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gailw View Drop Down
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    Posted: Dec 07 2009 at 7:02am
Hi all. 
 
I am new to this forum following my recent diagnosis of TN.  Recovering from a mastectomy and reconstruction and waiting to see the consultant for my chemo regime.  Had breast cancer in the same breast 15 years ago and thought I was clear from all of this!!  Hormone tests not available at that time, so I have no idea if that was TN too.
 
I have read a lot about TN, but would welcome some ideas on what chemo regime to expect, and any questions I should be asking at my appointment.  It's all very daunting!!
 
BC 1994 - Lumpectomy and Rads. Diagnosed Oct 2009 - Mastectomy, waiting for chemotherapy
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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: Dec 07 2009 at 8:00am
Welcome and sorry you had to find us.  Also sorry you have to go through this again after 15 years!  You'll find some excellent information on this site, check out the resources section.   Can you tell us a little more about your diagnosis?  Tumor size, nodal involvement, etc. 

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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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2009 at 8:59am
Welcome Gail,
As Donna said, we hate you have to use this site but we are all in this together. There are some very knowledgeable people here and will help all they can. Just ask.
If you will look at my stats it will tell you what my tx was. It would be hard to answer your question about tx without knowing your info.
I do suggest you write down all the questions you have on your mind. Also, take paper and pen with you and take notes, or a recorder. It's always good to have someone with you. They sometimes hear things you don't.
Also, if you feel in need of spiritual support, we have that available under the forum Support Groups, (Spiritual Support).
Okay, take a deep breath and continue on!
 
 
Donna, or anyone,
If you know the link to "questions to ask your onc" will you post it for Gail???
 


Edited by Carol (Tenn) - Dec 07 2009 at 9:03am
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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gailw View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gailw Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2009 at 9:56am
Had a 18mm grade III tumour with multifocal DCIS.  Sentinel node was clear - didn't have any lymph nodes left after the last time to test!  Was feeling very positive about the results until I saw the implications of triple negative.
BC 1994 - Lumpectomy and Rads. Diagnosed Oct 2009 - Mastectomy, waiting for chemotherapy
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2009 at 10:02am
Gail,
Btw, Gail is my sister's name. She is a 16 year survivor of bc, not tn, but cancer none the less.
 
While it's true that TN is different than all the rest, it seems like yours was caught early. Just continue to be positive, that's half the battle. Others will come along and have a lot more things to add. You have come to the right place for advice, counsel, and most anything else you might need.
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Sethsnana View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sethsnana Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2009 at 7:32pm
Originally posted by gailw gailw wrote:

Had a 18mm grade III tumour with multifocal DCIS.  Sentinel node was clear - didn't have any lymph nodes left after the last time to test!  Was feeling very positive about the results until I saw the implications of triple negative.
 
Gail, at the time I had my core needle biopsy in October, I was told I had a 1.6cm DCIS tumor and would only need a lumpectomy and radiation (no chemo).  The surgical oncologist knew I was triple negative after he received the pathology reports.
 
It wasn't until I had my lumpectomy and sentinal node biopsy (nodes were clear) on November 10th that I was diagnosed with a 1.6cm multifocal invasive ductal carcinoma.  I was told then that because of the size of the tumor and the fact that it was invasive, that I needed not only radiation, but chemo..
 
I don't know about the experience of anyone else on here....
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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: Dec 07 2009 at 8:27pm
Originally posted by Carol (Tenn) Carol (Tenn) wrote:

Donna, or anyone,
If you know the link to "questions to ask your onc" will you post it for Gail???
 


Gail,

Try this link:

http://www.tnbcfoundation.org/questions%20for%20bc.pdf

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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gailw View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gailw Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2009 at 10:15am
Thanks for all your encouragement so far.  I go to find out my chemo regime tomorrow - and will no doubt be asking for information after that!
At least I know it won't start until the new year, so am looking forward to Xmas with my family.
 
BC 1994 - Lumpectomy and Rads. Diagnosed Oct 2009 - Mastectomy, waiting for chemotherapy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sethsnana Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2009 at 12:14pm

Gail, with the small size of the tumor, I am curious about why they are recommending chemo..  Did they say it was because you are triple-negative? 

Renee
dx 11/09 1.6 cm IDS (nodes clear), lumpectomy and mammosite radiation. ACx4 + 12 weekly treatments of Taxol, started on 1/5/10.
Completed Taxtol 5/19/10. CT scans lungs,liver clear 6/7/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2009 at 2:02pm
Hi Gail and welcome.
 
Please let us know what chemo you will be taking.
 
Many have Adriamycin, Cytoxan and Taxol or Taxotere but there are other chemos.
Platin drugs are supposed to be good for TNBC.
 
Also I would like to suggest you get copies of your path, any scans, bloodwork etc., to keep in your own file.  Look it over, it might bring questions to mind.
 
We have in our News/Resource section alot of info on TNBC, also chemo and rad tips.
 
Once you learn what you will be doing we can help you more.
 
I'm so sorry you are going thru this a second time.  I have also although only had a 4 yr spread.
 
We will be here to offer support, info, or you can just write to vent.
 
 
Another tip, you might consider Certified Genetic Counseling.  This would be a test for the brca 1/2 mutation.  Many tnbc women are brca1.  This is important info for you and your family.
Do you have any familial cancer?
 
 
A good website to check out on this is  http://www.facingourrisk.org
 
It makes such a big difference when you are in a group who understands what you are going thru.  Hope you have good family/friend support around you.
 


Edited by trip2 - Dec 08 2009 at 2:05pm
Stage 2 2003
Stage 1 2007
BRCA 1+
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gailw View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gailw Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2009 at 7:49am

Chemo has been recommended as I previously had radiotherapy on the same side, and it can't be done twice.  The chemo is based upon TN dx and is to be sure that nothing has escaped via the bloodstream from what I can understand.

