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Would you do the extra chemo?

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Stephi View Drop Down
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    Posted: Feb 07 2010 at 2:27am

Hello everyone!  I was diagnosed in April 2009.  I did adjuvant chemo (FEC) and then had a bilateral mastectomy in June.  At the time of surgery, five sentinel nodes were removed and negative of cancer cells.  In September, I felt an enlarged axillary node.  It was biopsied and was malignant.  Six rounds of Taxotere followed.  A few weeks ago, my surgeon performed an axillary dissection and removed eleven nodes.  All came back clear ... no signs of cancer.  We assume that the taxotere did its job. 

Now, my local oncologist wants me to add Carboplatin and VP16 as extra assurance to prevent recurrence.  She sites a study from the 2004 ASCO conference which shows this combination improves the ten year survival rate especially with tnbc.  I want to do anything I can to keep this cancer from coming back.  My onc is a twenty year breast cancer survivor herself.   Has anyone had this combo?   Any thoughts would be greatly appreciated.
 


Edited by Stephi - Feb 07 2010 at 2:50am
TNBC DX 04/09 age 34 2.5cm
Bil. Mast. 06/09
5 Sent. Nodes Removed/0+
6 FEC/6 Taxotere/2 Carbo&VP16
Ax Dissection 01/10
Rads done 06/10
Recurrence: sternum,liver,&nodes 12/10 Started Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2010 at 10:21am
Hi Stephi:
It sounds like you have been through a very difficult journey! Your onc sounds like she wants everything possible for you to beat this TNBC.  I had CT x4 and 16 rounds radiation so I am not sure about Carboplatin and VP16?  There are others on this fourm who will probably respond to you tomorrow.  The weekend is relatively quiet.  Whatever  you choose to do we are here for you!
Take care, all the best - Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2010 at 11:22am
HI Stephi,
 
I am also not familiar with that chemo regimin.  This is a personal decision, however, my personal feeling, for me, is give me everything you've got.  I want all ammunition possible to fight with. 
Again, it is a personal decision, and not every one feels as I do. 
 
HUgs!
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2010 at 12:13pm
Stephi,

I too am not familiar with the chemo regime they're recommending.  However, if it was me, I'd do everything to prevent a recurrence.  Wishing you the best. 

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 scared Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2010 at 6:12pm
Hello Stephi,

My name is Dave and I have found a lot of help here in this forum, but there is another one I use too and I took the liberty to post your question there.  I was hoping that one person in particular would make a response to your question and he did.  He is a retired oncologist and here is what he wrote in reply to my posting your question there:

"In my twenty years of experience - for what that is worth - Carboplatin + VP16 is not a very good treatment for previously treated breast carcinoma.http://www3.interscience.wiley.com/journ…
I have not seen the ASCO abstract you mention.
Catch 22 situation.
If you do not try this combination and the breast carcinoma progresses, you will always wonder if the treatment would have helped prevent recurrence.
If you go through additonal treament with an inferior regimen - and the malignant disease never comes back - you will never know if the added treament made the difference or whether the Taxotere did the job.
Hmmmm. Very tough decision.
It is always difficult to decide when treating a microscopic malignant disease which might be there but cannot be seen with any test, imaging study, or examination.
The carboplatin + VP16 would probably be easier to tolerate side effect wise than the FEC or the Taxotere.
The expense will be considerable.
Is it necessary? No one knows.
Will it make any difference? No one can know that either.
Not sure what I would do myself here.

I would estimate less than 10% chance that the added Carboplatin + VP16 treatment cycles would make any difference, but if there were one chance in a thousand that it would help - would this person want to take it? Personal decision here. These are very long and complex discussions between patients and their oncologists. The patient has the last word."

Tough question Dave.

Source(s):

MD medical oncologist - cancer specialist physician for 20 years

This was posted in Yahoo Answers in the Cancer category.


Edited by scared - Feb 07 2010 at 6:13pm
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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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2010 at 9:51pm
Hi Dave,

Copied from Dave's post
""If you go through additonal treament with an inferior regimen - and the malignant disease never comes back - you will never know if the added treament made the difference or whether the Taxotere did the job.
Hmmmm. Very tough decision. Not sure what I would do myself here.""

