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Any mom's of TNBC daughters?

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Topic: Any mom's of TNBC daughters?
Posted By: thepeddlerswife
Subject: Any mom's of TNBC daughters?
Date Posted: Oct 06 2011 at 12:08am
Wondering if there are any moms of young daughters that have been diagnosed with TNBC? Haven't found any forums that support moms. I am a caregiver but I AM A MOM! It broke my heart when she sent me a picture of her hair falling out today. I have been there for her testing and her first chemo. I am going to miss her second chemo this Friday but will be there in 5 days. I feel guilty. Overwhelming guilt.
She assures me she will be fine and in reality is being stronger that I am. She has her kids, 8 and 6, to keep her grounded and a very supportive BF who understands because he lost his mother to Leukemia 5 years ago.

So, any mom's out there? I would love to start a support group online for moms!

Kim



Replies:
Posted By: kirby
Date Posted: Oct 06 2011 at 12:33am
I don't remember any mom's recently but we have had some mom's in the past. Do feel welcome to come on anytime. There are several caregivers or support people that post.
 
So sorry your daughter was dx.
 
I was a single parent when I was dx 11 years ago. My daughters were 9 & 13. I tried to keep everything normal for them. I guess I was successful because I sometimes feel they weren't affected at all.


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: thepeddlerswife
Date Posted: Oct 06 2011 at 12:39am
Kirby, thank you for responding. How did you handle it as a single mom? Did you have help every day? I feel like I should be there every day and I can't. It's the worst feeling in the world. You are supposed to be there for you children and what is going on in my life is interfering with that. I will be there as much as possible but I feel so guilty not being there every day.


Posted By: kirby
Date Posted: Oct 06 2011 at 1:29am
I am never sure how to say this other than put it out there. I hesitate because it always sounds so shocking, even to my ears but I tend to live in denial and move forward. My mother had just passed away between the time I found my lump and had the excisional biopsy. She had struggled with ovarian cancer for 3 1/2 years. On the one hand I was somewhat cancer familiar and my daughters were used to seeing a bald head. On the other it was OMG cancer.Telling the kids was the hardest because i didn't know how they would react, especially with their grandmother just passing. My oldest had written a report for school on cancer so her reaction was positive. that at least breast cancer was better than ovarian. I seized on that. My aunt came and took care of my kids while I had surgery and stayed for a week. I felt that was enough. I am fortunate to have great friends who were willing to step in. Being a single parent I was used to taking care of things myself. One of my friends insisted on taking me to every chemo appt. I had chemo on Monday morning and went to work on Wed. The last chemo [ I only had 4] I didn't go to work until Thurs. I had a housecleaner that came every other week. Someone usually made dinner for us the chemo week. At my kids ages they were more self sufficient. There was only one time I had to pick my oldest up from a function after work and I was fading really fast. I had barely energy to talk. I told her she had to get in the car fast because I had to get home now. She was sweet. At 13 she offered to drive ! I usually would come home and lay on my bed. A darkened room with total quiet was great. I never fell asleep, I just needed time to regroup. The chemo wasn't too bad. I did accupuncture directly after every treatment to maintain my energy level. I didn't hesitate to call friends when I really needed something. Most people were really great. The time passed quickly. Haha. easier to say now.
 
It sounds like your daughter feels confident she has things under control. Interestingly, the person with cancer usually feels they need to comfort those around them that are freaked by their diagnosis. I am sure your daughter knows you are doing what you are able.


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: chloey
Date Posted: Oct 06 2011 at 1:50am
Kim, My daughter was diagnosed with TNBC in November of 2010. As most here know that year was a whirlwind of emotions. My daughter was stage 3 with 4 positive nodes. She has finished her treatment of 8 rounds of chemo (4 AC and 4 dose dense Taxol), a double mastectomy, and 30 rounds of radiation. She has yet to do the reconstruction. She will eventually have a hyst. in order to lesson her chances of recurrence elsewhere.
I say all of that to say this - You will ALWAYS be a "Mommy" - no matter the age of your child. You do the very best that you can do and she will know that! Be there when you can - but realize there are times that she will need you to watch the children or just go with her to purchase mastectomy products (if needed).
Losing her hair was rough on my daughter (not because she is vain) but because her 5 year old told her that she couldn't be a princess with no hair. So we took the little one and got my hair cut in a neck-line and told her that mine would grow back just like Mommy's would. :-)
Believe me, her Dad and I shed lots of tears - but we tried to do it in private. She has a wonderful husband and a lot of support as it sounds like your daughter has as well.
One thing that my daughter said was that sometimes she just didn't want to think or talk about cancer! She needed to have a conversation that did not include cancer. She also wanted her girls (4 of them) to be able to go on with their activities as much as possible. Of course, this meant that Mom, Dad, sister, best friend, etc took up the slack when she or their Dad couldn't be there. We were blessed with so much support of our own!    
There will be times she may just want to be alone - don't be hurt if that is the case.
I would have given anything (as I am sure you would) if I could have just taken the cancer from her but we all know that's not possible! Do NOT feel guilty when you are doing the best that you can do!
I hope I have helped some ... excuse me for writing a book.
Mom of one amazing woman!!!
Chloey


Posted By: thepeddlerswife
Date Posted: Oct 06 2011 at 2:01am
Thank you for the amazing response. I am at a total low at this time. Not sure how to deal with this. Your response gives me hope.



