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My sister, my rock

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LaurieP View Drop Down
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    Posted: May 27 2009 at 11:47am
My sister is my best friend.  She called me saturday to tell me she has been diagnosed with tnbc, 2.5cmx3cm in her lymph node.  I don't know anything else about the tumor (grade?) but she has undergone extensive testing and they haven't found any mets.  She started chemo on sunday-taxol-for 12 weeks and then is switching to FEC.
She is an incredible woman, strong in body mind and spirit.  And yet she says it's bad.  I refuse to believe that. 
I have a ton of questions..like why is she just getting taxol and not A & C?
Please..give me more reason to hope!  I have a ton of good energy around this but I can't do it alone.
Thanks!


Edited by LaurieP - May 27 2009 at 11:57am
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Sunris View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunris Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 12:28pm
Hi Laurie,

Welcome to this site. You will find it to be a great source of information for you.

So sorry to hear of your sisters DX. The current treatment your sis is receiving is standard for many.
I am currently also on Taxol x 12 weeks, then upon completion of that I will have FAC. Some oncologist
choose to give AC before Taxol/Taxotere but some choose
Taxol first. Taxol has been proven to be a great success in shrinking tumors ( it's working for me!).
If I had to venture and guess, I'd say she will receive another chemo ( A&C?) upon completing her Taxol.

By any chance is she going for treatments in Texas?
I happen to know that MD Anderson's standard treatment typically is Taxol x 12 then FAC or FEC. Taxol is supposed to be very good for us Trip. Negs. I wish
your sis the best in her journey as well as yourself
in supporting her.

Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.

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LaurieP View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieP Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 12:47pm
Thank you for responding Dawn.
She is going to MD Anderson for which I am very grateful. And you are correct, she is getting FECx12 after the taxol.
 
I am so thrilled for you that your tumor is shrinking!!!! Sending you great energy!
 
LauriePink%20Ribbon
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Sunris View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunris Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 1:15pm
Laurie,

I had a feeling she was at MD Anderson....They are known for Taxol x12 then FAC/FEC x 12 more weeks....Don't know of any other treatment center with this program. Most seem to give AC x 4 then T x 4. I also am going
to MD Anderson. Love that place!! I am fortunate enough
to only live 30 miles away from the Center... What a great coincidence, huh?   

Will your sister be getting on this site ? Would love to meet her also.   
Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.

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LaurieP View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieP Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 5:51pm
I hope she does join the forum .  You have already made it so warm and welcoming. 
She lives 5 minutes from MD Anderson!   Fortunate..given the circumstances.
So, how important is grade?
And how far into the taxol are you?You doing ok with it?


Edited by LaurieP - May 27 2009 at 5:52pm
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:12pm

Hello Laurie and my dear I am so sorry to read about your sister.

You have found a wonderful spot where you can come to ask questions, vent, cry, whatever you need.  Many of us have had sisters going thru tri neg or other cancer's and we understand how hard it is for us who love them.

http://www.breasthealth.com.au/diagnosis/pathology.html

The above link will answer some of your questions regarding each women's pathology report.
A grade 3 is what most of us has.  It means it is the highest grade which means how fast the cells are growing and how active.  Most of us are grade 3 although we have a handful that are grade 2.
Triple neg bc is a very aggressive bc that is why we must fight with our biggest guns in the beginning.
 
I would like for you to suggest she get Genetic Counseling.  Any family history?  Even if you don't have familial history she still should consider the counseling.  Finding out if you do or do not have the brca 1/2 gene mutation can have an effect on important issues for her to know.  Also you can go go http://www.facingourrisk.org and learn all there is to know about familial cancer.
If she were to show positive then you and any other siblings might consider the testing for her mutation.  This would be important for the rest of you to know.
 
