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Any mom's of TNBC daughters?

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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2011 at 12:36am
Now remember I had tx almost 11 years ago. When I did accupuncture, I did get recommendations, so didn't just use whoever I could find but one who was familiar and comfortable with my situation [ and I comfortable with her.] Needles were never placed in my arms whatsoever but in meridan areas [ mostly trunk] designed to keep energy flowing.  All needles were disposable. Any accupuncurist [ or alternative health practioner] that keeps current should be well aware of limitations for each health issue they may be working with.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2011 at 11:03pm
mom of tnbc,

Think your daughter's chemo starts Tuesday Nov.8 (unless there's been a change).

Sending tons of caring and positive thoughts to you and your daughter,

Grateful for today...............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote skline6381 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2011 at 11:24am
Yes my daughter did chemo for 4 mths and then double mastectomy and she is not BRCA or TP 53.  Her TNBC did not respond to the chemo at all infact in traveled to 3 nodes.  She is a non FDA clinical trial and has been for about 4 mths.  tomorrow she has a scan to check a nodule spotted on her lung.  I don't know how I keep it together but as a mom I know we do what we do.... Love to All, Sandy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 7:40am
Yes Judy she started chemo yesterday. Seemed fine in early evening .haven't heard from her yet this morning.  Go for neulasta this afternoon.  Thanks for your thoughts and remembering.
 
All the info about accupucture was great. we actually asked her nurse yesterday and she saidlots of her patients use it ans actually recommended a practitioners. we will double check with dr and then go for it! thanks so very much for all the input.  You ladies are great.  Such a good feeling to have this support
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 7:50am
Just heard that she was throwing up and crying through the night. Breaks my heart. She has meds for nausea but guess its not working too well. She is sleeping now so I won't bother her.
 
i have been so busy I haven't posted the good news from last week.  Bone scan and both CT scans clear!!!! I cried with relief.  How wwe hang on to the good news!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 8:03am
momoftnbc,

Please find out what anti-nausea meds she is on.  There are many choices available to prevent nausea.  I never had any problems with nausea.  If her current ones aren't working, they can add a different one or switch them up to ones that will work better.  Is she getting Emend?

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 8:17am
Thanks Donna.  I think it is emend. She took one early last evening and then couldn't take one for 8 hours.  The vomitting started before 8 hours up.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 8:19am
We go back to dr at 4 today so i will check for alternatives.  Appreciate your prompt post
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 8:21am
Hey while you are on, I am so new at this i don't understand the info you have at the bottom of your post.  Maybe you could explain the less obvious ones in English Smile  Its info I'm sure I could use when seeing posts.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 8:30am
Hi,

I just finished chemo a month ago and encountered very little nausea. I had Zofran every six hours (but I think many docs are getting away from this drug) and another for any breakthrough nausea. My chemo nurses told me to stay on it for the first two days whether I felt sick or not just to avoid it. Your daughter could also ask about the frequency of the drug. I guess the Zofran I took was an every eight hour drug but they told me that I could safely take it at six hours. The chemo nurses can be a very knowledgable resource! Definitely try to stay ahead of it- you don't need pukey on top of chemo crappy feeling! So sorry she is having a rough time, hopefully it is a very short thing and passes quickly.

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 8:41am
Emend is usually given the the day of chemo (part of the premeds), then in the morning on day 2 and day 3.  Because it's expensive and sometimes patients have high copays, my treatment center the last time gave 3 days dose in the premeds IV.  

I'd be happy to help with the abbreviations at the bottom of my post.  Can you tell me which ones?  Last year this time I had a recurrence in an Internal Mammary node (IM node) and had chemo then radiation therapy called IMRT (Intensive Modulation Radiation Therapy) using Tomotherapy.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 9:02am
Dear Mom, It doesn't sound like your daughter's getting Emend. Maybe phenergan (a perfectly good drug or zofran or another). Depending on what chemo she is on, Emend is a great choice and sometimes you still need the phenergan or zofran, etc.  Another thing to find out is if she's getting steroids prechemo and at home for a couple days after.  That, again, is something they can add on for nausea.  I think it's usually decadron.  Be persistent. Oh, my doctor also gave me reglan, which increases the speed of your stomach emptying which helped with the nausea as well as the constipation caused by a lot of these anti-emetics. (Hopefully they will recommend colace or another stool softener and not letting her get constipated - it happens easily and quickly and is miserable)
Good luck today.
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 12:42pm
Thanks for the advice.  She is taking Emend as well as Zofran.  Will try it every 6 hrs but right now she seems ok.  just very sleepy.  Maybe the worst of the nausea is over.
 
