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Barb060111 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barb060111 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2012 at 11:58pm
Marion,

I live in the Philly area and received my chemo at Penn.  I met with Fox Chase too.  Always get second opinions.  You can never be too informed.  I just completed my radiation yesterday and am now considering clinical trials as I had some minor residual disease.  If you have any questions about treatment in the area, I would be happy to help.

Barb
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Post Options Post Options   Thanks (0) Thanks(0)   Quote marion66 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2012 at 6:47pm
This strategy will hopefully shrink the tumor to the point of disappearance, while killing any cancer elsewhere in my body (although there does not appear to be any).  If the tumor does not shrink, we know the chemo mix is not working and can try a different one.  This seems to be a new method on working with TNBC.  I get my port tomorrow.  I ordered a wig today. 
 from MSN: New moves to fast track breast cancer drug trials http://health.msn.com/health-topics/video.aspx?vid=663a67c8-61f0-4169-99a7-382e47a35b70&src=CPPlayer:endslate:email:uuids&from=email The MSN Video Team
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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 09 2012 at 8:30pm
Marion
Good luck with your chemo....I checked out the video.  Is your trial part of the ISPY-2 trial?  I didn't know Fox Chase is a participating site.  I am in Michigan and U of M is not a participant.
Neoadjuvant therapy makes a lot of sense to me but U of M is not recommending it
If you got on the trial even though Fox Chase is not a site, let me know how your oncologist was able to arrange it.
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 marion66 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2012 at 8:50pm
No, I am not part of espy-2.  This is my study:  http://clinicaltrials.gov/ct2/show/NCT00813956?term=carboplatin+gemcitabine+iniparib&rank=10
We have a friend at a major univ who is in the surgical onc department.  He seemed happy with this for me.  I will probably talk to him tomorrow night.  I will let you know.
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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 09 2012 at 9:27pm
Hi Marion,

Positive thoughts for your port placement tomorrow.
-----------------------------

From your link above on the clinical trial:
ARMS:
Experimental
standard chemotherapy plus BSI-201
Intervention: Drug: gemcitabine plus carboplatin plus BSI-201

ASSIGNED INTERVENTIONS
Drug: gemcitabine plus carboplatin plus BSI-201
iv, 3 week cycles
--------------------


Does this mean standard chemotherapy with BSI-201?
OR   gemcitabine plus carboplatin plus BSI-201?

                         VERSUS

Does this mean standard chemotherapy with BSI-201
OR standard chemotherapy and gemcitabine plus carboplatin plus BSI-201?

In either case, what is their standard chemotherapy?

Apologize that I did not understand the clinical trial info and asking questions.


With very caring, positive and hopeful thoughts as you start your treatment plan,

Grateful for today.................Judy

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 09 2012 at 9:43pm
Judy,

I believe the study Marion is entering is similar to the clinical trial I had, except hers is in the neoadjuvant setting.  She'll be getting all three drugs:  Gemcitabine, Carboplatin and Iniparib (BSI-201).  I hope they see good results with pCR.

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 marion66 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2012 at 7:00am
Yes, it is all three, 6 cycles, 2weeks on, one week off.  all three on day 1, just iniparb for an hour on day 4.  Not sure about arms.  Donna, was this successful for you? 
As a side, I have trouble understanding the histories.  How do I make one for myself? 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2012 at 7:55am
Marion,

Yes, the dosing is the same that I had.  It made for long days on Days 1 and 8 when I got all three drugs.  When they're done with treatment sometimes the chemo nurses will ask if you want all of the saline IV or if you just want to go.  I'd always say yes so that I'd get all the fluids in my body.  

I had this treatment combo for my recurrence and it helped get me to NED.  I didn't lose my hair on it and found the biggest side effects were fatigue, low blood counts and elevated liver enzymes.  I was able to work during treatment.

To enter your history in your signature, go to the upper left side of the screen and click on "Member Control Panel".  Then click on Edit Profile.  Scroll down until you see Signature.  Type your information that you want to appear at the bottom of your posts.  Scroll down and click on Update Profile.  

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 Disney Girl Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2012 at 2:08pm
Hi Natalie,
   I was diagnosed with TNBC beginning of March had lumectomy end of March 2011, it was stage 1 size of tumor was 1.8 no nodes and BRCA was negative like yours......I see that you had lumpectomy then later had mastectomy.....I am considering a double mastectomy fearful of return and now I'm dealing with Cellulitis. I was curious why you had mastectomy after lumpectomy and chemo? I had 2 biopsies 1 was the tumor the other was not cancer but they stated they had to keep an eye on it. I have my next mammogram in Feb, I think I just dont' want to have to worry about them having to keep an eye on it and even though my BRCA 1/2 was neg I have a alot of family history w/BC.
 
