New Posts New Posts RSS Feed - Any mom's of TNBC daughters?
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Any mom's of TNBC daughters?

 Post Reply Post Reply Page  <123>
Author
LivingLarge View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 26 2011
Location: Texas
Status: Offline
Points: 4
Post Options Post Options   Thanks (0) Thanks(0)   Quote LivingLarge Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
trip2 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
momof tnbc View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2011
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
skline6381 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 10 2010
Location: Wooster
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote skline6381 Quote  Post ReplyReply Direct Link To This Post 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.  
Back to Top
skline6381 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 10 2010
Location: Wooster
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote skline6381 Quote  Post ReplyReply Direct Link To This Post 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

Back to Top
momof tnbc View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2011
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post 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? 
Back to Top
momof tnbc View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2011
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
momof tnbc View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2011
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
Barbi View Drop Down
Senior Member
Senior Member


Joined: Jan 04 2011
Status: Offline
Points: 471
Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
trip2 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post 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.
 
The above website has alot of info about the types of chemotherapy, side effects, etc..
 
 
Hope Friday goes well, all my best..
 


Edited by trip2 - Nov 02 2011 at 8:19pm
Back to Top
momof tnbc View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2011
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
momof tnbc View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2011
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
Grateful for today View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 21 2011
Location: U.S.A.
Status: Offline
Points: 1835
Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post 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.
Back to Top
momof tnbc View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2011
Status: Offline
Points: 18
Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post 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!
Back to Top
Grateful for today View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 21 2011
Location: U.S.A.
Status: Offline
Points: 1835
Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
kirby View Drop Down
Senior Member
Senior Member


Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1042
Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
Grateful for today View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 21 2011
Location: U.S.A.
Status: Offline
Points: 1835
Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
Grateful for today View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 21 2011
Location: U.S.A.
Status: Offline
Points: 1835
Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post 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   
Back to Top
janet c. View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 12 2011
Location: n.y.
Status: Offline
Points: 354
Post Options Post Options   Thanks (0) Thanks(0)   Quote janet c. Quote  Post ReplyReply Direct Link To This Post 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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13335
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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. 




Edited by 123Donna - Nov 04 2011 at 3:47pm
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

Back to Top
 Post Reply Post Reply Page  <123>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

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