You can ask us whatever you would like to know and we will do our best.  The women here are very caring, genuinely want to help all of you.
No question is a dumb question.
One other thing I would like to mention is tell her to get copies of any and all path reports, she gets, any tests, scans.  She can go to the medical records office wherever she had these things done and get her own copy.
First of all the docs don't always tell us what all we might want to know.
Secondly it is a great way to to read what this "test result" said so tha we can see if there are any questions.  Then she can start her own file at home. 
 
 
I look forward to your sister joining up with us soon.
 
Best wishes, you both will be in my prayers.


Edited by trip2 - May 27 2009 at 6:26pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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LaurieP View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieP Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:21pm
Pam,
How are you feeling?
I'm touched that you have reached out.
..and we chose the same avatar!
Not sure if my sis will do the test, I will ask.  I've had my hands full with cervical and melanoma.  So I am hesitant to know the answer.  Although information is power.
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Donna Zukowski View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:26pm
Hello. I saw your message Laurie and my heart goes out to you and your sister. I first found my TNBC as an enlarged lymph node as my mammograms came back as "normal come back in 2 years". I am at MD Anderson and came down here from canada. This Fri I will have my 12th dose of Taxol and next week start FAC. I am not sure when surgery is but likely a few weeks after the FAC. In the breast the lump started out as 1.6 cm and the lymph node about 2.0 cm. After 7 doses of taxol the breast lump shrunk by 46% and the lymph node by 29%. I have been very fortunate to have side effects that have been manageable. Itchy scalp rash, can't taste food and some nasty blisters on my feet. However have been able to walk 5km a day throughout. But then since I am from Canada I have also had to take time off work and wonder if I was working this may very well take all the energy I have. Your sister is in good hands and if there are any questions I can help with?? I am a newbie myself and just diagnosed on Mar 3/09. The lymph node diagnosed on Feb 27th then had an MRI to see where it was coming from. Your sister is lucky to have you for support.
Donna
Stage 2b. 1 lymph node for sure.
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LaurieP View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieP Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:32pm
Donna<
I can only hope that my sister meets amazing women like you while she is at MD.
Keep at this.  Exercise, nutrition, positive energy for the universe.
I will of course be in Houston and would offer any support I can..New York bagel?
Laurie
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LaurieP View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieP Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:37pm
so, why do they do the taxol first if the FEC is the really tough stuff?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:40pm
Hi LaurieP,
 
I am feeling pretty good, thank you for asking.Smile
 
Yes we obviously have something other than tri neg cancer in common!
 
I realize the genetic testing is a very personal issue and I respect you and your sister's feelings on this decision to do or not to do the test.  Maybe at some point down the road you might change our minds.  Do you two have children?
 
Oh dear I did not realize you too are going thru cancer treatments as well.
Bless your heart, your family has more than enough on their plates.
You and your sister will be in my prayers.
 
Are you currently doing Chemotherapy?
 
Sincerely,
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:46pm
It sounds like they were very quick to get your sister started on chemo. I came down here on Mar 5th and started chemo on Mar 13th. Which, for me, was huge. It was agonizing and I really needed to feel like I was fighting this as soon as I possibly could. I know a month or two might not make any difference (who knows maybe for us TN's it does) but emotionally and psychologically every day after I knew was extremely difficult. I am curious how your sister found it? Was it by the enlarged lymph node? I just noticed mine in the shower one day. I knew it was not good, tried to talk myself into maybe it was a cyst. I had just had the mammogram two months before so did not really panic about it. Anyways here I am on this journey. I read in a book it is not really a journey but soldiers on the front lines. That seems a more accurate analogy to me. I so wish your sister a good response to the taxol right off the bat!
Donna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieP Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:46pm
thanks Pam...again!
I am very fortunate.  I caught my cervical early and am 8 years since surgery!  Hard to believe.  They found melanoma but only in situ so again, I am crossing my fingers. 
My sis and I both have kids.  I have 3 boys  7 yrs old and twin 5's and she has a senior in college!
Wow...
Sending you all good energy!
L
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieP Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 6:51pm

