Go To Main TNBC Website


  New Posts New Posts RSS Feed - New member
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

New member

 Post Reply Post Reply
Author
xmdavis View Drop Down
Newbie
Newbie


Joined: Aug 12 2009
Location: Houston, TX
Status: Offline
Points: 26
Post Options Post Options   Thanks (0) Thanks(0)   Quote xmdavis Quote  Post ReplyReply Direct Link To This Post Topic: New member
    Posted: Aug 12 2009 at 9:56am
Hi Everyone,
 
My mom is the patient and I am the researcher as I can't get her to sit down long enough to teach her anything about the computer.
 
Mom was diagnosed in 08  with T3, Triple negative breast cancer.  She had 4 AC cycles and 4 taxol cycles with very little result.  She underwent bilateral mastectomy and the cancer was metaplastic spindle cell carcinoma with 4 nodes involved.
 
We had a great couple months as they really felt that they had gotten all of the 7cm tumor and she finished up with radiation. 
 
in late 08 she developed bilateral lung lesions and the biopsy showed a triple negative carcinoma.  We decided to head to MD Anderson in Houston and have been through 2 cycles of carboplatin and gemcitabine with no change to the tumors.  We just finished 2 cycles of doxil and low and behold we had partial reduction in the tumors.
 
She has since developed tumor fever and it's a catch 22...fever no doxil, no doxil..tumors grow.
 
Has anyone ever had any experience with this?  We see the oncologist Friday and I guess I'm just trying to prepare here.  We have seen progression of the disease in the last three weeks.
 
I guess looking for a little ray of hope..
 
Marietta
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 12:21pm
Hi, Marietta.   How many lung lesions does she have?  Is there any chance they could be removed surgically?

Also, do you know her BRCA status?  There are some clinical trials with Parp inhibitors she might want to participate in. They are supposed to be very effective IF a woman has a BRCA mutation.  You might want to re-post in the mets forum, for more responses from women in the know.  Also, check out the website Inspire (http://www.inspire.com/groups/advanced-breast-cancer/) and try asking them.  That site also has nice women (though many have ER+ disease) and much more traffic than our mets forum.  One final suggestion is to ask Edge, the resident expert, in the mets forum of another really great site called NoSurrender (http://nosurrenderbreastcancerhelp.org/).

Good luck to both of you.  I know this is really, really hard.  You can count on us to support you both through whatever comes ahead.

Love,
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.
Back to Top
cg--- View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 20 2007
Location: Canada
Status: Offline
Points: 1379
Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 3:12pm
Marietta,
 
Be assured you are in a great place for your mom.
 
First Dr. Christopher Pezzi, Abington Memorial Hospital, Pennsylvania, Surgical Oncology. Here is a link to a study he was principle author of recently on metaplastic BC

 http://www.annalssurgicaloncology.org/cgi/content/abstract/14/1/166

 There is also at MD Anderson in Texas, Dr. Bryan Hennesey...who by his web page as you will see has an avid interest in metapastic BC...Might be worth a consult...

Connie
Back to Top
xmdavis View Drop Down
Newbie
Newbie


Joined: Aug 12 2009
Location: Houston, TX
Status: Offline
Points: 26
Post Options Post Options   Thanks (0) Thanks(0)   Quote xmdavis Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 3:23pm
We will find out Friday whether they are going to continue treatment.  If one oncologist decides to suspend treatment is it best to get a second opinion?  We really love her oncologist in Houston, Kimberly Koenig.
Marietta
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4454
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2009 at 9:33pm
Hi Marietta,

As I was not familiar with your mom's cancer I did a little research. It seems to be fairly rare and I would second Connie's suggestion about Dr. Hennessy. I think, as best you can, you need to find someone who really understands spindle cell metaplastic breast carcinomas.

One thing I wanted to mention is to make sure FISH technology was used to analyze your mom's HER2/neu. The study below reveals that overwhelmingly spindle cell tumors were HER2/neu+. About 10-15% of breast tumors are incorrectly diagnosed as HER2/neu negative tunors and
I think it make sense to ask your oncologist to make sure the tumor is tested again, if FISH was not used the first time.. If by some chance the FISH shows it to be HER2/neu+ then your mom might benefit from Herceptin..

I know it's a long shot but it's worth a question as is Denise's good idea to ask about genetic counseling/testing for the BRCA mutation.

good luck to you and your mom..

Anticancer Res. 2003 Jan-Feb;23(1B):669-73.Links
Metaplastic breast carcinoma: pathology and clinical outcome.

