Go To Main TNBC Website


  New Posts New Posts RSS Feed - My wifes cancer returned - What to do?
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

My wifes cancer returned - What to do?

 Post Reply Post Reply
Author
David3029 View Drop Down
Newbie
Newbie


Joined: Dec 22 2010
Location: New Haven
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote David3029 Quote  Post ReplyReply Direct Link To This Post Topic: My wifes cancer returned - What to do?
    Posted: Dec 22 2010 at 6:44pm
My wife was diagnosed and treated for TNBC 4 1/2 years ago with 2 lumpectomies, chemotherapy, and radiation. We thought that she was cured.
This week we were told that it is back and in her liver, near her sternum, and at least one other place - maybe her lympth nodes. I'm not 100% sure. Neither one of us was prepared for the finality of the new diagnosis. She is scheduled to start chemotherapy next week with, and I hope I have this correct, carbo platinum and taxol.
I asked her if she wanted to get a second opinion and she said that she didn't think that it would be any different. I can't and won't force her but I don't want to lose her.
It would seem that whatever she chooses to do at this point in time is critical and that once you have started down a treatment path any options that you may have are reduced.
I'm scared and don't know what to say to her or what advice to provide.
I accidently found this site today.
I don't know what to do.
 
Back to Top
Momof2NJ View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 11 2010
Location: Northern NJ
Status: Offline
Points: 113
Post Options Post Options   Thanks (0) Thanks(0)   Quote Momof2NJ Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 6:53pm
Dear David,
 
Glad you found this site..and sorry you have to be hear and very sorry to hear of your wife's diagnosis.
 
There are different treatment options for tnbc metastases.  A second opinion may be valuable, just to make sure.  Carboplatinum and Taxol are pretty standard treatments for metastases. I'm undergoing treatment for a recurrence and finished adriamycin & cytoxan and move to Taxol on Dec. 27.  I understand you can't make her do this, but there is an amazing support network here and tons of info.  She may be comfortable with her oncologist and that's fine....but the more info you have, the more questions you can ask.
 
There are also drug trials utilizing  PARP inhibitors in conjunction with chemo.  Ongoing trials have been very positive in disease progression.  I know others here will chime in with more info as we have many on the boards who are actually doing the PARPi regimen. 
 
Pls. post here as often as you can...this community is wonderful.
 
best,
mary ellen
 
 
2008 BRCA 1+ dx stg 1,gr 3 IDC triple neg. BM w/ recon. CT x 4. Prophy TAH 2007. Recurrence 9/13/10. 10/5/10 tumor excised. ACx4, Taxol x3, abraxane x 9. 38 rads. 7/11 NED!!!
Back to Top
zoomommy2 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 26 2009
Location: Denver, CO
Status: Offline
Points: 1356
Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 6:57pm
David,
I am glad you found this site even though I wish you hadn't needed to.  There is no finality in your wife's new diagnosis.  She should get a 2nd opinion just to make sure she is headed down the right chemo path.  There are several different chemo choices she can make.  We wish your wife had been cured from her first bout with this beast.  She needs to get her fighting glove on and not let this nasty beast win.  Several others on this site have had a recurrence or metastisis and have more personal information than I do.  Best wishes for you and your wife in her treatment.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
Back to Top
David3029 View Drop Down
Newbie
Newbie


Joined: Dec 22 2010
Location: New Haven
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote David3029 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 7:12pm
Mary Ellen,
Thank you for the information, especially about the PARP inhibitors. That's new to me. i will ask my wife to read the posts and make her own decision from there.
The Best to You,
David
Back to Top
David3029 View Drop Down
Newbie
Newbie


Joined: Dec 22 2010
Location: New Haven
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote David3029 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 7:16pm

Lee,

Thank you for your advice. I will pass all the information on to her.
The very best to you, also.
David
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 22 2010 at 7:53pm
David,

A second opinion is always a good idea.  I've had a recurrence and got a second opinion to help me feel good about the treatment plan.  Mainy posted a link to clinical trials for Triple Negative.  You might want to print this out and talk to your wife's oncologist about it.  I'm currently in a clinical trial with a Parpi.

15 trials coming available from September through today for Triple Negative   http://clinicaltrials.gov/ct2/results?term=triple+negative+breast+cancer&recr=&rslt=&type=&cond=&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=09%2F01%2F2010&rcv_e=12%2F16%2F2010&lup_s=&lup_e=

This forum is a great place to ask questions and get support.  I've learned so much from the women and men on this site.

