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marion66 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote marion66 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 9:31am
Lee, Good luck with sentinel node biopsy.  I am not sure why i have to wait until for surgery for mine.  I am so glad we are on similar paths together.  Good luck with the social worker idea for help with the wig.  I am attending a 'look good feel better' event next week that helps with makeup and wig and head covering ideas.
DX IDC TNBC 12/11 age 45, Stage 1,Grade2,2cm,?Nodes ,BRCA-
1/12 chemo trial:gemcitabine,carboplatin iniparib 18 wks
6/12 lumpectomy+sentinal lymph node biopsy, pcr
7/12 rads
8/12 metformin blind trial
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 10:10am
Marion,
Having the SLNB before neoadj. chemo I don't think is standard practice.  In my case, I was already scheduled for breast conservation surgery with SLNB.  I got a second opinion out of town (SF) and they strongly recommended having neoadj. chemo first.  So my team here re-assessed the situation (in part because my MRI showed a 3 cm mass, not a 1.7 cm mass by ultrasound that was what the original assessment was based on) and we went ahead with neoadj.  However I was already scheduled for SLNB they said to go ahead.  Normally the folks here would do a FNA (fine needle aspirate) of axillary lymph nodes for neoadjuvant.
Keep us posted on how things are going with you.  I'm most concerned with my ability of keeping somewhat active during the whole treatment.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 1:13pm
Our Blue Cross didn't cover my wig(s) either.  However, the American Cancer Society will give each cancer a free wig and a couple of head coverings.  You might check with your local AMC office.  I ended up getting a free one after I had bought a couple of wigs -- just to give me some variety. 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Lee21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 7:37pm
Thank you for all the suggestions regarding the wig. I have tried calling the local ACS, for some reasons, the line is always busy.  After my SLNB I will call the social work department to see if they will help. The nurse practitioner was saying a lot of things about insurance coverage have changed since the beginning of the year so maybe this is part of the problem.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 9:19pm
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 9:52pm
Marion,

What good news to hear how well your first chemo infusion went.
Some find the first infusion sets the pattern for the rest of course........and /or once first infusion
is done, then one's plan of supporting meds can be adjusted with one's MD as needed.
Here's to a good experience for tomorrow.

You probably have seen all the references to BRCA and Vitamin D testing on the forums.
Just in case, will copy the forum links.........and you can then discuss with your provider if
tests not already considered yet.

BCRA testing forum topic:
http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458.html?KW=BRCA

Vitamin D forum topic:   see especially p. 26 where there are several good articles posted.
http://forum.tnbcfoundation.org/vitamin-d3_topic5338.html

With caring and positive thoughts,

Grateful for today...............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 10:34pm
Marion,

An addendum:

One other thing.......have you thought about a nutrition consult at the Cancer Center?
I found the nutrition consult with the oncology nutritionist at the Cancer center to be most
helpful. The earlier one has the consult the better. I thought " I knew enough about nutrition"
but the consult fine tuned my eating plan especially during chemo when I had no appetite.
I was able to eat......just no appetite. Know everyone is different and some people have the
opposite....increased appetites.....and some no appetite change.
Disregard if already done or not needed or not helpful.

Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jan 19 2012 at 2:04am
As a former facilatator for the Look Good , Feel Better classes thru ACS, wigs are usually given out at class. The wigs are donated, many of them new with tags on them. Color and styles may vary. ACS generally gives out wigs for those not attending classes as well. Again , selection will always vary. Because of the sponsers for the class, all facilitators are licensed hairdressers. They will be able to help with selection and styling of wigs available. Most people really enjoy the class so I do encourage those going thru tx to call ACS for class listings.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote marion66 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2012 at 6:27am
Well, I am now on day 15 of treatment, my week off.  I have been doing well, maintaining a positive attitude and enjoying my company at my 4 infusion days so far.  The fatigue and chemo brain got me.  I have no nausea, just constitpation (senakot s helps that).  Day 3 of each week finds me wired from the steroid they put in the mix.  I do feel like the tumor feels differently; I think it is smaller, but my husband does not want his hopes up before I go back next Monday.  I see the radiation doc (because was not available on my first consult day) tomorrow and I hope she will measure me. I am most concerned about my hair.  Donna said she did not lose hers on this med combo, so I am hopeful.  I do go to the salon where I got the wig tomorrow to at least cut my hair to a short layered bob that will fit under the wig if it thins.
Lee...how are you?  how did your sln go?  did you start chemo? 
I am thankful to all of you for being here on this site and for all of the support.
DX IDC TNBC 12/11 age 45, Stage 1,Grade2,2cm,?Nodes ,BRCA-
1/12 chemo trial:gemcitabine,carboplatin iniparib 18 wks
6/12 lumpectomy+sentinal lymph node biopsy, pcr
7/12 rads
8/12 metformin blind trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2012 at 8:45am
Hi Marion
I am sitting in the clinic waiting to see my oncologist before starting my first chemo (DD AC- T).  Anxious but am glad to get the show on the road and fight back against the runaway tumor. My sentinel node biopsy went well - two were removed and negative. I too ordered my wig last week ( despite my best efforts the wig is not covered) and I will have to return for styling. I got my hair cut as well - about an inch now so my husband can do the buzz cut later.
Will let you know how it goes.
Best of luck 
Lee
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2012 at 8:50am
We are all rooting for you, dear Lee, as you start this journey..