Bellino R, Arisio R, D'Addato F, Attini R, Durando A, Danese S, Bertone E, Grio R, Massobrio M.
Department of Gynaecology and Obstetrics, Sant'Anna Hospital, University of Turin, Italy.
Metaplastic breast carcinomas are rare neoplasms showing both carcinomatous and sarcomatous elements. In this report we describe eleven cases of metaplastic breast carcinoma focusing on pathological features and the clinical behaviour of six patients with breast carcinoma with chondroid metaplasia (MCC). We collected eleven cases from 1996 to 2001: immunohistochemical tests were performed in order to obtain data on estrogen and progesterone receptors and the production of p53 gene and HER/2 neu. Neoangiogenesis was studied counting vessels immunohistochemically-stained with CD31 antibody. Six cases showed chondroid metaplasia, three cases were spindle cell carcinoma and two were metaplastic squamous carcinoma. The majority of patients (64%) had pT2 tumors without axillary node metastases: only two cases with spindle or squamous metaplasia showed nodal involvement. Fifty percent of MCC were pT1b-c tumors: no axillary metastases were observed. Vascular invasion was observed in all squamous and spindle cell types and in 66% of MCC: estrogen and progesterone receptors were absent in 90% of the tumors. Immunohistochemical staining for HER2/neu was detected in 72% of spindle cell and squamous carcinomas and in 33% of MCC. Three cases staining highly for p53 were chondroid carcinomas: the staining was uniform both in carcinomatous and in sarcomatous tissue. The majority of metaplastic carcinomas had high angionesis. One patient with a chondroid metaplastic carcinoma was found to be a carrier of a BRCA1 mutation similar to the one responsible for sickle cell disease, possibly altering the spatial structure of the gene product. Only six patients had follow-up periods longer than 36 months: five women were alive and disease-free: one patient with pT2N1 squamous metaplastic carcinoma died of disease 14 months after diagnosis. The six women with MCC were alive and disease-free. Surgical and adjuvant treatment should follow the guidelines for the other most common breast cancers even if the need for chemotherapy is unknown due to the absence of large series randomized or observational data.

.......

all the best,

Steve

Edited by steve - Aug 12 2009 at 9:34pm
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
Back to Top
xmdavis View Drop Down
Newbie
Newbie


Joined: Aug 12 2009
Location: Houston, TX
Status: Offline
Points: 26
Post Options Post Options   Thanks (0) Thanks(0)   Quote xmdavis Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2009 at 7:36am

Thanks so much Steve.  I am going to speak with mom's oncologist today to find out exactly where we are in the progression of the disease.  In addition, I am going to set up a consult with Dr. Hennessey as well.  Thank you all for such great information.  I wish I had found you much earlier.  We started this process in Louisiana and I honestly wish that we had done more testing and come to MD Anderson right away.  I see through the message boards that other people have gone through the same thing.

I will post once I hear from the oncologist.
 
Thank you so much for responding.
 
Marietta
Back to Top
xmdavis View Drop Down
Newbie
Newbie


Joined: Aug 12 2009
Location: Houston, TX
Status: Offline
Points: 26
Post Options Post Options   Thanks (0) Thanks(0)   Quote xmdavis Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2009 at 1:21pm
Steve,
 
I asked Dr. Koenig about Dr. Hennesy and they are very good friends.  Dr. Hennesy has left the Breast Cancer realm and moved into Gynecology.  Dr. Koenig has consulted with him and several other doctors regarding my mom's case becuase it is so very unusual.
 
We are going to try 2 cycles of Ixempra for what looks like our last ditch effort at chemo.  Our Oncologist really feels it is time for my mom to focus on quality of life rather than try a ton of different therapies when absolutely nothing has every worked in 2 years.  We have exhausted our chemo options and have tried some of the combinations (carbo/gemzar) as well. 
 
My mother is incredibly tolerant to chemo...has some neuropathy in her feet and my concern is that gets a lot worse on the Ixempra making her less mobile for the time she has left.  My mom started this in extraordinary shape and that is why she has done so well.  She works out a lot and is very focused on never slowing down.  However, we may be at a time to slow down and focus on our family.  It is a terrible decision for she and my dad to make and we will try everything there is to try (which is a fear of mine).
 
Marietta
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4454
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 16 2009 at 1:46pm
Dear Marietta,

I am sorry the docs feel the chances for treatment yielding good results are poor...

It is so very, very, very hard for most families to accept that fact and also most doctors seem to want to try every chemo they can in an effort to try to cure.

At times, though, and I don't know if this is one of them a patient can have a better quality of life with no chemo. But, from my experience, many families really struggle, understandably, with this.

Whatever you and your mom decide you shall be in my prayers and if you need some emotional help there is a book/CDs called Graceful Passages that I found very helpful when I was dealing with my best male friend's terminal lung cancer a few years ago. It is called "Graceful Passages" and I would be happy to send you a free copy...It is a combination of religious and secular thoughts and there probably will be several passages that will not resonate with you but several that may....and again the reaction to this can be difficult...The friend I mentioned above had a wife and two daughters...I gave them all copies of Graceful Passages and asked the youngest daughter (who I am particularly close to-to consider giving it to her dad)...She was incredibly angry with me..refused to give it to him and refused to read/listen herself..."you are giving up on him and it will make him depressed."...my friend had gone from 160 lbs to about 80 in nine months and he was already weak and depressed...in any event his wife and the older daughter really appreciated it and it helped them...my friend died three days after I gave them "Graceful Passages." He never heard a single passage and I was the only one to tell him, at his request, whether he was dying...I told him, yes and we embraced and he thanked me for telling him the truth..The family was trying to avoid the subject.

in any event, Marietta, if you wish to purchase it..you can find it online
on wisdomoftheworld.com It is cheaper on Amazon but I am not sure if it includes the CDs...

and I agree it is all a "terrible decision" as you wrote....I am so sorry and again you and your family, especially your mom, shall be in my prayers..

Steve

Edited by steve - Aug 16 2009 at 1:49pm
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
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.