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

Back to Top
kidzrn View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 11 2008
Location: United States
Status: Offline
Points: 171
Post Options Post Options   Thanks (0) Thanks(0)   Quote kidzrn Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2010 at 3:05pm
David,
I was just a year post treatment when I was found it had gone to my right lung. I did carbo, taxol and avastin.  Within 4 treatments, there was nothing visible by CT scan. see my sig for details. I know avastin is probably on its way out the door but for now its still available. I would definitely consider 2nd opinion and if possible the parp trial with carbo, gemcitabine and iniparib...sp?  Just an idea....but there are alot of options out there at this point....Hang in there!!!!!!christi
christi
2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, 4 CAT, then Avastin every 3 wks...NED 2/09, 2/10, 6/10, 10/10 Scans 4/11
Back to Top
David3029 View Drop Down
Newbie
Newbie


Joined: Dec 22 2010
Location: New Haven
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote David3029 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2010 at 3:31pm
Thanks to all who have responded. It has only been 3 days and we are both still trying to sort out our emotions. I will pass all of this on to her as soon as it is appropriate over this weekend.
Thank you again.
My prayers are with all of us during this Christmas season.
David
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4952
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2010 at 3:46pm
David, I often say here that the role of the spouse and inner circle is one that  just makes you feel as though you have been cut off at the knees. I've been both and all I can say is that you must recognize the different layers of stress that you are now both under.
Fear and anger have their place and cannot be ignored but they must also be sent to their respective rooms when it comes time for you two to focus on the job ahead. So let the fear pummel you for a bit but make it promise to backoff as you feel you must emerge to step forward.
 
With TN, especially these days when so much research is coming down the pike in our favor, it is terribly important to try and get a 2nd opinion. Strangely, though the doctors may not really prescribe anything different, you will learn something from each that will make you a stronger warrior.
 
The clinical trials are SO important to us TN'ers but it is important to understand that not every doctor has access to every trial. This is one more reason to ask for a 2nd opinion as the 2nd doctor may have access to a better trial for your wife. At the top of the page here you will see that the TNBC Foundation has partnered up with a company that will help sort/source clinical trials by diagnosis as well as by parts of the country. I used it to make a profile up for my sister when she was dx'd with mets and the company not only sent me a list of trials but then as associate at the company called to help walk me through the parameters.
 
Lastly, just a suggestion, but this being the holidays on top of everything else, it wouldn't be a bad idea for you to go to your doctor and talk things over to see if you should start taking any BP or anxiety meds. Your stress is a reality and you need to take very good care of yourself right now and OH YEAH, REMEMBER TO BREATHE!
 
Mainy
 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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: Dec 23 2010 at 6:03pm
Dear David,

I am saddened by the news of your wife's recurrence...

You have found a wonderful resource, here, in my opinion.

I would strongly encourage your wife to seek a second opinion. As has been wisely pointed out by others above, different facilities may have different perspectives on what your wife's treatment should be and also may offer specific trials that are proprietary to that institution...

I am a volunteer patient advocate and am not a medical professional so please do not take my suggestions as medical advice..

If you are able to travel I would suggest asking your oncologist about-

Dr. Ann Partridge at Dana Farber Cancer Institute in Boston

Dr. Susan Domchek at Abramson Cancer Center in Philadelphia

Dr. Dawn Hershman at Columbia University NYC

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

If more extensive travel is an option I would suggest asking about-

Dr. Ana Maria Gonzalez Angulo at MD Anderson Cancer Center in Houston

Dr. Lisa Carey..UNC..Chapel Hill, NC

Dr. Hope Rugo..UCSF..San Francisco..

David, TNBC, unfortunately is not a one-size-fits-all disease at times and different perspectives may be useful.

Just in case you and/or your wife would like to talk I am sending you a PM with my contact information.

Please keep posting and I hope whatever treatment plan your wife decides upon is helpful..

good luck,

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
Back to Top
johnmc View Drop Down
Groupie
Groupie
Avatar

