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AngieR65 View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote AngieR65 Quote  Post ReplyReply Direct Link To This Post Topic: New here
    Posted: May 03 2016 at 2:25pm
Hi, My name is Angie, and I'm newly diagnosed with Stage IIa, grade 3, TNBC in my left breast. A 3 cm lump and several satellites were found on a (long overdue) routine mammogram. I'm large breasted, so I didn't feel a lump...just some thickening and intermittent pain in the days before the mammogram. Needless to say, I was shocked. I'm 50 and pretty healthy. On the biopsy, the one node they sampled was negative, which is good news for now.

I started neoadjuvant chemo on 4/25. I'm getting A/C every 2 weeks for 8 weeks, then T (plus Carboplatin) every week for 12 weeks. So far, no nausea, and moderate fatigue. Taking Zofran and Compazine, plus Decadron. But, I had bad side effects from the Decadron. Mental fog where I couldn't follow a conversation, feeling "wired" and not able to sleep, hands shaking, etc. Plus the worst constipation. On my next round on Monday, my oncologist is giving me a new nausea med...can't remember the name, but it is 1 pill taken 1 hour before chemo, and that's it. Fewer side effects, and I won't need the Decadron. Working with insurance right now on this, since it's $500 a pill!

I'm an educator, and have 4 children, 2 boys, 2 girls, ages 24, 22, 19 and 16. They are my reason for fighting this! I also love gardening, knitting and my two cats!
Dx April 7, 2016, routine mammogram. Stage IIa, grade 3, IDC, TNBC left breast. 0 lymph nodes. BRCA negative. 4 doses A/C done 6/6/16. 0/12 Taxol, 0/4 Carboplatin.
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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2016 at 4:13pm
Hi Angie, welcome!
Sounds like you have a good team in place and you're going through the normal figuring out stage of what meds will be covered by insurance and what your body can tolerate. $500 pill seems outrageous but so many stories here have educated me to understand that most of the meds are in that realm.
You're wise to keep track of the side effects, I know I kept track of my BP & temp every day and that came in handy when I had a spike over a weekend and had to call in to the on-call onc at my clinic.
Sounds like you have a household! Please feel free to go over to my Krakatoa thread and let your kids know they're welcome to participate as well. It's a fun read from beginning to end and hopefully will give you a break from the stress you're under.
I'm in the midst of clearing out a new flower bed today, it's a beautiful time of year, hope it helps add to your strength!
Best,
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote barrycarrot Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2016 at 8:59pm
Welcome to the group! Everyone here is great. Sounds like you have your chemo plan underway. I hope the new pill will help you. Keep fighting sister! carrie
Age 38, DX: 12/10/15 Stage 1 TNBC, BRCA-, 7mm tumor in left breast, no nodes, ACT Chemo 1/4/16 - 4/15/16, Lumpectomy 5/16/16, PCR (Praise God!), radiation 6/22/16 -8/3/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunrise Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2016 at 9:50am
Hi Angie welcome to the group, its a great group to belong too.  Your diagnoses sound about the same as mine.  I'm also getting AC + T, Ive only had one chemo treatment and that was Monday so far no nausea the Dr gave me Zofran also.  I would be interested in knowing what pill he will be giving you.  It would be great to only have to take one.  

Keeping positive thoughts
Jackie
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AngieR65 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AngieR65 Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2016 at 10:27am
It's called Akynzeo, and you take one pill one hour before chemo and has fewer side effects. The good news is that my insurance will cover all but a $60 co-pay per pill. But, the drug manufacturer has a program where they will even cover your co-pay. Not sure how new of a drug this is, but my oncologist suggested it when I told him about my bad Decadron experience. 
Dx April 7, 2016, routine mammogram. Stage IIa, grade 3, IDC, TNBC left breast. 0 lymph nodes. BRCA negative. 4 doses A/C done 6/6/16. 0/12 Taxol, 0/4 Carboplatin.
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AngieR65 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AngieR65 Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2016 at 10:34am
Have fun in your flower beds! I love doing that, too. I did mine earlier this spring when we had a teaser of warm weather. I'm looking forward to getting some annuals planted in my containers. 
Dx April 7, 2016, routine mammogram. Stage IIa, grade 3, IDC, TNBC left breast. 0 lymph nodes. BRCA negative. 4 doses A/C done 6/6/16. 0/12 Taxol, 0/4 Carboplatin.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote S@ndra19 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 02 2016 at 9:00am
Hi I am look for some advice on ixempra treatment

