Go To Main TNBC Website


  New Posts New Posts RSS Feed - Newly Diagnosed Support
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Newly Diagnosed Support

 Post Reply Post Reply Page  <1234 14>
Author
 Rating: Topic Rating: 1 Votes, Average 5.00  Topic Search Topic Search  Topic Options Topic Options
unklezwifeonty View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 08 2009
Location: New Jersey
Status: Offline
Points: 203
Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2009 at 4:01am
Hi Julia,
Thank you for the encouraging words.
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
Back to Top
Juliadsmith View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 18 2009
Location: Katy,Tx
Status: Offline
Points: 19
Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliadsmith Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2009 at 6:39am
Debbie,
 
I just remembered what else I did to help my indigestion.  I ate smaller more frequent meals ( I think I ate something about every hour for the nauseau, which helped too) and never sat down or layed down within 30 minutes of eating.  I took small little slow walks and it helped a lot.  I stayed away from acidic foods and breads.  Your stomach takes a beating with chemo but it does get better and eventually goes away completely.  It took a few months after I ended chemo for it to completely go away, but it did! (I gained about 30 pounds but I really didnt care.  I knew I could deal with the weight after I got through treatment).  Nerves and stress during this difficult time are hard to manage.  Are you taking anything to help with that?  I did not need to go on any anti-depressants but needed Ativan for anxiety.  (which really affects your stomach).  It helped me to calm myself.  I also took 12mg of Ambien in order to get some sleep. 
 
Hope this helps a little.
 
Julia
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 19 2009 at 7:29am
Julia, it is so nice to have you aboard and congrats on doing so well.
 
We all will appreciate your support, experience, tips, thank you so much.Smile
Stage 2 2003
Stage 1 2007
BRCA 1+
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 19 2009 at 7:34am
Hello Tina and welcome to our forum.Smile
 
Many of us have found coming here and helping others provides a support not only for the other member but for ourselves.  You are very kind to be willing to help a frightened newly diagnosed member.
 
We'd love to hear an update when you learn more about what your treatments will be and a second opinion is an excellent idea!
 
It is scary to be diagnosed with TNBC so being with others who understand what it is like to have TNBC can be an immense help.
Stage 2 2003
Stage 1 2007
BRCA 1+
Back to Top
AmyC123 View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 27 2009
Location: Plainwell, MI
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote AmyC123 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2009 at 9:20am
Hello all,  I am a 38 year old mother of 2 diagnosed on October 5, 2009 with IDC stage III.  Had partial Mast. on Oct. 15th and node removal (11/19) When my oncologist first told me I was triple neg. I thought it was a good thing.  I'm just finding out on my own that it's not.  I have a bone scan and CT scan on Nov. 5th, trying to stay positive, but it is getting so hard.  Everyone always says "you're going to be fine and "people don't really die from breast cancer anymore". 
I don't know if I should go back to work.  I think it may help to be around people.  I can't stand being alone. My husband is very supportive, but he has to work.
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2009 at 9:59am
Hi, Amy.  Welcome to the site, though of course so sorry you have reason to be here.  The beginning is really rough, emotionally, for all of us.  I remember going through exactly what you describe, first feeling relieved to be triple negative (fewer things making the cancer grow, right?), and then little by little grasping that this was far from good news.  I was out of it that I was initially happy about the ER- because I could avoid Tamoxifen and early menopause.  Little did I know that chemo would put me in menopause anyways, and that having no targeted therapy is not what one wants.  As for going back to work, for now until you start chemo, you might as well if it helps you keep your mind off your fears.  You'll have to reassess when chemo starts - some women work through it, but many of us choose to take the time off to take care of ourselves and our families.  Personally, I found that I couldn't really work, be 'mom', do cancer treatment, AND do stuff like daily yoga, meditation, acupuncture.  So cancer treatment and healing arts became my 'job' for about 8 months.  

Good luck whatever you decide, and getting through this first stage of dealing with the diagnosis and deciding on treatment.  (by the way, how old are your kids?  Mine were 7 and 10 when I was diagnosed.)

Love,
Denise
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.
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 27 2009 at 10:31am
Hi Amy and welcome,
 
Just being diagnosed is very scary and  you're not sure of what is going to happen.
 
We usually have the scans you mention to make sure it hasn't spread and you will go from there.
 