Joined: Jun 18 2010
Location: NJ
Status: Offline
Points: 47
Post Options Post Options   Thanks (0) Thanks(0)   Quote johnmc Quote  Post ReplyReply Direct Link To This Post Posted: Dec 23 2010 at 9:19pm
Hello Dave,
I've followed these boards for over a year but this is my first post. My wife, also TNBC, Dx'd stage 4 to mediastinal nodes 2/10.  First treated with carobplatin/gemzar - which is felt to be an active combo for TNBC. Her numbers kept rising, so she was switched to Avastin/ABraxane and had a complete response. She is now on avastin only, every other week. She has also been on metformin for  about 10 months. Her numbers are starting to creep up again, but are still in normal range but at this point we don't know if the Avastin is doing anything or not. The reason I am writing now is that I can identify with your angst. From following these boards, I can tell you that you will get much good advice here. Besides a husband of a stage4 TNBC patient, I am also a physician - not oncologist - with over 30 years experience and I can vouch for the excellent advice given by Steve, 123Donna and Mainsailset. Over and over I have read and been impressed with their excellent advice on many different matters. the "Inspire - advanced breast cancer" site is another good one.
To address one of your issues from my personal experience, we did get a second opinion and my wife tried to get into a PARP trial, but for several different reasons it didn't work out. We were left though with a basic understading of what drugs they would use and agreed with our oncologist with the carbo/gemzar as a good start. Ithink the most important thing is that you have an oncologist you can trust, with excellent credentials. As with any other specialty, I can assure you that good doctors can be found outside of the meccas and not all doctors/or treatment at a mecca need necessarily be excellent. One thing you can tap into at the meccas are studies, although these can also be found at other hospitals and cancer centers also. Here's the important thing I think I've learned about cancer over the last three years. Every patient is different and can respond differently to any given treatment. The problem is that the science is not at the point yet where it can differentiate which TNBC patient will respond to any given treatment with any degree of certainty. So I think it's very important you have an oncologist that has your wife's best interests at heart, who treats you both with interest and care, who doesn't mind questions, who keeps up to date with the latest advances in TNBC care and will point you in the right direction if he can't provide what you require. All things being equal - the more experience the better.  Also try and remember that 1) your wife is the patient - not you ( difficult, I admit) and 2) once you get an oncologist you can trust, then trust them to do what's right. I hope my two cents helps, from a husbands standpoint.
John
Back to Top
David3029 View Drop Down
Newbie
Newbie


Joined: Dec 22 2010
Location: New Haven
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote David3029 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2010 at 9:45pm
To All Who Have Taken the Time to Respond to My Post,
I explained to my wife that I had sought some help from the TNBC website. She said that she had heard of it but did not want to read any of the posts.
Her treatment begins tomorrow. We've been married for 30 years and have always respected each others decision. I will have to respect hers, at this time, and pray that it is the best one for her.
My deepest thanks again to all of you.
I will try to stay in touch.
David
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2010 at 10:51pm
David,

I respect your wife's wishes.  Please stay in touch and let us know how her treatment goes.

I believe you said your wife will be getting Carboplatin and Taxol.  My dear friend just finished the same treatment for her peritonneal cancer and they are very encouraged with the results.   Her tumor markers are very low, which her oncologist said was a good sign.  I hope your wife sees the same results.

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

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: Dec 27 2010 at 11:04pm
Dear David,

I second Donna's comments..

you both shall be in my prayers..

in your corner,

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
Back to Top
Momof2NJ View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 11 2010
Location: Northern NJ
Status: Offline
Points: 113
Post Options Post Options   Thanks (0) Thanks(0)   Quote Momof2NJ Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2010 at 7:45am
Dearest David,
 
We respect all decisions here at TNBC.  You'll get ALOT of opinions, but always in the end we respect each individual and the path they choose.  We pray alot too!
 
I do hope you will continue to visit her and post.  You are a caregiver and you are always welcome.  Here you can always get info, discuss side effects (which I hope are minimal for your wife), ask questions and get support YOU need.  The majority of us here have not only experienced cancer firsthand, but at some point in our lives we've also been caregivers or touched by cancer in other ways.
 
Do be sure you take care of YOU as well.
 
here for you,
mary ellen
2008 BRCA 1+ dx stg 1,gr 3 IDC triple neg. BM w/ recon. CT x 4. Prophy TAH 2007. Recurrence 9/13/10. 10/5/10 tumor excised. ACx4, Taxol x3, abraxane x 9. 38 rads. 7/11 NED!!!
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4952
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2010 at 9:19am
David,
   One of the best things about this Forum is that we support both the women who are diagnosed as well as their spouses and family members. If and when you feel the need to reach out and run something by us we will all be ready and willing to help out in any way that we can.
  
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
sue View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 13 2010
Location: NJ
Status: Offline
Points: 650
Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2010 at 12:01pm
We are always here for you no matter when.  Hoping to hear from you again if possible.  

Keeping you both in my thoughts and prayers and wishing you a peaceful New Year.

Take Care. 

Sue
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
Back to Top
zoomommy2 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 26 2009
Location: Denver, CO
Status: Offline
Points: 1356
Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2010 at 12:30pm
David,
As many have said above, we respect your wife's choices.  It is her life.  But she may change her mind along the way about reading posts here.  I never thought I'd want reconstruction, but 14 months later, I had it and am glad I changed my mind.  We are here to support you, regardless.  I pray her chemo goes smoothly today.  Best wishes for the future for both of you.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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.