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MrsW2002 View Drop Down
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    Posted: May 13 2012 at 8:01pm
Hi.  I just found this forum a few days ago, and have been poring over it ever since, and decided it was time to introduce myself.  

I'm 39 and the mother of a 7-year-old boy.  I first felt a lump in my left breast, between 6 and 7 o'clock, back on 2/20/12.  After being told "It's likely a fibroaedenoma, but let's just check to make sure", I was sent for over a month's worth of ultrasounds & mammograms before they finally decided to do a biopsy.  I was even told during my biopsy that it looked like a fibroid tumor and I might want to have it removed "just for a piece of mind".  Four days later I found out I had breast cancer.

Between my initial biopsy on 4/6/12, and my PET scan on 4/24/12, my one, singular tumor that originally measured at slightly over 2cm had now reached 4 cm, had two new tumor friends right next door, and suddenly not only was my sentinel node showing white hot, but my first two rows of nodes in my left armpit were also lit up.  In less than 3 weeks. They say it's aggressive.  They're not kidding.

I began neoadjuvant chemotherapy on May 3rd, with 4 rounds of A/C followed by 12 rounds of Taxol.  Then we'll do a mascectomy, I'll have my ovaries removed, then start radiation.  I go in for my genetic counseling in two weeks to see if I carry the gene.  For what it's worth, I really have no history of breast cancer in my family, with the exception of a couple of great-aunts.

I tend to be very analytical by nature.  I devour statistics.  "Just the facts, ma'am." But last night these statistics hit me like a ton of bricks, and I can honestly say that I am now very scared.  It's not helping that at my follow up a few days ago I was told my white blood cell count was dangerously low, and today I'm hovering at 100.2 fever.  I got the Nuelesta shot the day after my first chemo; it needs to hurry up and work it's magic.  It's a little my fault, too...I'm having a really hard time slowing down.  

I am so happy that I found this site.  I originally joined another larger site, and just had a hard time finding my niche.  



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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2012 at 9:10pm
Hello MrsW2002,

Glad you found us and you'll find so much helpful information on this site.  TNBC can be very aggressive, but it also responds to chemo.  Chemo can be tough so try to take it easy.  Be gentle with yourself and let others help you.  Your body needs to stay strong to fight this beast.  

You might also ask your onc to see if you can get your Vitamin D level checked.  It's a simple blood test.   Most of us diagnosed have found we have very low levels of Vitamin D.  Vitamin D is one supplement that will actually help chemo work better.


Donna

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2012 at 10:28pm
Hello MrsW2002,
So sorry you had a need to find us, but you have found the best Support Group there is for us triple negative girls.
 
So sorry you got the run around before you were diagnosed.  It sounds as though you are headed in the right direction with your treatment.  And, as Donna said, this disease is aggressive, but in most cases it responds well to chemo.  Please try to be kind to yourself.  You are getting some pretty potent drugs and your body is telling you to Sick slow down.  Take care and you are in my prayers.
 
Keep posting and sharing or venting or ask questions.  What ever you need there are people waiting to help you through.
 
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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2012 at 11:14pm
MrsW2002
I also am glad you have found this site. Hmm something jumped out at me and I would like to ask you...Why are you having your ovaried removed before finding out if BRCA+? I don't believe this to be necessary unless youtest positive.
The other thing I want to mention, a lot of us dealt with low white blood cell counts. Your doctors should be able to help with that, they will not give you chemo if that dangerously low. Also A/C can have a lot of side effects (you will find threads here for that), if you poured over this site then you probably already know these things. Taxol (atleast for me) was rougher with the Nuelasta shot, this is when the bone pain really kicked in.
 