Posted By: dmwolf
Date Posted: Oct 06 2011 at 12:46pm
Please try not to feel guilty.  There are enough bad feelings associated with bc that it would be better for her, and you, if you skipped this one.  Depending on your relationship, she might actually prefer some privacy at times and might like to go to chemo with her husband or friends.  During serious illness, the community shares the burden of caring for those in need.  It doesn't all have to come from you, and is actually better for her if loving care comes from many sources.   When I was going through treatment, I really appreciated the times my mother visited, but those weren't that many and I was completely fine with that.  I still felt very cared for by her, and actually preferred to go to chemo with my husband as a weird sort of 'date'.  Sometimes it is easier for the person in treatment if those around her don't have so many big feelings about what is happening.  Does that make sense?  My mom tends toward grief and guilt, and while I love her dearly, it was easier for me to spend time with people with less overwhelming feelings.  Then again, my relationship with my mother has been complicated for a long time.  I of course have no idea what it is like between you and your daughter.

Anyways, just some thoughts on this.  It would be great if you could let go of your guilt and just enjoy and support your daughter in the way that works for both of you.  It may not look like Tarzan swinging in to the rescue, but that's ok.  Probably better for everyone, you know?

Good luck with this, and I'm really sorry you are being faced with this.  In some ways it is probably harder for the mothers than the daughters, as the last thing we want in life is to see our children suffer.

love,
d


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: Grateful for today
Date Posted: Oct 06 2011 at 12:57pm
Hi Kim,

First, tons of caring and positive thoughts to you and your daughter.
Your daughter is fortunate to have you for her mom.

I do not have a daughter with TNBC.
Do know of a group that you may decide to call. The group is for mothers who have daughters
with all breast cancers and not just TNBC.

The group is for mothers with daughters with breast cancer.
They offer individual support from volunteer mothers.
They have 2 free booklets.....one for mothers....one for daughters. (Have not seen these booklets).
Does not appear that they have an online forum.
The group: MSDBC. Mothers supporting daughters with breast cancer.
Phone: 410-778-1982.
website: http://mothersdaughters.org
Lillie Shockeny RN who is well known from the Cancer Center at John Hopkins started this group
with her mother.
(I called the phone number to be sure this group was appropriate to suggest. The person said
that recently she had received calls from 2 mothers whose daughters were diagnosed with
TNBC.   Again, group is for all breast cancer types)

With caring and positive thoughts,

Grateful for today...............Judy



Posted By: thepeddlerswife
Date Posted: Oct 06 2011 at 2:21pm
Judy, thank you so much! I appreciate your help.

Kim


Posted By: linjin
Date Posted: Oct 06 2011 at 3:41pm

Hi Kim,

My 25 year old daughter was just diagnosed in July.  She first noticed a very small lump in her right breast in June of this year.  She was told it was a cyst, I had even taken her to my Dr. who tried to extract fluid from the mass.  Which she didn't.  She sent us home telling us to come back in a month and not to worry.  It was just a cyst and the mass should start shrinking.  I took her to another Doctor 2 weeks later and the mass had grown to 7x5cm.  By the time we got biopsies back and saw an oncologist it had grown to 9cm.  Incredible fast growing tumor.  Her diagnosis - Triple Negative Stage III of III.  She has finished her first round of Chemo with AC and will start next week with Taxol.
I have only found one site for moms and daughters.  Its called MSDBC - Mothers supporting Daughters with Breast Cancer.  They are wonderful.  I emailed them and Charmayne got right back to me and sent me some wonderful literature.  Their website is http://www.mothersdaughters.org - www.mothersdaughters.org
This cancer is very confusing - I read and search for any information I can find.  Sifting through what applies and what doesnt. 
As you say your daughter seems to be dealing with this better then you - is the same as myself.   I'm proud of my daughter and the strengths I see in her.  I can't imagine what its like going through this at their age.
I can't say its good to see another mom on her because I wish no mom or daughter would have to go through this.Heart
 


Posted By: btstark2003
Date Posted: Oct 06 2011 at 9:34pm
Dear Kim/thepeddler's wife,

I don't have a daughter with breast cancer, but I do have daughters and I do have a wonderful mother, so I think that I can understand some of what you are going through. One thing that I am thankful about is that it IS ME with the cancer and not my mother or sister, and that neither of my young daughters has a life-threatening illness.  So I KNOW that you would take this illness for your daughter if you could, but you simply cannot.  And I doubt that anyone thinks that you should have cancer instead of her, and you certainly didn't cause her cancer, so please just try to let go of the guilt!  It's not a productive emotion - it doesn't help your daughter and it doesn't help you.   When you feel the guilt, try to refocus instead on your love and empathy for your daughter and her children.  These are useful emotions!  