Dave, I have a feeling that if you were a woman who'd had breast cancer and a drug combination like Carboplatin + VP16 was offered to you, the choice would not be "tough", especially since this could potentially be a drug that would "save your life".

If I took the drug and the cancer never came back I wouldn't care if it was the Carboplatin + VP16 or the Taxotere that did the job. I wouldn't even sit around trying to justify taking it. I know it's Stephi's decision, but as for me, I'd most likely take the drug....

Good Luck Stephi whatever your choice.....

Thanks,

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 scared Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2010 at 10:16pm
Lillie, I did not say it was me, I just asked a retired oncologist in another forum for his thoughts, personally I do not have the answer, but again not too many had answered the question or had the expertise to answer it with any professional authority.

If it were me, I would probably do it, like my wife did when she was told by her oncologist to do a certain treatment for the BEST survival rates.  All I did was put it on another forum where a retired oncologist answered her question when nobody else had with any sort of expertise or experience in regards to the question asked.

Dave


Edited by scared - Feb 07 2010 at 10:18pm
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 Stephi Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2010 at 10:53pm

Thanks to you all for the advice.    Dave, thank you for posting my question on another forum.  I greatly appreciate the feedback! 

I have decided to go forward with the additional chemo.   As you all know, this is a tough journey to travel.  I don't want to have any regrets.  I want to do everything I can to prevent the cancer from coming back.
 
Wishing you all the best,
 
Stephi
TNBC DX 04/09 age 34 2.5cm
Bil. Mast. 06/09
5 Sent. Nodes Removed/0+
6 FEC/6 Taxotere/2 Carbo&VP16
Ax Dissection 01/10
Rads done 06/10
Recurrence: sternum,liver,&nodes 12/10 Started Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2010 at 8:45am
Dear Stephi,

I don't mean to complicate your life when you have made a decision and I am not a medical professional.

I checked with a breast oncologist at a major cancer center and was told that their preliminary advice  would be to not have additional chemotherapy but rather have radiotherapy. Their final advice would only come after reviewing all of your records (including your pathology slides) and meeting with you in person.

The breast oncologist I spoke to also recommended an oncologist in New Orleans by the name of Dr. John Cole at the Ochsner Clinic.

http://www.ochsner.org/find_a_doctor/doctor/john_cole/

Again, I am not recommending you do or not do anything regarding chemotherapy or radiotherapy but rather suggesting you think about getting a second opinion.

If you send me a PM I will send you the name of the breast oncologist at the major cancer center. This physician would be willing to see you or the contact information for Dr. Cole is listed above.

I have no idea what Dr. Cole's recommendation would be.

Second opinions are difficult, at times, especially when they vary from the advice you have received. You then have a tough decision to make. I personally am a great believer in second opinions when the decision is as important as yours is.

Again, I am not a doc and will never give you medical advice.

The only thing for sure in all of this is that I sincerely wish you the best of luck whether you decide to do the chemo or seek a second opinion.

all the best,

Steve




Edited by steve - Feb 08 2010 at 8:55am
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 Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2010 at 8:56am
Steve, I'm glad you said that because that was the the thought going thru my head, "why not radiation?"  but I don't feel as knowledgable as you guys so I was biting my tongue.  Did they mention radiation, Stephi?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2010 at 9:15am
Dear Stephi,

A question please.....did your oncologist mention having genetic counseling/testing for the BRCA mutation? Having early-onset TNBC is generally considered to be reason enough to get such counseling/testing even in the absence of a family history of breast/ovarian cancer on either your mother or father's side.

BMC Cancer. 2009 Mar 19;9:86.

The prevalence of BRCA1 mutations among young women with triple-negative breast cancer.

Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, Desai D, Zandvakili I, Royer R, Li S, Narod SA.

Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com

BACKGROUND: Molecular screening for BRCA1 and BRCA2 mutations is now an established component of risk evaluation and management of familial breast cancer. Features of hereditary breast cancer include an early age-of-onset and over-representation of the 'triple-negative' phenotype (negative for estrogen-receptor, progesterone-receptor and HER2). The decision to offer genetic testing to a breast cancer patient is usually based on her family history, but in the absence of a family history of cancer, some women may qualify for testing based on the age-of-onset and/or the pathologic features of the breast cancer. METHODS: We studied 54 women who were diagnosed with high-grade, triple-negative invasive breast cancer at or before age 40. These women were selected for study because they had little or no family history of breast or ovarian cancer and they did not qualify for genetic testing using conventional family history criteria. BRCA1 screening was performed using a combination of fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication screening, the protein truncation test (PTT) and fluorescent multiplexed denaturing gradient gel electrophoresis (DGGE). All coding exons of BRCA1 were screened. The two large exons of BRCA2 were also screened using PTT. All mutations were confirmed with direct sequencing. RESULTS: Five deleterious BRCA1 mutations and one deleterious BRCA2 mutation were identified in the 54 patients with early-onset, triple-negative breast cancer (11%). CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer.

PMID: 19298662 [PubMed - indexed for MEDLINE]

................



I am BRCA1+ and passed the mutation on to my daughter who was diagnosed with TNBC at the age of 36.

You didn't mention that you had tested so I wanted to mention it to you. If you were to test positive it is important information for you to have for yourself and your family.

again good luck to you,

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 Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2010 at 10:41am
Kelly,
I know exactly how you feel. I read these posts and then the advice and sometimes it's just what I was thinking. I don't do research like some of the others do so I keep my advice to myself. The only time answer is when someone asks for personal experience. I can comment on that cuz I know all about me...Wink
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 Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2010 at 12:27pm
Hi Dave and Stephi,

Dave, (me bad!) please forgive. I read your post last night and my comprehension was "tired"...

But, I have read posts that sounded like "first hand" experience when it was actually "first hand" advise. In lots of situation it makes a huge difference in experiencing something vs. just knowing about it.

Stephi,
You have been given some excellent advice to consider and I hope it helps in your decision making and the final outcome of your treatment. God Bless you every step of the way.

Love in Christ,

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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2010 at 4:28pm
I'm with Steve here.  I would not pile on new chemos, especially one with unpromising looking results and a poor reputation, like etoposide (V16), but I probably would irradiate the axilla and maybe even the supraclavicular nodes. 
Good luck deciding,
Denise

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2010 at 5:09pm
Hi Lillie,

Don't be concerned about it, it is nothing.  When I don't know the answer which is most of the time, I will ask other's opinions in other forums that may have more wisdom than myself.  It is a very tough situation, if it were me, I would probably get that second or third opinion.

In our situation, things were clear cut, it was evident in what we were dealing with and there was a consensus among our team of doctors to proceed with a specific course of treatment.  Personally, we do not want the cancer to return and we did everything we were told to do from the start.  So, we would look into what our team of doctors suggests and trust in them.  I would seriously look into what Steve wrote and at least give that oncologist a call.  Sometimes it is all so confusing, you want to do the best thing to beat cancer, and when something like this comes along it throws a wrench into treatment and you are looking at a fork in the road wondering which path to walk.

I value dmwolf's answer and steve's answer along with the person that gave advice on the other forum. I just don't know. 
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 Stephi Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2010 at 1:08am
There are some important things that I left off in my original question.  I apologize. Radiation is planned after chemo.  I am scheduled for five weeks of rads to the chest wall (my tumor was deep) and to the axilla (because the lymph node came back positive after the sentinal biopsy was clear).  I took advantage of the genetic testing not long after I was diagnosed.  My results came back negative for the mutation.    However, I do realize that this test is not 100% conclusive.  
 
I did meet with a doctor at MD Anderson for second opinions concerning several treatment plans.  My local onc and my doc at MD Anderson have consulted on several visits. The doctor at MD sent me back home for my treatment when I was originally diagnosed.  He agreed with my local doctors as to course of treatment.  When I talked to him months ago about adding this specific treatment of Carboplatin and VP16, he said he didn't see enough promise in these drugs for breast cancer but that the decision was mine.  
 
I spoke to my local onc again today about my hesitation.  She again said that with what she is hearing about carboplatin especially, if it were her, she would do it.   Again, my decision.
 