Keep us posted, ask anything, SCREAM about it all, cry when needed ( we have done it all). Be kind to your self. You will get your life back :)
All my best,
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsW2002 Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2012 at 11:52pm
You know, Natalie, I'm ashamed to admit I don't know why my doc was so anxious to take out my ovaries.  I'm assuming because we're all under the assumption that the tests will come back BRCA+.  The day I was told that was at the appointment where I went in thinking it was a self-contained tumor, chemo then lumpectomy, easy-peasy, and then found out it was much more.  That whole day is still a blur.  I even had my husband with me, but he admits his world started spinning at that moment as well. 
 
Donna - I was diagnosed about a year ago with low Vitamin D, so I've been taking Vit D since then to build it up.  Last count, in January, it looked really good.  I'm still taking my Vit D...good to know that it will help the chemo! 
 
At my follow-up last week, my doctor said they wouldn't give me the next round of chemo unless I got the cell count up again.  I'm scheduled for my second round this coming Thursday.  I'm hoping that the levels are up enough.  I can't believe I'm almost looking forward to another round of chemo, but the 2nd round seems like the magic number.  I was told after the second round, I should feel the tumor shrink.  Right now, all I can seem to focus on is my left breast & it's giant mass.
 
And I've heard repeatedly that after the second round I can pretty much guarantee that my hair will begin to fall out (I've got a few strands here and there that have fallen out so far).  Maybe not looking so much forward to that.
 
And it may sound silly, but my husband and I are taking a picnic lunch with us to my second round.  I'm kinda looking forward to a picnic with my love.  Trying to find a positive in this...can't remember the last time I went on a picnic with my husband, even if it is in an infusion room.  :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2012 at 12:34am
Dear Mrs.W,

I truly, truly hate to write this but I would suggest you get a second opinion at a NCCN facility.

You will have to travel, if you choose to do this, because as you can see on the map there are no NCCN facilities in Las Vegas or anywhere else in the state.

http://www.nccn.org/members/network.asp

I know it's a trip but I would suggest you consider going to MD Anderson Cancer Center in Houston. They are ranked the number one cancer center in the country.

I realize you have a lot going on but if you have good insurance and the strength to travel that would be my suggestion. 

I am not a medical professional and I cannot/will not give you medical advice but maybe a talk would help you in some way? I am sending you my contact info, just in case you would like to talk.

Also, in my unprofessional opinion a picnic lunch is not advisable when you are having an infusion..please ask the oncology nurse what foods you might consider eating and also please make sure you are taking some anti-nausea meds to 'stay ahead' of the nausea.

good luck to you,

Steve




Edited by steve - May 14 2012 at 10:28am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Hello MrsW,

I am glad you have a great guy by your side, and you are so right to look for the positive. It makes all the difference.  The picnic lunch sounds perfect!  Second ( and even third) opinions can be very helpful at any point during your treatment.  Taking notebooks and/or tape recorders to all of your appointments is helpful too. I write my questions down before each appointment and take notes as the doctor answers. I keep all of the papers and notes in a binder and for me it lessens the confusion. For wigs and scarves , TLC ( American Cancer Society) has good products, sent quickly. Once your hair starts to go, cutting it very short helps.  Having a cute wig and some scarves ready to slap on helps too. I was surprised how much losing my hair affecting my willingness to go out of the house at first- but I quickly got used to it once I found a wig I liked.  For others it is just no big thing!
Sorry if you have this info already- we have all been through it on this site and are here to support you through it too. KarenC.
2/25/11 BX Lft SNode/TN.Trial of Gemzar/Carb/Parp 3/31-6/31.BMX
7/11.Clear mrgns,6/30 nodes.TaxolX12,DD A/CX4 done1/3/12.25 Rads/Xeloda/bolus pad done 2/28/12.PET-7/12

BRCA-Ki6720%.Stg111a,gr3,RCB3
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsW2002 Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2012 at 12:58am
Unfortunately, traveling is out of the question.  My insurance is, well, ok as long as I stay in state.  I trust my doctor, I've talked with others at a cancer support place I've attended and I'm told that I have one of the best in town and I'm at the best cancer center in town, so I've felt blessed to be there. 
 