Focus on thinking about ways that you can help her and don't waste time or energy on guilt!  Even when you are not with her, you can send encouraging cards to her, or funny books for her to read or movies to watch when she is resting.  Or line up and pay for someone to clean her house, or ask if there are any projects that you could pay someone to do for her (paint a room, hang new curtains, rake the leaves).  Or pay someone to come to her house and give her a gentle aromatherapy massage (my mother-in-law did that for me, and it was heavenly!).

And now for a little tough love.  YOu must find a way to deal with your sadness and refocus on being as cheerful and positive and hopeful for your daughter as you can, because this is how you can help her.  THis is what she needs from you.  It is very hard for us daughters to see that we are making our mothers suffer.  It just makes it worse for us!  You will need to have your moments of sadness, but don't dwell there too long.  Focus on enjoying life with your daughter and her children and the rest of your family because that is what she wants for you.  

Much love,
Beth


-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda


Posted By: Lillie
Date Posted: Oct 07 2011 at 4:50pm
Hi Kim,
I'm the one who had breast cancer and I have a daughter. I can tell you that with either scenario (guilt) is not the answer.

I needed all the encouragement, reinforcement, helpful friends and family, but I didn't need guilt. My daughter lives 300 miles away from me and was only able to come when I had my initial surgery. She called almost every day and we shared our lives via phone. NO GUILT... Concern, but NO GUILT.
You have received some great advise from several people already. I am sorry you are having to go through this and I'm sorry about your daughter also. Praying for both of you and all your families and better days ahead.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: trip2
Date Posted: Oct 11 2011 at 7:16pm
Hi Kim and welcome.  I'm so very sorry to see your family is having to deal with this and hope you will find the support that you need. 
I was dx at the age of 56, went thru treatments in 2003 then it came back on the other side in 2007.
My daughter was dx with multi-focal tumors, one tnbc and one er+ in January of 2007.  I fell to the floor in sobs when I learned she was going to deal with this monster and wished and prayed that it would have come back to me instead.  Well it did one month later so we ended up going thru treatments at the same time.
 
At that dx I learned I was brca 1 positive.  We have a heavy family history.  My daughter also tested positive as did my youngest daughter.  I was devastated.  I had seen cancer take most of my family and it was continuing to rear it's ugly head.  I feel guilt because I have passed this nasty gene on to my children but I can't change it so we have to do what is best to stay on top of things.  I lost my mother to Ovarian ca when she was 46, I am sure this gene came from her and I certainly am not angry with her, it's no one's fault but we mom's naturally don't want these things happening to our children.
 
 
Has your daughter considered seeing a genetic counselor and possibly being tested for a brca 1/2 mutation?  You might check out the website http://www.facingourrisk.org - http://www.facingourrisk.org where you will learn alot about these mutations, that is their main focus and they have a great forum for asking questions.
 
You've been given some good advice.  It is crushing to see one of your children have to deal with this but with my daughter and many other young people I have noticed so many of them do quite well.  We as mother's feel or I did that I should be there for her, we live in different States, so that would have been difficult and then I started treatments so out of the question.  I did visit her when she had one of her early surgeries before she began treatment and we kept in touch with phone calls and email.
 
Personalities are so varied, I had become very interested in researching tnbc, busy on this board but my daughter handled her situation differently.  She had 2 young boys, a job, good hubby, friends for support, she really did quite well. I gave her books and magazines, would email her links or tell her of websites but she wasn't really interested, gave the books back to me unread.   She is continuing to do well.
 
Getting a dx of cancer is rough emotionally and physically for the patient.  We all handle it in our own way.  Some are more independent or busy but just knowing a loved one is there if they need them can mean alot.  Sometimes you have to sort of let the one with the cancer guide you in their own way as to what they need and possibly give them space too.  Everyone in the family sort of has to find their footing and it's handled in different ways.  It takes some time.
 
All my best to you both, it will work out.  So many times we worry about things ahead of us, I know I do and so I work on trying to focus on right now, one day at a time, one hour at a time, whatever it takes.


Posted By: kelly1843
Date Posted: Oct 23 2011 at 4:36pm
I'm 43 and a tough old bird, my mom on the other hand is so worried about me (sound familiar?)  If this is you feel free to email her, haphehen@yahoo.com, her first name is Helen, I know she'd ABSOLUTELY LOVE to have contact with others who are dealing with the same emotions as she has been...she's an awesome MAMMA BIRD, taking care of her baby (ME), but I think it frustrates her that I have the attitude that I can deal with this like it's just a pimple or something....please email her...I think it'll help you both deal with the current issues!