Do the best you can to not worry about next month or next year.  Try going day by day, hour by hour if you must.
 
I was put on xanax after being diagnosed my first time and it helped alot.
 
Let us know how your scan results come out and ask any questions you might have, we'll try to help.
 
Start going thru the TNBC News/Resource section, there are some good tips and articles, studies.  Knowledge will empower you and help to give you good questions to ask your medical team.
Best wishes
Stage 2 2003
Stage 1 2007
BRCA 1+
Back to Top
Juliadsmith View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 18 2009
Location: Katy,Tx
Status: Offline
Points: 19
Post Options Post Options   Thanks (0) Thanks(0)   Quote Juliadsmith Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2009 at 3:07pm
Hi Amy, 
 
Welcome to this wonderful site where you'll find valuable information and lots of love and encouragement.  Waiting is so very tough.  Once I got all my info back and had a game plan, I did start to relax and feel a bit in control.  I did work a very demanding job up until my 4th treatment.
I probably shouldnt have worked past my 3rd but I'm a stubborn woman.  I felt like I needed to be productive and maintain my staff and clients.  It drove me bonkers to stay at home but my family started flying in from all over the country to be with me and that was my saving grace.  (I have 6 siblings)  I'm also a mother of 3 beautiful children.  2 girls, 17 and 13 and one boy 14. 
I went back to work a little too soon though.  I ended my treatment and went back to work within 3 weeks.  (Did radiation in the mornings then headed to the office). 
I did find that the more knowledge I had, the better I felt.  Even when the news was not as good as I would hope for.  I really stayed away from listening to statistics.  I did 6 rounds of aggressive chemo, 48 rads with 8 boosts.  I figured I did everything I could. 
 
Once you get the game plan, you will feel better.  Everyone is different so do what's best for you.
Right now, that is what is the most important!
 
Dont forget to ask for help.  From this site, your Dr and nurses.  Be your own advocate!
 
Julia
 
Back to Top
maryjahn View Drop Down
Groupie
Groupie
Avatar

Joined: Oct 09 2009
Location: Los Angeles
Status: Offline
Points: 85
Post Options Post Options   Thanks (0) Thanks(0)   Quote maryjahn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2009 at 11:26pm
Hi Amy,
 
I was diagnosed mid September and just had my MRI, bone scan and CT scan.  I should know in a couple of days what my treatment course will be.  I chose to not work because I seem to be working full time doing other things to keep me healthy.  I am at the dr's at least 3 x per week including nutritional support by my integrative dr.  I am doing to need a mastectomy on at least 1 breast.  I wouldn't rush into anything--use this support site to explore all of your options, as you have many.
 
Many warm wishes your way--stay positive and you will survive this.
 
Mary
Back to Top
AmyC123 View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 27 2009
Location: Plainwell, MI
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote AmyC123 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2009 at 8:31am
Thank you ladies for all of your kind words and encouragement. :)  Yesterday was  a bad day.  I know i will have them.  I feel a little more positive today.  I figure it won't do any good to worry about dying, it won't make me live any longer.  I have to go back to work for my insurance.  I wish I didn't.  My kids are 13 yr old daughter and 19 year old son. :)
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3586
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2009 at 4:59pm
Hi AmyC123,

Sorry about your diagnosis. I pray that your scans are clear and you can set a course for treatment.

You said you have to work to keep your insurance. Do you have any short term disability benefits? If so, have you looked into how much and how it works? The reason I ask is because I did have short term disability and long term disability through my employer. I did not work during my treatments but was required to go back to work after my Dr. said I was able. This was to be able to keep my insurance active after being on disability. My job was very stressful and my oncologist recommended that I take that break during my treatments.

I hope you can work things out, even if it working part time or something that you can handle and not jeopardize your health.

Much love and best wishes,

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 - 11/2015-9 yrs NED
Back to Top
kmartin View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 02 2008
Location: Central Maryland
Status: Offline
Points: 114
Post Options Post Options   Thanks (0) Thanks(0)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2009 at 7:16pm
Hi Amy,
 
I had to reach out to my friends and family members during my treatment...my best friend came over every day. I needed that in order to get through the bad and to enjoy the good.
 
My advice is to try to reach out for support and accept it as it flows toward you...a very difficult step for me. I was always the giver. Receiving was hard at first, but I learned to graciously accept the meals and offers of help.
 