My mindset since the beginning has been to give it all I can to beat this demon.  I have had a few worrisome setbacks and that confirmed my feeling of having to be as aggressive as possible.  I am still leaning toward going through with the additional chemo.  
 
My concern now is this ... could it be detrimental for me to do the extra chemo?  Of course, I realize that putting more toxins in my body obviously is not good.  I keep going back to this question ...  Are my chances higher of having a recurrence of tnbc or developing leukemia later on due to too much chemo?   Is there anything else I should be taking into consideration about the extra toxins?  The doctors have all agreed that Carbo and VP16 is usually tolerated better than the other two chemos that I did previously.
 
Sorry about rambling and not putting all of this information in my original question.   This can all be so overwhelming at times.  I look forward to the day that I can finish treatment, put this ordeal behind me and move forward with life.  I am fully aware that the fears will always be here ... with every ache, with every scan, and with every tumor marker. 
 
We have to try to let go of the fears because the fears will not change the outcome.  Worrying too much, on the other hand, can have a detrimental affect on our health.   Easier said than done though, right? Smile
 
Thanks to everyone for the input and for being my sounding board!  I appreciate you all taking the time to respond.   It is a comforting feeling to know that I am not alone in this journey that is filled with tough decisions.   Best wishes to you all!!  My prayer is that one day we will not have these tough decisions to make and that there will be a cure for this dreadful disease!!! 
 
Stephi
 


Edited by Stephi - Feb 09 2010 at 1:15am
TNBC DX 04/09 age 34 2.5cm
Bil. Mast. 06/09
5 Sent. Nodes Removed/0+
6 FEC/6 Taxotere/2 Carbo&VP16
Ax Dissection 01/10
Rads done 06/10
Recurrence: sternum,liver,&nodes 12/10 Started Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2010 at 2:25am
Hi Stephi,

There is absolutely no need for you to apologize about anything...These are very difficult, scary decisions.

This is your life and you have some difficult decisions...

There are no guarantees in any of this...but I think the doc at M.D. Anderson wants you to get through this just as your local oncologist does. Perhaps another visit to M.D. Anderson would be helpful now to get an explanation as to why, specifically, they are recommending not doing the additional chemo or perhaps Dr. Cole could be of some use to clarify things to you. I mentioned Dr. Cole because I thought New Orleans might be more convenient for you than going back to MDA. Many years ago Dr. Cole taught the oncologist I spoke to, and this oncologist feels he is an excellent physician.

I would imagine that even if this chemo is more easily tolerated than others it will still take a toll on you and your body and it will postpone the start of what has been shown to be helpful in many chemos and that is the 5 weeks of radiotherapy. The radiotherapy will not be easy and another course of chemo prior to the radiotherapy may sap your strength...and perhaps it will not...and perhaps the chemo will do some good BUT, again, I think you should try to find out why MDA is not recommending carbo+VP16.

I also understand, completely, how you must be torn. Sorry for your torment. I guess MDA is saying "more is not necessarily better" and I can understand why you find that a difficult recommendation. It must, on a certain level, seem counter-intuitive. My guess is that they are saying what they are because, to date, that combination has not been proven to be particularly effective in their view, and others, as Dave pointed out.

On that point of effectiveness I would like to see the specific reference your local oncologist is referring to stating that this combo works on TNBC. Please ask for that reference. Ask for the specific study with a reference in PubMed. Sorry, "I heard it at ASCO in 2004" is not enough of a reference; it's too vague in my opinion. Where is the follow-up data since 2004 showing it works? If it worked so well, why aren't more people recommending that women, in 2010, with TNBC, use it?...Stephi, I am not trying to be difficult. I would just like to know exactly what your oncologist is referring to.

and yes, ABSOLUTELY, the final decision is YOURS..and again I wish you good luck and you have my prayers, no matter what decision you make and we will be here, supportively, for you, no matter your choice.

and when you embark upon your radiotherapy course please let us know...there are good articles in the resource section about it and many, many women here have walked down that road and can be helpful to you..so please stay in touch...

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 fighter_34 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 03 2010 at 8:33pm
I plan on asking for an additional round of chemo. I just want all the safeguard I can get. 
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