-------------
Diagnosed July 2011. Stage 1 tumor, lymph nodes clean. Lumpectomy, followed by four bi-weekly AC followed by 12 weekly Taxol, followed by 34 daily radiations.


Posted By: mom&grandma
Date Posted: Oct 23 2011 at 10:27pm
Hi Peddler's Wife,
 
My daughter was diagnosed 8/2009 and we went through (and I mean we) chemo for 4 months and then she had a mastectomy.  My daughter has two children, a 11-year old boy named Ty and a three year old daughter named Bella.  They lived with us while she was undergoing treatment and I was her main caregiver so I know just about every minute of her fight.  It was difficult emotionally for me, but not impossible.  Try not to worry about the worse that can happen because more than likely she will have good results.  I think watching her lose her hair was the most difficult.  She was such a trooper through chemo, but when she lost her hair, she just sobbed.  In fact, the tears are rolling down my cheeks as I think about that night.
 
The women on this site are so supportive.  I would not have been able to guide her through the treatment if I did not have them for support and advice.  I was also lucky that there were a couple of young women going through treatment just before her so we knew what was coming a month ahead so we could plan.
 
Please email me if you need talk.  I am a good listener even if I can't give you the perfect advice.
 
Bonnie


-------------
Bonnie, mom of Heather, age 32, Dx on 9/1/09 TN IDC Stage 1, 1.4 c, lumpectomy, 10/8/09, DD AC & T, 3/9/10 bilateral mastectomy and immediate reconstruction, BRCA 1/2-


Posted By: momof tnbc
Date Posted: Oct 25 2011 at 7:59am
Cry Angry In august 2011 my 34 year old daughter was dx with BRCA 1 tnbc.  It has been rollercoaster ride since then. I have learned so much and unfortunately , the more I learn , the scarier it all seems.  my daughter has chosen to not research, but take things as they come.  She also knows I am always searching.  She has had a bilat mastectomy and has expanders in , working on reconstruction. She wants no children, so that has not been an issue. Went to oncologist yesterday and now knows she's facing 16 weeks chemo. The dr. said after 5 yrs her survival rate is 95 %  She thought that was so encouraging which is what she needs....a positive attitude.  I almost cried thinking 5 years of absolute hell waiting for the next shoe to drop. i am not a negative person....I am her MOM.
Because of the BRCA1 the next question is removing ovaries.
Now lets compound the problem.  I have three daughters. Two are BRCA1 positive.  My mother-in-law died of ovarian cancer at 44yr old in 1965. The second daughter with BRCA is 33, not married but wants a child. These two daughters are very close and the second one watches the first and tells her constantly to tell her all she is going thru because she knows what she is facing. Even if there is no cancer she will have dm and ovaries out. Just a matter of when. I am living a nightmare!!
 
In 5 months the world has turned upside down
Sorry... I just need to vent and know I'm not alone. I live in a small town where you always put your happy face on.
 
So Kim ,there are mothers out here.  Lets help each other


Posted By: Barbi
Date Posted: Oct 25 2011 at 9:36am
Moms should not have to see their daughters go through this. That being said, Moms are undoubtedly the best support system a daughter could have. Wish mine was here with me, but knowing the turmoil it would cause her, glad she's not going through this.
 
Prayers to all you Moms and your daughters for peace and strength.


-------------
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.


Posted By: HappyGoLucky
Date Posted: Oct 25 2011 at 10:55am
Dear moms
How horrific, our daughters are ourselves. I feel everything when my daughter has ilness or stress . Pray that we get to the bottom of this mutation and reverse. I can't stand this  Please know that you are in my prayers for restored strength and reversal and sending you comfort and (((((hugs))))).
Love
karen


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: Lillie
Date Posted: Oct 25 2011 at 4:06pm
Dear momoftnbc,

I am the mother and I had the cancer. I have a 48 years old daughter and 2 granddaughters.

I was not into research when I went through my treatments. I just had to hold myself together mentally to make it through. Your daughter may be the same way. She is lucky that you are researching and one day will be able to digest a lot of the information for herself. I'm so sorry about the BRCA situation and having another daughter affected. It is true that when our children hurt, we hurt; no matter their age.

Please let me share that I am a 5 year survivor and getting to this point has not been easy. The best advice I know is "One Day At A Time". Bite off small pieces to chew; we can't swallow this in one chunk. Take care and keep posting. We are here for you and your daughters.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: momof tnbc
Date Posted: Oct 25 2011 at 4:42pm
Thanks for your posts, especially Lillie. I have to hear the 5 years out stories even if its tough. And you are right, she is holding it together and not looking for too much info at this point. 
 
I will keep posting and hope I will be able to encourage others in the future.  For now thank you for the prayers and support.


Posted By: LivingLarge
Date Posted: Oct 26 2011 at 12:21pm
I think I am going to introduce my mom to this site and especially this post.  My mom was absolutely devastated by my dx and really has a tough time seeing her daughter having to deal with tnbc.  She does not have anywhere to really go for support.  I have my own daughter and can really relate to how she must be feeling but think it would be good for her to have some support.  