Donna,

My mom just told me she had swelling, googled it and decided it had gone away.  she went for her annual check up and they found it..in her lymph node under her arm.  It was April 29th. 
Any idea how fast she can get a response?
As i mentionned, she started on Sunday and is scheduled for regular fridays "sessions".
What can I do to support her?  Iwant to email her all of the time.  just to make sure she is still there.  But I will drive her crazy : )
Can I do anything to make her days more comfortable?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2009 at 7:30pm
Laurie you are such a gem. I found the email support I got from Canada amazingly helpful. It really made me feel cared for. If you come see her I know my skin gets so itchy and dry so unscented lotion. My sister came to visit me from Canada and suggested Vit E and epsom salts soaks for my blistered feet. Healed them up so I could keep walking. Plus cooked me food even though I was capable of doing it myself. It is very nice when someone cooks you your favourite thing. My husband is here with me as well. I am a Registered Nurse in Canada and once I go on the FAC plan to fly back and forth then have the surgery here. I will see how the FAC goes and whether I can go back to work part time. I have 3 sons as well but just a tad more grown up than yours. We are going to the older ones grad in June from SARTEK which is search and rescue where he jumps our of airplanes. But we are quite happy with this as he was a paramedic on the front lines in Afghanistan prior to this. I am not sure whether this TNBC or that 7 months he was there was more stressful.

As far as response I personally noticed my lymph node get smaller and softer in a few weeks. It started out feeling about like an eyeball and I can definitely say it is less than half that size now. I could not feel the breast tumor until about 6-7 weeks of taxol because the breast was too dense but I can feel it now. I think it is getting softer but could be my imagination. My oncologist said everyone is different and some people the tumor is gone when they measure it between 6-8 weeks. The optimum response is at least 30-50% in the breast tumor by 6-8 weeks or I think they might switch chemo at that point because the whole point of chemo before surgery is to be able to measure response and shrink it for better surgical outcomes. I think it is 20% of women will get a complete response (no cancer at surgery) after all the chemo. So that is what we hope for. I have Friday chemo as well. Next week when I start the FAC I am flying to Canada the next day to spend a couple of week with my son and his fiance as they are going to be moving across Canada. Also doing a nursing course close to where they live. if I am too wasted well I will just have to drop a few things. This has scared me. I use to push myself extremely hard but am listening to my body and focusing on good nutrition and exercise. The alternative yoga and meditation helped me survive the diagnostic phase. otherwise I would have needed presription meds. People also sent me letters and cards snail mail. Very special they took the time to do this. Donna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2009 at 3:05am
I am wondering if anyone knows if " non-small cell carcinoma" is the same as the basal cell that I have seen dialogue about. And if there is a difference what that is. My report says "non-small cell carcinoma with squamous features".
Donna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2009 at 6:00am
Hello I see the surgeon in few days and thought I saw a list of potential questions to be thinking about but cannot find it now?? Is there such a list drafted or possibly I saw it on another site.
Donna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieP Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2009 at 7:12am
Donna,
I found this list on a few sites...

10 Questions to Ask the Cancer Surgeon

  1. Why are you recommending this procedure?
  2. What are the risks? How do they compare with the benefits?
  3. How do I prepare for surgery?
  4. What type of anesthesia will I have?
  5. What happens during and right after surgery?
  6. Who do I talk to about breast reconstruction?
  7. How long will I be in the hospital?
  8. Are there any complications?
  9. When can I go back to work and resume normal activities?
  10. What are the risks of lymphedema?

 

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Sunris View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunris Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2009 at 1:02pm
Donna,

I believe non-small cell carcinoma ( squamous) usually refers to lung cancer ?   That is actually what my dad was DX with(10 yrs ago, and still in remission!! as well as my uncle ( 2 weeks ago)
Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2009 at 1:04pm
Donna up in the right hand of your screen you will see the link Resources.  Click on that, then you will get a drop down box, click on Taking charge of your own care and there should be alot of info for you to look thru.
 
 
Stage 2 2003
Stage 1 2007
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