Is it too late, though, for a second opinion now that I've already started treatment?  I was so upset with the diagnosis taking so darn long that when I was able to get treatment started quickly (as quickly as my insurance would allow) that I jumped on it. 
 
Speaking of insurance...they've denied my second fill of Emend and Zofran scripts.  Looks like I'll be making phone calls tomorrow.
 
My infusion is running right through lunch, so I was thinking bland sandwiches.  My first time, we had lunch from the cafeteria, and ick.  At least my bland sandwiches will be homemade. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2012 at 1:32am
Anti nausea drugs are so important, i am always amazed when insurance denies coverage. Have your dctors mentioned adding another chemo when you have taxol? A carboplatin or gemzar?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KarenC Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2012 at 1:33am
Never too late for second opinions - In my opinion it is good to get other doctor's thoughts about all of your treatment options, and if insurance or your private funds permit, to get readings by two different pathologists of your path slides after surgery. I was getting Dose Dense chemo- every two weeks, so my insurance denied Emend and Zofran refills at first,  thinking I was asking too soon.  I had to have my MD call to clear it up.  One thing the onc nurses told me- don't bring food you love to chemo because afterwards you may not want it anymore. Bland food is a great idea, and always cook fruits and veggies when your WBCs are low.  Buy Ensure ( Safeway has a cheaper version) to sip for energy when food doesn't taste good. To minimize mouth sores , rinse your mouth after meals with tepid water and 1/8 tsp salt, 1/8 tsp baking soda, use Biotene products and use a soft toothbrush very gently. No flossing when your WBCS are low. Hope your fever resolved quickly!  KarenC.
2/25/11 BX Lft SNode/TN.Trial of Gemzar/Carb/Parp 3/31-6/31.BMX
7/11.Clear mrgns,6/30 nodes.TaxolX12,DD A/CX4 done1/3/12.25 Rads/Xeloda/bolus pad done 2/28/12.PET-7/12

BRCA-Ki6720%.Stg111a,gr3,RCB3
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2012 at 8:43am
I would question your doc about the ovary surgery and why. It really is not a given unless you are + in the genetic counseling as I mentioned b4. What about a second opinion by phone, I am sure Steve could recommend a number of docs. Even a phone consult if you are able to have records, pathology reports sent etc. b4 hand. 
I do remember the hair after the second infusion coming out a lot more. I did the buzzer I think after my third, after I started using the tape roller on my pillow to remove hair. In the shower is sad and shocking also. The buzzer was easy, and it gave me control. 

As you can see everyone is really great here.

All my best,
Natalie

TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2012 at 10:10am

You might ask your infusion center if they have any free samples of Emend or Zofran.  My center did for women that did not have insurance or who were under-insured.  When I had my recurrence and had to do chemo again, the infusion center changed their practice and put the Emend in the pre-meds prior to chemo.  They said they had too many problems with insurance companies covering the Emend after chemo so they changed their practice.

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2012 at 11:47am

The center where I had my infusions a few years ago has recently changed its practice.  They do the Emend in the pre-meds also due to the difficulties they encountered with insurance companies agreeing to fill prescriptions for the oral Emend.   Hopefully, this will become an option for you.

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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Eileen1234 Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2012 at 9:06am
Hi, I just joined this group as well. Seems we have alot in common. I just finished Chemo , very rough. Had Pet scan yesterday. Blood test today to see how I am doing... Plan to have mastectomy end of month.  30 days of Radiation and reconstruction 3 months later.... Alot to take in... My life is on hold.  I am off work (2 months now)  I am 45 BRCA pos. and Triple Neg. History of BC  mom and Aunt( both living)   Whirlwind since Nov 11th.  Stage 2a and Grade 3.  HAd 2 lumpectomies left breast. Left lymph nodes 3 pos out of 12.   Seeing my oncologist today! I have tons of questions!! Hang in there. ask questions, pray alot, take care of YOU... any questions write me.... Eileen
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Hi Eileen!  Yes, it does sound like we are on the same path.  Sending you good vibes for a good-looking pet scan.  