BC impacts the whole family and think sometimes people focus more on the patient but I know from watching my mom she can't take much more without support.

Glad I found this site yesterday by accident and wish I would have know about it back in 2009 when I was first dx but at least I know about it now.


Posted By: trip2
Date Posted: Oct 26 2011 at 7:28pm
LivingLarge you are correct, our support system, those who love and care for us also need their person and/or place where they can go, for asking questions, relief from the stress, being with others who understand.  As you say the whole family is impacted by something like a cancer diagnosis.


Posted By: momof tnbc
Date Posted: Oct 26 2011 at 7:39pm
I agree.  Friends who haven't been affected by this can only listen just so much.  they don't realize the pain.  I was struck by LivingLarge and your perception that your mom can't take much more without support.  My daughters worry about me too.  They don't realize that i can't turn off being a mom.  These are my precious babies and its not supposed to work this way.  They always joked that when i was old they would take care of me. Well I'm not old but they are trying to take care of me while dealing with all they are going thru.
I always told them that life isn't always far, but now I am feeling that myself.
please have your mom reach out to us.  it would help both of us


Posted By: skline6381
Date Posted: Oct 26 2011 at 9:15pm
I have been the caregiver of  my daughter.  Whitney was dx last year at 25 yrs old, college grad and no husband.  She had to move in with us, we have 2 other kids.  She was stage 3b and is still getting trial chemo and getting her expanders filled weekly.  I have had to use FMLA and my work has been so understanding.  It is so hard to watch our children suffer.  


Posted By: skline6381
Date Posted: Oct 26 2011 at 9:24pm
Our stories are almost identical!  Where do you live?  We are in Ohio.  My daughter was 25 also stage IIIB 7.5 cm and the tumor did not respond to 8 AC and 3 taxol and 3 of 22 nodes were dirty.  Bilateral mastectomy and going through a non FDA approved clinical trial. Still filling her breasts.  I would love to talk, it has been a year this Oct 18th.  
Sandy



Posted By: momof tnbc
Date Posted: Oct 27 2011 at 9:37pm
I live in NJ.  My daughter is BRCA1  and of coarse triple neg. She was stage2b with no nodes involved. She had bilat mastectomy Oct. 4 of this year so we are just starting.  Has had two filling of the expanders. Chemo starts in two weeks. Luckily we live very close.  Are you saying she had the chemo first and didn't respond? 


Posted By: momof tnbc
Date Posted: Oct 27 2011 at 9:50pm
So how do you hold yourself together?  My daughter is 35 and my second daughter is 33.  She is also BRCA1 positive. Older has the cancer and younger talks to her alot about what she is going thru and they are actually helping each other with planning and decisions. The gene is from my husband so I can't even relate to what they are up against.  I just can't believe this all.  It has only been a few months so I have been researching like crazy. .. and going crazy


Posted By: momof tnbc
Date Posted: Nov 02 2011 at 6:08am
We went yesterday to see oncologist.  Got all the ins and outs of what we are facing.  I was upset because the ins co denied a PET scan. Have to do two CT instead. Since K is BRCA1 I am worried about ovaries too. DR said the pelvic Ct  is actually better for that. A blessing in disguise!  Sure the ins co didn't do it to help us out. All about their money though so far its been pretty good about approvals.
 
Chemo starts Nov. 8. We went to the infusion room and there was an older woman there with a wig, sleeping, pale, thin and visibly frail. It scared me to death and broke my heart!
 
K has gone into "head in the sand mode". She just wants her partner and me to make arrangements and and she wants none of the details. I don't blame her. Wish I didn't know. Today we go for MUGA to check heart and recon Dr for more filler in breasts. Gets port on Friday. I know lots of you have gone thru this already but for us its new and scary!
 
Looking for healthy  food for her. Also we are all going for flu shots. Just keep thinking around Valentines Day we willbe finished. Hope its amild winter here in NJ. I have 1/2 hour drive to chemo.
Thanks for lettingme get this in writing.


Posted By: Barbi
Date Posted: Nov 02 2011 at 2:16pm
Write all you want. Great idea to get your flu shots. Port is a life saver and the sedation makes insertion a breeze! It IS new and scary and we all hope we can help. Love and hope to you all.

-------------
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.


Posted By: trip2
Date Posted: Nov 02 2011 at 8:16pm
The first few weeks after a dx is the pits because we don't know what it will be like ahead for us.  It is scary.
After your daughter gets her first infusion you will sort of settle into a routine of sorts, you'll understand more of what is going on and what to expect.  Her chemo nurse will explain everything to her. Make up a "chemo bag", paper, pencil (ask questons, make notes) ipod, book, snacks/water, lap blanket, newspaper, etc..  Some bring their laptops.
 
