I wanted to get the whole ordeal over with. I wanted to see my daughter graduate from high school (she was a senior) and start college. I wanted to see my son graduate from college. That was 3 years ago!

You have already been through a lot. You have the support of all of us here on this discussion board - especially those of us with TNBC. Come here often. No matter what you have going on someone here has experienced the same thing: hair loss, watery eyes, bowel issues, mouth sores, etc. Good luck on the journey.

IRENE

kacee999
Posts: 110
Joined: Oct 2012

The Neulasta can cause bone pain. Don't hesitate to ask your MO for pain relievers. My hair came out about a week and a half after my first chemo. I immediately shaved it when it started falling out. It's a hard regimen, but know that the worse you feel the worse the regimen is hitting the BEAST. It was definitely do-able. Just take it a day at a time.

disneyfan2008
Posts: 5520
Joined: Oct 2010

Welcome....so glad you found this board. It has been a great help to me.

Denise

laughs_a_lot's picture
laughs_a_lot
Posts: 1369
Joined: Mar 2011

In Feb of 13 it will be 2 years since I got the news about needing a biopsy. I am back to my old self already. I had a fairly easy time tolerating treatment, because I came here the day after they told me I had cancer. So I was fairly educated about what was going to occur from reading all the posts here. It was helpful in keeping my mental health in order while my body was recovering from the various treatments.

I hate not knowing. I want to know about how long it will take to get a certain answer so that I am not over reacting. I like the fact that when we have a question here that is beyond what we should be advising, we tell one another to go to the doctor. It allows us to keep things in perspective.

Glad you had some family help since you lost your hubby.

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

Hi Karen,
TNBC dx here too. I was on 6 rounds of TAC w/ shot from jan 2012 to April and had my bi lateral w/ expanders in May. I developed infection in August and had expanders removed and recon has been halted for now. TNBC is scary but there are some long time survivors here that I am sure will chime in and cheer you on as well! Hang in there, don't let the chemo side effects get you down (literally and physically). Stay hydrated and eat whenever and whatever you feel like!
(((Hugs)))
Sandy

RozHopkins
Posts: 477
Joined: Dec 2010

Hi Karen. You seem to have already gone through a lot of the treatment, now just the nasty chemo. You already have experience of oral chemo. I hope it goes as well as it can for you and glad you have family around you. Chemo over Xmas yuc but all over with new hair for Spring. Any questions please ask. Ladies wonderful here. Merry Xmas.

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