K Donna.
 My daughter 34 DX 7/11 stage IIA 2.7cm 0/5 nodes. BRCA1 + so bilat mastectomy 10/4/11. will have 4 AC every 2 wks then Taxol 4rounds every 2 wks. Recon .With BRCA1 she will have ovaries removed in a year or so. Bone scan and 2CT clear. 
What is an IM node? KI-67 48% and the whole last line are Greek to me. Do I understand that you had a bilateral mastectomy with chemo and reccurance with this IM1.5 years later?
I pray you are doing well now.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 12:45pm
Barbi
We are well aware of the constipation. It was quite an issue after surgery. She is not getting steroids. Am going to DR for the Neulesta so will ask about other stuff
Thanks
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 12:53pm
momoftnbc,

IM is an internal mammary node, strands are located under the rib cage in the center of the chest area.  http://www.breastcancer.org/pictures/breast_anatomy/axillary_lymph_nodes.jsp

Yes, I had a bilateral mastectomy with a recurrence about 13 months after finishing chemo.  KI-67 shows the rate of cell growth.  Most of us with TNBC have high percentages of KI-67.

http://www.breastcancer.org/symptoms/diagnosis/rate_grade.jsp

The last line of my signature talks about my recurrence, the chemo I was on Gemzar, Carboplatin and Iniparib (clinical trial), NED = no evidence of disease, PET/CT = a type of scan, IMRT Rads = the type of radiation treatment I received (Intensive Modulation Radiation Therapy/Tomotherapy).

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2011 at 1:58pm
Thanks so much. Got a clearer picture now.  I will pray for continued NED's for you!
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2011 at 11:53pm
Mom of TNBC,

Hope things are better. Your post from Yesterday (11/9/11) at 12:42pm sounded like you said maybe the
worse was over.
This is some information the nutritionist gave me about "foods" and nausea.   Of course, use the meds
as needed.......and actually use on schedule until you figure out what works best.   Nutritionist suggested
ginger products......ginger tea, ginger snap cookies etc.     For SOME lucky people this helps (in addition
to the meds). Also, the nutritionist said for people on chemo, this was only time she advised 5 salty
potato chips ( the "healthiest" brand re: oils used)! Never know who the ginger and chips may help....
so thought I would share the info just in case.
Regarding foods, if possible avoid one's favorite food as SOME people after chemo then associate
their favorite food with chemo and never have them again   On the hand, if one's favorite foods are
the only ones, one can eat, then there is little choice.
Before your daughter's next chemo, hope you can do something nice for yourself so you can replenish your own strength and energy.

With caring and positive thoughts,

Grateful for today.................Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wade Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2011 at 7:33pm
HI Momoftnbc,

They gave my wife the Emend and Aloxi via IV before her chemo, and it was supposed to last 3 to 4 days. It worked for her. She was also prescribed Ativan and Compazine. The recommendation was one Ativan tablet under the tongue at the first sign of nausea, as it then works very quickly. Then she could take an additional tablet every 4 hours. They said she could take the Compazine(10 mg)  every 6 hours.

I hope your daughter has found something to work for her by now...

Wade  
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2013 at 11:29pm
Moms with TNBC Daughters,

Thought it might be helpful to "bump" this thread up on the forum for any new (or not so new)
Moms of TNBC Daughters.

There are a lot of members who find it helpful to just read the forums.
There are other members who find it helpful to post on the forums.
The forums are here for help, support and information......use them however they help you most.

You might be interested in knowing about:
--There is a brochure on "Understanding TNBC".
     One can download a copy or request a copy at the following link:
    http://www.lbbc.org/Understanding-Breast-Cancer/Guides-to-Understanding-Breast-Cancer/Guide-to-Understanding-Triple-Negative-Breast-Cancer
--There is a thread with most of the abbreviations used on the forums:
     http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524.html
--There is a thread "Support-info for spouse/main support person" where Mothers may find
     something helpful.
     http://forum.tnbcfoundation.org/support-infospouse-main-support-person_topic9558.html
--It is good to know there are survivors/thrivers. One of the survivors threads is:
     http://forum.tnbcfoundation.org/survivors-needed_topic8221.html

A great resource for both the TNBC Daughter and the Mother......and the entire family is the
TNBC Foundation Helpline.
The Triple Negative Breast Cancer Foundation® has partnered with CancerCare to offer free, professional support services to patients, families and health providers coping with a diagnosis of triple negative breast cancer. The TNBC Helpline is staffed by experienced oncology social workers with specific knowledge of triple negative disease. In addition to counseling, TNBC Helpline staff can assist callers in availing themselves of the various other services CancerCare has to offer including, where appropriate, helping patients apply for co-pay assistance, transportation and other social services.
To speak to one of the expert social workers, please call the toll free number
Monday through Thursday 9am to 7pm EST and Friday 9am to 5pm EST.
                 877-880-TNBC (8622)

There is also a group for Mothers with Daughters with Breast Cancer.
This group is not specific to TNBC Breast Cancer.
MSDBC (Mothers Supporting Daughters with Breast Cancer) is a national nonprofit organization
co-founded by a mother, Charmayne Dierker, and her daughter Lillie Shockney in March 1995.
The support services provided by this organization are free and are designed to help mothers who
have daughters battling breast cancer. Over 10,000 women have already been helped!
They have a free booklet for Mothers.......and a free booklet for Daughters.
(I have not seen the booklets)
http://www.mothersdaughters.org/support/
If one wishes to consider participation in the Mother to Mother support program:
"Every effort will be made to “match” you with a mother volunteer whose daughter is close in age, has had the same type of breast cancer, and same type of treatment. Whenever possible we will connect you with someone in your region. "    (Thus, be sure to mention your Daughter has TNBC.)
Phone: 1-410-778-1982.
http://www.mothersdaughters.org/



With caring and positive thoughts,
Grateful for today...........Judy

Edited by Grateful for today - Jun 03 2013 at 11:34pm
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