Have her stay out of crowds, away from people who may have colds.  There is a list of chemo tips in the TNBC News & Resource section that you might find helpful.
http://www.chemocare.com/ - http://www.chemocare.com/
 
The above website has alot of info about the types of chemotherapy, side effects, etc..
 
http://www.imaginis.com/breast-health/breast-cancer-treatment - http://www.imaginis.com/breast-health/breast-cancer-treatment   This website I also found helpful.
 
Hope Friday goes well, all my best..
 


Posted By: momof tnbc
Date Posted: Nov 02 2011 at 9:36pm
Thanks you sooo much for all the hints and advice, Trip2!!
Today she had MUGA and Friday she has bone scan and chest and abdominal CT then the port.  Will be a long day.  The thing I find amazing is that all the regular every day things don't stop.  Bills still come, dinner has to be cooked, house clean laundry etc.  Doesn't life know I have something much more important to fill my time?
Knowing things will settle into a routine is comforting. hopefully things will go smoothly
 
Thanks againTrip2


Posted By: momof tnbc
Date Posted: Nov 02 2011 at 9:48pm
Thanks for the encouragement Barbi. The writing helps me focus and its nice to know you are out there


Posted By: Grateful for today
Date Posted: Nov 02 2011 at 10:57pm

the peddlers wife: Hope things are OK.   Lots of caring and positive thoughts to you and your daughter.
                                                                                                                Judy

__________________________________________________________________________

mom of tnbc:

As others have said, once the chemo is started, it helps.   Waiting is very hard.   
Previously, I had posted some thoughts on chemo on another forum.
Posting for you in case any of this info may be helpful for your daughter and you.
It is written as if for the person receiving chemo.........sure you can adapt info for your daughter.

Remember: all side effects are possibilities and not probabilities.
As noted above: see the post "Chemo Tips"?
Click on forums>>click on "TNBC News, Resources & Tips.>> find topic "Chemo Tips"
Many good ideas here. As usual, check with you MD re: any supplements suggested.
Would also recommend checking with your MD on 2 of the things mentioned in chemo tips
(as believe there is a difference of MD opinions on some of the things mentioned)
   Check with your MD especially on: Colonics. Use of ice on nails.
For dry mouth: artificial saliva.   Biotene Oral Balance.
Really important to take anti-nausea meds as directed. Take PRN anti-nausea meds at first sign of
    any queasy feeling (at least until you learn how you respond to chemo).
If you plan on getting a wig, get before you start to loose hair.
Prior to taxol: check with your MD about starting Vit B 6 100mg daily one week prior to taxol start,
     if possible.....or start with taxol if MD agrees.     (if taxol part of treatment plan)
    Was told to continue for 6-12 months after last taxol dose. Some feel Vit B 6 decreases or prevents
    possible taxol side effect of peripheral neuropathy.
Make plans to have help "available" for most of 1st week after chemo.......then you will start to know what
     help you may need.   You may not need any help. You may need help on chemo day and for 2 days
     after. You may need help only on day 4 etc.   As usual every, one is different.   By having help
     available to call if needed the 1st week, it may help make the week easier.
     It would be great if you could arrange help on a couple of days regardless of how you feel....
     just to be sure you can get some extra rest during chemo.
Hopefully, a caring and calming person can accompany and stay with you while you get chemo.
Might consider some "Good Luck" object to bring with you to chemo. Or some people have a chemo
      hat/cap or T-shirt.
Think of some positive affirmations or sayings for actual chemo infusion.
       Reportedly, it is better to say/think positive statement....no negatives or negative connotation words.
       Ex: better: I am healthy. All my cells are healthy. I will have a long healthy life.
                           My treatment plan is healing me.
              not:      I have "no cancer".     etc.
              Am sure many people have said: I have no cancer and have been healed. Again, reportedly,
                  it's better to say positive statements.
       Some people are not into positive affirmations......and that's OK.
       Disregard this info on positive affirmations if it does not seem right to you.
Give some thought of how you want to spend the chemo time:......rest/sleep...... maybe
      a magazine or book.....maybe some handiwork if you knit or sew.....or write letters........if you bring
      music to listen to you may want to not bring your favorite songs (just in case chemo memories
      attach to favorite songs)........or other.    Can try different things during chemo time.
Take time to use the bathroom (have an empty bladder without chemo in it ) when you leave to go home
Hopefully, since your anti-nausea meds will be working, you will not need foods/drinks that you know
       help when you have a queasy stomach.   You might want to have such items in the house......and
       then you can use when next family member has a queasy stomach (not you!).
Some of the things mentioned here are also on the chemo tips post.
It has been suggested that when good friends/relatives asks: What can I do to help?......Have some
specific things that would be helpful for you.   Bring a meal over the night of chemo days.
Think one of the best ideas I have heard: delegate one of your best friends/relatives to be "your volunteer coordinator". Then, every time some one says: How can I help? You can say: I'll give your name and phone/e-mail to my volunteer coordinator. That way you let that one person know what you need and that one person sets up the help ( or some system like this that would work for you and your family).