Just wondering why you had mastectomy after lumpectomy and chemo.
 
Thanks,
Barb
DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-

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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2012 at 4:42pm
Barb,
It was my personal choice, although I had no rads. Since I was 35 I was told I was loaded with calcifications and had  very dense breasts. Same month a year prior I was biopsied up the kazoo in both breasts, especially the right.
When I was diagnosed one of the surgeons I consulted with was from Sloan Kettering. She told me that this cancer was probably there 3 years ago. Really? With all the biopsies, how could they miss this?
O.k. calcifications increase your chances for cancer, although a small increased risk....still a risk just the same. Dense breasts? Dense breasts can hide cancer. I also had scar tissue from all the biopsies now,scar tissue hides cancer.
 
I found my lump by chance when my hand brushed my breast while sleeping. Inside of 3 days I had a mamo and ultrasound. Everyone felt it but it did not show on mamo, it showed on ultrasound.
I consulted 4 different surgeons, all 4 said they would do whatever I decided BUT three of them said said that Mastectomy does not decrease your chances for recurrance then Lumpectomy. The fourth one was the only one that seriously said agreed with my feelings of a Mastectomy.
 Barb I just could not understand this. If I have them take between 95% & 98% of my breast tissue removed, then there goes a whole lot of calcifications, density and scar tissue.
Sorry for the rambling. let me get to the point here cuz I'm starting to put myself to sleep now.
Knowing that it was TNBC I and my doctors agreed to get it out as soon as possible so I could get to Chemo as soon as possible. It was a significantly shorter amount of time between Lumpectomy and Chemo then it was between Chemo and Mastectomy. I felt the need to do all I could within my own personal comfort. I am 2 weeks exactly out from my mastectomy, and although the drains are really uncomfortable I am not feeling all that bad. I also got the pathology results today from all the breast tissue (yep they tested it all). They did see a very small area of active tissue? It was not cancerous. All clear and they did note that I was loaded with calcifications and scar tissue. So YAY I am once again feeling really good about my choice.
I am choosing to just skip over last year and can't wait for this year. New year....new me.
What ever you decide will be right for you. I have to hand it to you for doing the rads. If anything recurrs for me I will say God dam should haave done those rads. I hate hinesight.
 
United and Strong,
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 Disney Girl Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2012 at 4:53pm
Natalie,
   WOW!!! I'm sorry to hear that you were biopsied up the kazoo.....and then not finding anything. I totally understand the urgency in wanting to get to chemo ASAP....I felt the same way, I wanted it done and treatment started......but everything was such a blur to me still is when I look back from the time I found the lump, I knew exactly what it was....I just happened upon mine as well, I actually had an itch on the side and went to scratch it and found the lump, which the doctors are kind of surprised about because it was really in there, I say it was my grandmother (passed) who helped me find it. I couldn't wrap my brain around the whole saying that mastectomy does not decrease your chances for recurrence compared to lumpectomy. At that point I just wanted my woman hood....ya know!!! Now I wish I would have done mastectomy from the beginning but I guess everything happens for a reason.
I'm so glad to hear that you are feeling pretty well 2 weeks out from mastectomy......and YAY I'm so glad to hear about your results and your feelings with your decision....I applaud you!!!!
 
Stay Strong as I know you are
Barb
DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-

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Post Options Post Options   Thanks (0) Thanks(0)   Quote marion66 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 10 2012 at 6:58pm
The port went in easily and quickly, I just don't like this weird feeling in the vein.  I did not realize there would be 2 incisions.  Thank you for all of the good wishes.  The hospital is still working on getting my insurance to cover the trial.  Don't know why they were not jumping on this from when we signed the papers last week.  Scheduled for mammagraphy and biopsy and inserting a metal marker in the tumor for Friday.  Hoping the chemo will start Monday.   I did order a wig yesterday, but now from your reports, I am hoping I will not need it. 
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 17 2012 at 8:53pm
Hi Marion, How are you doing with your chemo?  I finally settled on a treatment plan. I made an appointment to be fitted for a wig (AC is guaranteed to cause hair loss).  My insurance is saying they are not paying for a wig even though I have good coverage.  Is yours paid for by your insurance?
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 Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2012 at 10:30pm
Lee, Marion and all,