Good Luck with your journey, we are here for you,
 
Kathy
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
Back to Top
lrderedita View Drop Down
Groupie
Groupie
Avatar

Joined: Nov 15 2008
Location: Tulsa, OK
Status: Offline
Points: 69
Post Options Post Options   Thanks (0) Thanks(0)   Quote lrderedita Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2009 at 10:02am
Hi Debbie,
I always get confused about taxotere, taxol and what I am now taking Abraxane (taxol's cousin). But I had taxol in 2006 (after AC) and had lots of aches,leg weakness, nausea and neuropathy, which all went away after completing it.
Now taking the Abraxane and Avastin, I haven't had any of that. I'm completing my second cyle today, of three weeks on and one off. I am weary, tired and rest a lot for a couple of days but no nausea and no aches. I receive Kytril with the drugs. My hair is steadily thinning, but not where I feel it necessary to go bald yet. I have short hair, anyway. And the best news is that the swollen lymphnodes (supraclavicular area) are greatly diminished. I used to feel the "small grape" cluster and now nothing. Praise God. We'll do scans after the third cycle.
I have had to discipline myself to stay away from spicy, tomato dishes only because I seem to be sensitive to canker sores. Otherwise, just being sure to eat healthy regularly. Don't let yourself get hungry.
All the best to you and your husband. It's bearable      Lynne
Age 46-5/06 lump ACT, Rads; 5/08 Rec bi-mast,Etopiside/ Cisplatin; 11/08 Rec Rads/ Gemzar(rad dose); 7/09 supraclav nodes Avastin/ Abraxane Sept09-current
Joyful in Christ through all circumstances!
Back to Top
LaurieB View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 29 2009
Location: Illinois
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieB Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2009 at 12:34pm
Hi Debbi,
 
I was diagnosed 10/5/09.  I am also going to be doing the B-40 trial, if my HMO doesn't stand in the way.  I don't know when I start the treatment yet, I go back to see the onc for appt #2 next Wed.  Do you know what group you are in?  Hope your first tx went as well as possible. 
 
Laurie
I am healing!
Back to Top
pjptexas View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 29 2009
Location: Dallas, TX
Status: Offline
Points: 2
Post Options Post Options   Thanks (0) Thanks(0)   Quote pjptexas Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2009 at 5:17pm
Hi Tina,
 
I was dx with TNBC stage 1 in April, last treatment was July 09.  Yearly mam-o caught tumor.was really small .9 cm was able to do interal radiation, and only 4 chemo.  But still have the same fear that it might come back.  
 
Most important thing to do is start a log, it's the only way you can keep up with everything that is happening, plus get a copy of all test from your doctor for your records. 
 
What would we do without the support of our husbands, family, and friends.  I thank my  husband daily for all his support.Smile
Back to Top
tasoulla View Drop Down
Senior Member
Senior Member
Avatar

Joined: Oct 16 2009
Location: cyprus
Status: Offline
Points: 261
Post Options Post Options   Thanks (0) Thanks(0)   Quote tasoulla Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2009 at 4:08pm
Hello,
 
my mum also was newly diagnosed with breast cancer and 7 lymph nodes involved.
how many lymph nodes you have involved?did you had your first chemo and how are you feeling?
what do you include in your diet?
 
hope everything goes well!!
 
tasoulla
Back to Top
DonnaL View Drop Down
Groupie
Groupie
Avatar

Joined: Nov 04 2009
Location: Florida
Status: Offline
Points: 53
Post Options Post Options   Thanks (0) Thanks(0)   Quote DonnaL Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2009 at 9:16pm
I posted my first message of being newly diagnosed with TNBC on the welcome board and then saw this thread - so, I'll post here.

I was diagnosed with TNBC today, so I've started to do research and found this site.   I do have a couple of lymph nodes involved, but my surgeon sent me for a MRI, PET scan and CT scan last week, which all showed no spread other than the tumor in breast and lymph nodes under the armpit - so that was good news and then I met with my oncologist today and that's when I found out I had TNBC.  He said I would be eligible to participate in the following clinical trial:  Randomized phase II 2x2 factorial trial of the addition of carboplatin and/or bevacizumab to neoadjuvant weekly paclitaxel followed by dose-dense AC in hormone receptor-poor/HER2-negative resectable breast cancer

But, after reading the potential side effects of the different groups (worst case scenarios) I'm not sure what I should do.  