There are some great suggestions already posted on this forum by others.
In addition, remember fluids after chemo is VERY important to flush the chemo out of the body.
If the vitamin D level has not been checked, you may want to ask about this. Some newly diagnosed
have low vitamin D levels. If level should be low, check with MD about Vitamin D3 supplements.
Also forum info on vitamin D. Go to top of page> click on search> put in Vitamin D.

Once you have your first chemo, you can figure out what works best for you for the most healing
experience.

These are just some thoughts. Pick and choose what feels right for you. You know your needs best.

With positive and caring thoughts to you and your daughter,

Grateful for today...............Judy    
ps: do not have a daughter with TNBC but wanted to share the chemo info I had put on other sites.


Posted By: momof tnbc
Date Posted: Nov 03 2011 at 6:43am
Thank you Judy. I am sure these suggestions will help alot. One of the sugestions I know I will use.... I live with my 87 year old mother.  She is very sharp but alittle frail. She has lots of friends who call to offer help.  I will make her our volunteer coordinator. She worries she has no way to help and worries we aren't eating well etc. This is the perfect thing for her to do! My daughter lives across the street from us so it helps her and partner and us. 
My daughter is spiritual and believes in companion therapies.  The positive affirmations , she loves fairies, she wants to start yoga asap. Reiki has helped in the past and of course we are both walking as often as possible.  She also has a wonderful sense of humor and we are trying to laugh our way thru this. 
 
You are all right...I think once we get into the routine we will feel better.  Its still a scary unknown but it starts Tues when the journey begins!


Posted By: Grateful for today
Date Posted: Nov 03 2011 at 10:09pm
mom of tnbc,

Your daughter is so fortunate to have you for her mother!
Great to hear you both are walking as often as possible.
Like so many things mentioned, everyone is different in their response to chemo.
It's great for those who were able to continue the same exercise they did before.
For others, ANY exercise is better than none.
So, if some days your daughter can do a quarter of a block walk, have her listen to her body.
For those who believe in companion therapies ( in addition to medical care ), agree these
therapies can only help.   Am a firm believer in the companion therapies.

It sounded so counter-intuitive to me when I was told.....you will feel better once you have had
your first chemo.........but it was so true.

With continued caring and positive thoughts to you and your daughter,

Grateful for today...............Judy


Posted By: kirby
Date Posted: Nov 03 2011 at 11:43pm
Mom, your daughter may want to try accupuncture. I was skeptical and didnt try it until after my first chemo. It made a world of difference in energy level. I would have chemo then go directly to the accupuncturist office.  Good luck to you both. How nice to have generations so close by.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Grateful for today
Date Posted: Nov 04 2011 at 12:13am
mom of tnbc,

So often we say......we are all different and respond differently.

Am always thrilled when I hear acupuncture made a difference for the better for people.
In addition to Kirby's post above, I know people who had very positive experiences with acupuncture
during active treatment.
Unfortunately, I heard from a physical therapist of at least one patient who had the OK of her
medical providers for acupuncture and then developed lymph edema afterwards. Would she have
developed lymph edema without the acupuncture in her surgical side arm......difficult to know.

Am posting this so you and your daughter can ask her providers for the pro's and con's of
acupuncture (if in her arms) in HER situation to help your consideration.
If acupuncture not in arms/chest area, disregard my post.

Please know I respect the opinion of all who think acupuncture can only help.
Please know I respect the opinion of all who have a concern for acupuncture in the setting of
breast surgery/ axillary node dissection/Sentinal node biopsy/radiation if done in surgical side arm/
chest.

With caring thoughts,

Grateful for today..............Judy


Posted By: Grateful for today
Date Posted: Nov 04 2011 at 9:07am
mom of tnbc,

Apologize if overloading you with too much info.

Thought I would search for more info on acupuncture and potential for lymph edema.
Again, that wonderful issue of weighing benefits and risks.

From the Johns Hopkins Breast Cancer Center: Ask the Expert:   (note: answer given in 2006)
Ask an Expert is a free question-and-answer service about breast cancer and breast health.
        8/21/2006     Is it OK to have acupuncture needles placed in my axillary node dissection arm?
I am thinking of getting acupuncture for my back pain. I have never had any problems with
lymph edema, but don't want to start now. Thank you
        Replied:     JHU's Breast Center Reply
        8/21/2006     some have used it as part of their lymphedema treatment actually. get your doctors'
        okay though.
Ask The Expert at Johns Hopkins Breast Cancer Center:
Please note: This service is not intended to provide primary medical advice concerning specific medical care or treatment. Ask an Expert is a free service operated by health care professionals at the Johns Hopkins Avon Foundation Breast Center.