The following info might help.
If one calls one's insurance company and ask if a wig is covered for chemotherapy ,
       one may get the answer "no".
If one calls one's insurance company and asks under what benefit or under what term
      is a "wig" used for chemotherapy hair loss covered,,
      one may get the answer:
               Wigs are not covered.
               Hair or scalp prosthesis or cranial hair prosthesis   (or a term similar to these)
                     for hair loss associated with chemotherapy is covered with a physician's
                     prescription (using the correct term)
              Sometimes the hair/scalp prosthesis is covered under one's "durable medical
                    equipment" which covers "prosthesis".
    The American Cancer Society or the social work department at center may be able to
           provide additional info and resources.
    Found this article which seems to have good info:
    http://www.wigindustry.com/102508c.htm

If the above has already been tried, sorry for repeating the info.

With positive and hopeful thoughts,

Grateful for today..............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2012 at 10:36pm
Lee,

Can your onc write a prescription for a wig (prosthesis)?  Mine did and my insurance covered about 75% of the cost.

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 Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2012 at 11:51pm
My doctor did write a prescription for a cranial prothesis but BCBS is denying coverage.
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 Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2012 at 11:56pm
Judy and Donna
Thank you for your advice, I'll see if my doctor can reword.
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 Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2012 at 12:42am
Lee,

Looked at BCBS of Michigan website.
Do not know which type of policy you have.
For the " Individiual Care Blue Plus" policy, the site has:

                                                                                    In-Network Out-of-Network
Outpatient Services
Outpatient physical, occupational and
speech therapy Covered – 70% after deductible; 12 visits total, all therapies combined, per member,
per calendar year
Covered – 50% after deductible; 12 visits
total, all therapies combined, per member,
per calendar year
Chemotherapy (IV) Covered – 70% after deductible Covered – 50% after deductible
Chemotherapy (oral) Covered under prescription drug benefit
Home infusion therapy (BCBSM-
participating providers only) Covered – 70% after in-network deductible
Voluntary sterilization Covered – 70% after deductible Covered – 50% after deductible
********Prosthetics: mandated only
               (BCBSM-participating providers only) Covered – 70% after in-network deductible ********

Then, question would be with your type of policy:
What is the "outpatient services"     "prosthetics" benefit?
    What are the prosthetics that are "mandated"?

Maybe if you call BCBS and you get the same answer that "wig" is not covered and you still get
     not covered for cranial/hair/scalp/ prosthesis, you could ask to speak to a supervisor.
With all due respect, think sometimes when one calls an insurance company, the first person one
     speaks with does not know where to find the cranial/hair/scalp prosthesis benefit.
     Sometimes think the person thinks of a prosthesis as an arm or leg etc type only.
The other thing......there could be a maximum amount allowed.....and only part of the wig cost
      would be covered (at your benefit level....? 70%, 80%, etc)
Hope above solves issues.
If not, sometimes a policy will special riders.   You could check with your employer HR/benefits
dept to confirm whether there is or is not a wig/cranial prosthesis benefit........don't know
if you have chosen to inform your HR/Personnel of your diagnosis.....so, this may or may not be
an option.

Judy

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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 6:59am
My cranial prosthesis was not covered.  I called BCBS and they explained my employer did not have it in the plan.  I called my employer HR, and she confirmed.  I then called my hospital's social worker to see if she had any coupons or associations with the salon that was recommended.  She ended up working a deal with the salon and the salon sent the hospital the bill, as she has a fund for such things.  When I picked up the wig, they gave me my deposit back.  very generous and unexpected.
Lee, are you also doing chemo before surgery?
 
My 1st day of chemo was Monday.  I think it went okay.  Was a long day with blood tests first, waiting for results, seeing the doctor, then 3.5 hrs of antinausea and chemo infusions.  My sister took me shopping yesterday, and I am a little tired, different than my usual fatigue.  Tomorrow I get a one hour infusion of the trial med only.  They are switching me to Tues/Fri next week and for the rest of the trial.
 


Edited by marion66 - Jan 18 2012 at 7:04am
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 18 2012 at 9:07am
Marion
I am getting my sentinel node biopsy tomorrow (no breast surgery) and starting chemo on 1/30. I am not on a trial - there is no suitable trial for me here so I am getting the standard dose dense AC followed by a taxane.  The taxane regimen will depend on how I fare with the AC.
You lucked out with your wig thing.  Not sure it will work for me.  My insurance provider says my policy doesn't have the rider that included cranial prostheses.
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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