warmly,

Steve
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2012 at 8:52am
Marion and Lee,
I am praying for both of you to have minimal side effects from the chemo and for this time to pass quickly.  It is a scary, anxious time, but your treatments will come to an end and you will get your lives back again!  Remember, as others have said on this forum many times, most people with TNBC survive!  Wishing you the best.
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2012 at 10:42am
Dear Marion,

good luck to you as well, and to all going through treatment,

Steve
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote marion66 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 31 2012 at 8:25am
thanks! 
Lee, such good news about the nodes!  How was infusion? I seem to only feel bad (wired from that steroid, restless, lack of focus) on day 3, then get better each day after that.  Today I go to radiologist for consult and then the salon.  I made an appt with a reconstruction dr at fox chase for a consult in a few weeks.  I still need to decide lumpectomy vs mastectomy.  Do you know yet which you will do?  It seems most on this site chose mastectomy.  I need to research.
DX IDC TNBC 12/11 age 45, Stage 1,Grade2,2cm,?Nodes ,BRCA-
1/12 chemo trial:gemcitabine,carboplatin iniparib 18 wks
6/12 lumpectomy+sentinal lymph node biopsy, pcr
7/12 rads
8/12 metformin blind trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 31 2012 at 8:52am
Hi Marion,
I feel better this morning (so far) than yesterday. The infusion itself went fine (I was mostly knocked out after the pre-meds). After the infusion, I got home, had some late lunch but started feeling very very groggy and had to take a nap. Then started feeling nauseous so I took a compazine and went to bed.  I am taking it easy.  So many meds to take!

There is some data for TNBC (but not generally accepted in the mainstream medical community) that RT may be beneficial even in the case of mastectomy (see under NEW MEMBERS > OPEN ACCESS -- I don't remember the exact spot where the links are posted.)  You should definitely go over it with your rad oncologist.  Althogh my original tumor sizing by ultrasound was small 1.7 cm, by MRI it was 3 cm so a straight-on lumpectomy would create a significant defect.  If the neoadjuvant treatment shrinks it down, I am more inclined to go with the lumpectomy. There is no evidence to suggest DCIS  in either of my breast to warrant mastectomy.  Even if I were to go with a mastectomy I am not sure I will opt for recon (more surgery, significant complication rate etc).
Good luck with the rad oncologist and salon,
Best,
Lee


12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 31 2012 at 10:37am
Dear Marion and Lee,

wishing you both successful treatments!!!

all the best,

Steve
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2012 at 12:20am
Hi Marion,

Was looking at your above posts.
Are you about to have your 3rd chemo.........will that be the halfway point?

In any case, sending good and positive wishes to you during your chemo treatment.

You mentioned about fatigue and chemo brain in one of your posts.
There is a thread on chemo brain. The entry for Dec 10/11 was some good info and references.

Thread on chemo brain: http://forum.tnbcfoundation.org/topic9064_post94334.html#94334

With all good wishes,

Grateful for today..............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Mar 16 2012 at 10:14pm
Hi Marion,

Sending caring and positive wishes to you as you continue your chemo.
Hope your pre and post chemo meds have been adjusted/tweaked to give you
as tolerable a chemo experience as possible.

Grateful for today..............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote marion66 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2012 at 4:01pm
I just want to update my situation to those who offered such support to me at the scariest time.  I went through the chemo...needed 5 units of transfusions of hemoglobin during the last 3 cycles.  I kept half of my hair and had some constipation at the start due to the anti-diarheal medicines.  My last day of chemo was May 11.  My MRI showed no evidence of previous mass!  My lumpectomy and SNL biopsy was June 8.  Achieved Cpr!  I just finished my 30 radiation treatments yesterday.  I am red and sore, but happy to be done.  I go tomorrow for the first blood test to qualify for the blind Metformin phase III trial.  I am a teacher, but will go back to work in October, because these last 8 months have worn me out!  I feel very blessed.
DX IDC TNBC 12/11 age 45, Stage 1,Grade2,2cm,?Nodes ,BRCA-
1/12 chemo trial:gemcitabine,carboplatin iniparib 18 wks
6/12 lumpectomy+sentinal lymph node biopsy, pcr
7/12 rads
8/12 metformin blind trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2012 at 4:27pm
Congratulations, Marion!  So happy to hear your good news!  I'm glad you're taking some extra time off to rest up before going back to teaching.  You need it, I'm sure.  I wish you nothing but peace, happiness and NED!
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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