From NIH National Institute of Health. National Center for Complimentary and Alternative Medicine.
nccam.nih.gov/health/acupuncture/introduction.htm
Acupuncture Side Effects and Risks
The U.S. Food and Drug Administration (FDA) regulates acupuncture needles for use by licensed practitioners, requiring that needles be manufactured and labeled according to certain standards. For example, the FDA requires that needles be sterile, nontoxic, and labeled for single use by qualified practitioners only.
Relatively few complications from the use of acupuncture have been reported to the FDA, in light of the millions of people treated each year and the number of acupuncture needles used. Still, complications have resulted from inadequate sterilization of needles and from improper delivery of treatments. Practitioners should use a new set of disposable needles taken from a sealed package for each patient and should swab treatment sites with alcohol or another disinfectant before inserting needles. When not delivered properly, acupuncture can cause serious adverse effects, including infections and punctured organs.

Simple, concise: check with daughter's physician about acupuncture (know this was your plan anyways)

Again, apologize if too much information.

Grateful for today...............Judy   


Posted By: janet c.
Date Posted: Nov 04 2011 at 1:28pm
Judy,
Wow you are amazing how you are researching and helping so many people. I am so impressed I just had to let you know.
Janet

-------------
dx 12/08 @47yrs.old TNBC stage 2a grade 3, 2.1cm. partial mastectomy sentinal node negative BRACA negative Cytocan/Taxatere x4 radiation 36 or 38rounds


Posted By: 123Donna
Date Posted: Nov 04 2011 at 3:37pm
Here's some information on Acupuncture and Lymphedema from MSKCC:
http://www.mskcc.org/mskcc/html/11917.cfm#36455 - http://www.mskcc.org/mskcc/html/11917.cfm#36455

6. Acupuncture

How does acupuncture work?
In Traditional Chinese Medicine, acupuncture is thought to treat diseases by promoting flow of energy (Qi) in meridians that are believed to connect various organs in the body.  Modern research indicates that acupuncture can modulate the secretion of neurochemicals, such as beta-endorphin and serotonin, to help relieve pain. Studies also suggest that patient-practitioner interaction plays a role in acupuncture's therapeutic effects. Research is underway to determine the mechanisms underlying acupuncture's effects.  

Can acupuncture be used to treat cancer?
There is no scientific evidence to show that acupuncture can be used to treat cancer or to shrink tumors. But several studies indicate acupuncture's usefulness in alleviating symptoms associated with cancer and its treatments.

What is acupuncture good for?
Acupuncture can be used to control several symptoms associated with cancer treatment, such as pain, anxiety, nausea, dry mouth, and hot flashes. There is preliminary evidence indicating the benefits of acupuncture for neuropathy. 

Is it safe to receive acupuncture during cancer treatment?
Acupuncture can be performed safely during cancer treatment. However, patients who are on anticoagulants or are susceptible to infections should use acupuncture with caution. It is important to consult with an oncology-trained acupuncturist for evaluation before beginning treatment

Can I receive acupuncture if I have lymphedema?
Due to risk of infections, patients are often advised to avoid needles on limbs that are prone to lymphedema. This extends to the use of acupuncture needles. However, most acupuncturists use disposable needles and clean needle technique which greatly reduce the risk of infection. Furthermore, emerging data from recent studies indicate that acupuncture treatment is safe and helps reduce symptoms of  lymphedema. We are currently conducting a study to confirm the safety and efficacy of acupuncture for lymphedema. Patients with lymphedema should first consult with a physician and seek treatment from trained acupuncturists.

Do I need a doctor's referral for an acupuncture treatment?
In New York and in many other states, acupuncturists are considered as independent healthcare providers. You don't need a doctor's referral to get an acupuncture treatment. However, it is important to consult with your physician for a proper diagnosis and evaluation.  Your doctor and acupuncturist can work together to provide you the best care. 




-------------
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



Posted By: kirby
Date 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


Posted By: Grateful for today
Date 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


Posted By: skline6381
Date 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


Posted By: momof tnbc
Date 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


Posted By: momof tnbc
Date 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!


Posted By: 123Donna
Date 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



Posted By: momof tnbc
Date 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.


Posted By: momof tnbc
Date 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


Posted By: momof tnbc
Date 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.


Posted By: debB
Date 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


Posted By: 123Donna
Date 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



Posted By: Barbi
Date 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.


Posted By: momof tnbc
Date 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.


Posted By: momof tnbc
Date 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


Posted By: 123Donna
Date 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 - 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 - 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



Posted By: momof tnbc
Date Posted: Nov 09 2011 at 1:58pm
Thanks so much. Got a clearer picture now.  I will pray for continued NED's for you!
 
 


Posted By: Grateful for today
Date 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


Posted By: Wade
Date 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


Posted By: Grateful for today
Date 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" rel="nofollow - 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" rel="nofollow - 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" rel="nofollow - 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" rel="nofollow - 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/" rel="nofollow - 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/" rel="nofollow - http://www.mothersdaughters.org/



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



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