God bless
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trisheey Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2016 at 12:00am
There is also a drug called Varubi on the market.  The drug is made and manufactured in Canada, but FDA approved and marketed in the US.  Because the drug is not made in the US, the FDA does not allow samples to be given to providers, but the manufacturer offers copay assistance as well as a 1x free drug.  Its given in 2 pills before treatment.  I am an oncology nurse who is currently undergoing treatment for stage 2a TNBC and I was talking with the drug rep.  He explained that the pill not only treats the physical side effects of nausea and vomitting, but also the psychological side effects- the feeling of waiting for the other shoe to drop.  Has anyone taken this??  I get IV emend with my carbo/abraxane treatments along with benadryl and steroids to ward off nausea.  I am starting Adria/Cytoxan in 3 weeks and I understand that the side effects are worse.. I'm wondering if varubi is a good way to go?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Holthiede Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2016 at 10:52pm
New to this site. Happy I discovered it. I was diagnosed tnbc in March. Started chemo immediately. Grade 3 tumor...but they think I caught it at Stage 1. My plan.....4 rounds of Red Devil/Cytoxin (completed) , 12 weeks of Taxol (on week #8), Lumpectomy and radiation. I am a 50 year old Kindergarten Teacher...and in almost 20 years of teaching, I only missed one day for illness. Then came my diagnosis. I think the hardest part for me was accepting my new "normal" way of feeling....which was always pretty crappy. My goal was to continue teaching my Kindergartners (full time) until the end of the school year in June. I did it, but it wasn't easy. I also continue to run a few miles a day to keep a feeling of "normal" in my life.
So...with 4 more Taxol treatments to go, my side affects are ramping up. Exhaustion, giant rash all over my face, bloody noses, lack of sleep, etc. These things, along with no hair anywhere (no lashes or eyebrows) has been getting me a little down. Good friends and family are supporting me. Trying to stay positive for me and my two teenage boys.
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AmyL View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2016 at 11:51pm
Hi Holthiede,

I'm glad you found our site. We are an group of crazy ladies all climbing the same TNBC mountain. Lots of support, and no judgement! I was dx in Dec 2015 and am scheduled for #8 Taxol tomorrow too! I had lumpectomy before chemo so will head to radiation once Taxol done. I am amazed that you were able to continue teaching through AC. I was literally on my couch for 10 weeks! And running too. I'm in awe. I have a 15 yo daughter and a 23 yo daughter who is living at home as she gets ready to start her first year teaching 1st grade. Along with my husband of 28 years, they provide me with constant support. I haven't been too upset with the hair loss, but in the past 6 weeks I've had growth of this white, fine fuzzy hair on my head! What's up with that? I find myself saying "it must be a Taxol thing" a lot these days. I suffer from wicked insomnia for 3 nights after each chemo treatment due to the dexamethasone. I didn't care too much when I wasn't working, but now it's more of a nuisance trying to stay focused at work with no sleep.

Please keep us posted with your progress, and ask lots of questions. There are some amazingly knowledgable ladies on this site and there is always someone who has likely experienced anything that comes up and can provide insight.

Amy
Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2016 at 7:18pm
GREAT you caught it at stage 1, please don't be too hard on yourself, as the treatment for TNBC might necessitate YOU are more important than students.

Not judging, if it seems so... we gave up a business, and previous life, to deal with this...
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2016 at 8:23pm
Hi Holthiede, glad you found us but sorry you had to find us in the first place, that is, that you have a TNBC diagnosis.

I'm also a teacher and don't know how you continued to teach. I didn't. I was flat out, like Amy, unable to sometimes barely make it to the bathroom, never mind teach! I'm so impressed and you were also able to run????? How did you do that? 

I understand when you say you are trying to stay strong for your family. I think we all do that, especially when we're a Mom. 

I am sorry you have to deal with all these side effects and yes, they certainly can take you down from time to time. It's ok to let yourself feel those feelings, just don't stay down there too long. Don't be ashamed or afraid to post how you're feeling here, we've all been there. In fact, I often didn't post when I was down but then when others honestly shared they were struggling, it felt much better for me to share how I was doing. I now have about 3/4 inch of hair on my head, it will start to re-grown during taxol treatment, including your eyebrows and eyelashes (both of those grew back in less than 2 weeks once they started). Hair is well, just hair. It will come back - for me, I know that  I'm thankful it's now summer here so it's not as cold on my head. I'm about to start Xeloda treatment and my Dr warned me that I may lose most of my hair and you know what? It didn't even phase me, it was like "ok, let's do this, I've lost it once before and I can do it again". Now, the lack of sleep thing....oh man, that's nasty.  Just be gentle with yourself, listen to your body as it will tell you what it needs. Don't hesitate to rest/nap, don't fight it, it's very important. Make sure you also keep yourself hydrated so that you can flush the chemo out of your body and the water will help heal as well.  

Gordon said it so well 'No judging (here)....", we're all here to support you however we can, ok? Be well.
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote S@ndra19 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2016 at 1:36am
Hi I am taking xeolda and very time I finish my set my ulcer is so unbearable,can someone help with remedies
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