Feel I  have to hit this with everything offered so will go with the onc's recommendations - dreading going bald though!!
 
Will have genetic testing - I am the first in my family to have bc - but I do have an 11 year daughter so am obviously anxious for her....
 
Will post again when I know the drug combination..  Thanks everyone again for your comments
 
BC 1994 - Lumpectomy and Rads. Diagnosed Oct 2009 - Mastectomy, waiting for chemotherapy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sethsnana Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2009 at 12:33pm
I am so sorry you have to go thru chemo, Gail!  I'm surprised they didn't tell you what chemo regimen they recommend yesterday. 
 
One good thing about mammosite, according to my radiologist oncologist, is that if you need radiation to that side again, you can have it..
 
The thought of going bald scares me..  I DO NOT look good in hats or scarves (I've tried wearing them).  I guess I just don't have the right face..  But, I am going to have to wear them sometime anyway, because I certainly don't want to have to wear a wig all of the time..
 
Let us know when you have more info on what the Dr. recommends..
 
Sorry!!  :-{
dx 11/09 1.6 cm IDS (nodes clear), lumpectomy and mammosite radiation. ACx4 + 12 weekly treatments of Taxol, started on 1/5/10.
Completed Taxtol 5/19/10. CT scans lungs,liver clear 6/7/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gailw Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2009 at 3:29pm
Saw the oncologist today and I now know I have 3xFEC and 3xTaxotere in a 3 weekly cycle.  He told me I would probably lose my hair - and gain weight.  
 
Any other info on side effects would be great.  I'm going for the wig too - definitely don't have the bone structure to carry off anything else!
BC 1994 - Lumpectomy and Rads. Diagnosed Oct 2009 - Mastectomy, waiting for chemotherapy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sethsnana Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2009 at 3:39pm
Here's a good site..  It has a lot of good information:
 
 
Good luck!  We are both going to need it... I don't know what the FEC regimen is... I'm going to check it out..
 
Take care!
 
Renee
dx 11/09 1.6 cm IDS (nodes clear), lumpectomy and mammosite radiation. ACx4 + 12 weekly treatments of Taxol, started on 1/5/10.
Completed Taxtol 5/19/10. CT scans lungs,liver clear 6/7/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2009 at 3:50pm
Hey guys, I'll be happy to send anyone of you my wig....I paid a lot of money for it and wore it 3 or 4 times...lol....It's very light weight and all but I still felt like I had a football helmet on, wore
caps most of the time. I had one to match each outfit. I'm sure I didn't look all that hot in them but what the heck, I'm fighting cancer not trying out for Miss America....LOL
Anyway, I'm going to do what I do best and pray that both of you do well with your treatments.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2009 at 3:51pm
Dear Gail,

We are sorry you had reason to be here but happy that you found us. Trust me when I say that TN is a beast but not as bad as it is made out to be by others who have other types of BC. Your current cancer is almost certainly a new primary unrelated to the old BC. If the previous one was TNBC, it would surfaced a lot sooner than now.

FEC->T is a good strong regime. E is a better Anthracycline than Adriamycin in efficacy and side effects.

Regarding side effect, there is a very nice thread in the tips section. I shall look for it and post a link here. The only comment I'll make here is that you should not have to suffer nausea or vomiting these days with chemo. They have excellent meds to prevent that. One of them is decadron - a steroid. If you take decadron in pill form for taking at home besides getting it in the IV on chemo day, you will get a steroid high and develop a strong appetite which leads to weight gain. If you don't want that, you may want to ask your onco if they will limit the decadron doses.


Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sethsnana Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2009 at 3:51pm
Gail, here's another one specifically regarding FEC treatment:
 
 
Renee
dx 11/09 1.6 cm IDS (nodes clear), lumpectomy and mammosite radiation. ACx4 + 12 weekly treatments of Taxol, started on 1/5/10.
Completed Taxtol 5/19/10. CT scans lungs,liver clear 6/7/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sethsnana Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2009 at 7:31pm
Originally posted by Carol (Tenn) Carol (Tenn) wrote:

Hey guys, I'll be happy to send anyone of you my wig....I paid a lot of money for it and wore it 3 or 4 times...lol....It's very light weight and all but I still felt like I had a football helmet on, wore
caps most of the time. I had one to match each outfit. I'm sure I didn't look all that hot in them but what the heck, I'm fighting cancer not trying out for Miss America....LOL
Anyway, I'm going to do what I do best and pray that both of you do well with your treatments.
Love and Prayers,
Carol
 
Thanks for the offer and prayers, Carol... We had over 15" of snow here since yesterday and it is going to be below zero tonite... a record for good old Iowa!  :-{ 
 
I'll take you up on the offer of the wig if nobody else has asked for it..  I'm sure I'm going to need it.. Bought one only because it was cheap... If it doesn't look good on me, I can send it back, or you can tell me what you want me to do with it...  I'll PM you..
 
Renee
dx 11/09 1.6 cm IDS (nodes clear), lumpectomy and mammosite radiation. ACx4 + 12 weekly treatments of Taxol, started on 1/5/10.
Completed Taxtol 5/19/10. CT scans lungs,liver clear 6/7/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2009 at 12:36am
Hello, I just thought I'd let you know that insurance covered our wig expense 100%.  FYI, make sure you get pre-approval and the oncologist writes a prescription for it
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 10 2009 at 7:52am
My insurance also covered all or most of the expense of the wig.  I think there might have been a small deductible.  Definitely check with your insurance company to see if they'll cover it.  Also on this site is information about a company that will send you a free beautiful headwrap/scarf.  Check out the link:

http://www.franceluxe.com/i/goodwishesscarves/Good+Wishes+Scarves.html
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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