I'm scheduled for Round 2 of A/C tomorrow.  Keeping my fingers crossed that my WBCs are cooperating.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Eileen1234 Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2012 at 9:16am
Thanks!! Pet scan all clear. Blood test was great.  I took vitamins the whole time on chemo! Ester C immune builder with C. also Gummie Vitamins and B 12 sublinguals. The entire time and my counts stayed great. That and advil for swelling!. Good luck to you. Any questions write me.  I am ready for Bi/lat Mastectomy in the following weeks. end of May.   Then My radiation. I want this to be overwith.  Not scared anymore. Just want my life moving frwd.  Taxotere not as bad as A/C . My nails are just turning black and blue now.  I plan on fighting this TNBC and hope it doesnt return in the next 3 yrs!!!!      Take CAre of yourself on the chemo....and write me anytime. Eileen in Mobile Alabama, staying Sunny and Blue skies above, helps me get through the daysSmile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote turtle Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2012 at 11:45am
MrsW

I haven't read thru all the posts, but I just wanted to chime in with a welcome, and a suggestion to take Claritin (not with D) after the Neulasta shot. It helped me a lot with the bone pain and other side effects. I had night sweats and felt horrible the first time after Neulasta, and although it still sucks, taking Claritin has definitely improved my side effects.

I would also echo what others have said about ovary-removing surgery. First of all, you need to get thru chemo and surgery (breast) first--i.e. treat the cancer you have. Wait to see what the genetic tests indicate before pursuing ovary removal or other surgeries. Even if you do test positive for a BRCA mutation, you may want to wait on surgeries until you see how you have responded to chemo, because more chemo may be advised, and you don't want to delay this while you are recovering from another surgery.

I wish you all the best!
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Eileen1234 Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2012 at 8:51am
Mrs. W  Hope you are feeling okay. Thinking about you. Stay strong... 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MrsW2002 Quote  Post ReplyReply Direct Link To This Post Posted: May 31 2012 at 10:50pm
Thinking of you, Eileen.   Did you have your surgery? How are you feeling?

I had to take a break from cancer madness for a bit, so I've been quiet.  I ended up in the hospital last week with an infection that sufficiently scared the heck out of me, but I'm much better now.  I had my third A/C treatment today. My next Nuelesta shot is tomorrow, and this time around I'll try the Claritin trick.  I certainly can't hurt, and oh, I just want to feel better. 

I went in last week for my genetic testing; I'm very curious on the results.  A tiny, ittybitty part of me wants it to be positive so at least there's a reason for this madness, but that's overwhelmed by wanting it to be negative for my brother and his family, for my son, for my parents.   I want nothing more than for them to never have to go through this.

I've spoken to my doctor about the ovaries, and she stated that this will be something we worry about "down the road", definitely not until I'm healed and strong again.  I'd actually be going back to my gynecologist for this, so it will be something I discuss with her.

So here's to another round down, and a weekend of sleeping. 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote KarenC Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2012 at 12:22am
MrsW- sorry to hear about the hospital. I had a stint in the hospital due to C. Diff. and it is like insult to injury, isn't it? I am glad you are out and able to continue through your A/C. I had 12 weeks of Taxol before the A/C and tolerated it well- I hope the same for you.  After the C. Diff extravaganza I watched my WBCs like a hawk , ate only cooked fruits and veggies, and I think it helped.  All the best, KarenC.
2/25/11 BX Lft SNode/TN.Trial of Gemzar/Carb/Parp 3/31-6/31.BMX
7/11.Clear mrgns,6/30 nodes.TaxolX12,DD A/CX4 done1/3/12.25 Rads/Xeloda/bolus pad done 2/28/12.PET-7/12

BRCA-Ki6720%.Stg111a,gr3,RCB3
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