Looking forward to learning more from all of you

Donna
Back to Top
LaurieB View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 29 2009
Location: Illinois
Status: Offline
Points: 17
Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2009 at 9:50pm
HI Donna-
 
I also was diagonsed w/ TNBC on 10/5/09.  All of my scans were also clear.  One lymph node looks slightly enlarged on the CT scan.  I am going to take part in a clinical study it is called B-40. I don't think that it is the same as yours, but it also has about 5-6 pages of scary side effects, which my onc told me about when he offered me the study.  He told me it was similar to reading the side of a box on any drug.  I talked to the research nurse and she let me know that most of them are ones that would come with the regular chemo anyway.  They moniter you very closely and have alot of drugs to help with some of the side effects.  I know 2 people who have had a different type of cancer (stage 4 lymphoma), that swear that they are alive today because of the clinical studies that they participated in.  If you trust your doctors, then I would go for it.  My trial is a PHase 3, but sounds like it has some of the same drugs as yours (bevacizumab).  Mine is not a study for TNBC, but for neoadjuvant chemo with some extra drugs (I don't have in front of me right now)  From the research I have done, I feel lucky to have this offered to me, but it is a personal decision.  I gather that sometimes you have to follow your gut feelings.  Did you have the genetic testing done?  I did because of my age (35) even though I have no family history.  I found out yesterday that I do not have the mutation.  I am interested to know what your surgeon has recommend for you.  I have been told that I can have a lumpectomy, but w/ the TNBC I have thought about a bliateral mastectomy.  Since I am doing the chemo first, I have time to decide.  My onc told me that this type of BC is "front loaded" meaning that if there is no recurrence in 5 years, that the chance of one goes way down.  That made me feel better.  Also TNBC actually responds better to chemo than other types of BC.  Anyway, I don't know if I helped with your concerns, have you gotten a second opinion?  Maybe that would help you sort through some things.  My onc is the head of the medical onocology ward at Edwards Hospital in Naperville, IL.  It is a nationally ranked cancer center.  My surgeon is the chairman of the Lynn Sage Comprehensive Cancer Research Foundation, and she also agreed with my participation in the study.  I really trust their opinions.  Keep me posted.
I am healing!
Back to Top
tasoulla View Drop Down
Senior Member
Senior Member
Avatar

Joined: Oct 16 2009
Location: cyprus
Status: Offline
Points: 261
Post Options Post Options   Thanks (0) Thanks(0)   Quote tasoulla Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2009 at 8:36am
Dear Donna,
 
What exactly is the treatment your going to follow? How many times for each cycle and what drugs?
My mother is under the dense dose treatment and i think is the same situation as with you.
How many lymph nodes are affected and what grade is the tumor?
 
 
Regards,
 
Tasoulla
Back to Top
DonnaL View Drop Down
Groupie
Groupie
Avatar

Joined: Nov 04 2009
Location: Florida
Status: Offline
Points: 53
Post Options Post Options   Thanks (0) Thanks(0)   Quote DonnaL Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2009 at 8:57am
Thanks, Laurie for your response!
 
Hi Tasoulla,
 
If I do the clinical trial there is one of four groups that I could be put in:
 
  • Arm I: Patients receive paclitaxel IV over 60 minutes once weekly in weeks 1-12. Patients then receive dose-dense doxorubicin hydrochloride IV over 5-10 minutes and cyclophosphamide IV over 5-30 minutes (ddAC) once in weeks 13, 15, 17, and 19.

  • Arm II: Patients receive paclitaxel and ddAC as in arm I. Patients also receive bevacizumab IV over 30-90 minutes once in weeks 1, 3, 5, 7, 9, 11, 13, 15, and 17.

  • Arm III: Patients receive paclitaxel and ddAC as in arm I. Patients also receive carboplatin IV over 30 minutes once in weeks 1, 4, 7, and 10.

  • Arm IV: Patients receive paclitaxel and ddAC as in arm I, bevacizumab as in arm II, and carboplatin as in arm III.

Patients in all arms undergo definitive surgery (i.e., modified radical mastectomy or breast-conserving surgery with appropriate management of the axilla) between 4-8 weeks after completion of neoadjuvant therapy.

My tumor grade is 3 and 2 lymph nodes affected.
 
Back to Top
 Post Reply Post Reply Page  <1234 14>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.