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Newly diagnosed with stage 4- searching for optio

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Rocky View Drop Down
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    Posted: Feb 17 2017 at 10:43am
First we have to deal with the shock and the anger, not easy. ,!! then comes the parts where we have to hike up our big girls pants and looks for solutions.

I started all this with 1 tumor less than 1 cm. Found it early but It was a nasty one. Did AC&T , double Mascectomy and was starting radiation with a Xeloda "kick" when we found the mets.
I can't believe I couldn't even get thru std of care.   Chemo has not seemed the answer for, I think I need to try something different, hoping for immunotherapy but those Trials also seem limited.   I am not brc1+ , starting to feel like a lost sub type. I ave great contacts at mass general and Dana farmer in Boston, they are looking for me, but sometimes it seems like the applicable ones are far away.   Anyone find a good website for searching?   Anyone aware of ongoing efforts?

How about Steve? Are you out there, I have heard so many wonderful things about you, would love to be able to chat.
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 20 2017 at 4:37pm
I'm sorry for your despondence right now. I looked up your posts, and it seems your tumor grew during chemo(?) My wife had (hopefully) a metaplastic TNBC, is it possible you did? Just throwing that out there, the metaplastic TNBC is often chemo-resistant.

Where do you have metastasis?  My wife has a rare (less than 1% TNBC) she's stable right now but I could ask her to ask her oncologist/molecular doctors at UCSD if there are any new promising drugs, she won't be having another PET for around least 2 months though.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2017 at 8:41am
Rocky,

You can send Steve a private message.  Look him up on the Memberlist:  SagePatientAdvocates


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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Rocky View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocky Quote  Post ReplyReply Direct Link To This Post Posted: Feb 23 2017 at 4:00pm
First I want to Thank you Gordon and Donna for your consistent presence and encouragement, it really means a lot. My tumor did grow and spread to the lymphs during AC treatment. I Did surgery and persisted taking Taxol. Was just starting radiation when mets was found in lungs and liver.   The mets are small but widespread.

I've talked with some of the leading researchers at Dana Farber and Mass General.   I was really hoping to do some immunotherapy, but nothing available locally.   I am looking throughout the country now. The opinion of both oncs in Boston is a clinical trial that combines Cisplatin and AZD1775 a kinase inhibitor that is still quite new.   I am trying to get behind this treatment, but I admit I am down on chemo as it has not done very well by me and there is very little data that Is available for the AZD1775.

I am getting a biopsy and will have molecular profiling done at both DF and MGH. Maybe a new "hook" that they can grab will show up. I will ask about meta plastic disease.

I will also reach out to Steve thru private message.   This forum is so great, I hope I can find ways to give back to other members like you to have.

When they tell u Cisplatin ( and the others) have a response rate of about 20% it makes me wonder about going with some of the natural approaches. It will probably remain a wondering as I am afraid to try to attack this aggressive disease on my own .
I know a positive fighting attitude is key, and despite my note, I am going to fight this and still think I can beat it!
Thanks!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2017 at 1:04pm
My wife had the genetic/molecular testing done after she finished therapy, UCSD/Moores sent out tissue/blood to 3 labs, they came back with (1) strong mutation and said the drug used (it's already FDA) if recurrence. Her onco at Scripps La Jolla referred her, UCSD is very close-by. I do remember her onco said Keytruda working on melanoma but disappointing for lung cancer, I'm pretty sure he said that, since we are trying to keep abreast of treatments.
They really didn't have time to do genetic b/c of urgent need to attack her TNBCw/metaplastic asap w/ chemo, so no regrets there. It takes time as you know.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2017 at 9:25pm
Hi Rocky,
I am so sorry to hear this.  It sounds like you have an amazing attitude, and that, coupled with working with top oncologists at DF and MGH, will help you tremendously.  I'm sorry I don't know about that cisplatin trial.  I admit that immunotherapy sounds the most compelling to me, too.  I'm so surprised there aren't any good immunotherapy trials available in New England right now.  I thought I'd been hearing that they were seeing some fairly good results with immunotherapy for stage 4 TNBC (more so than for other types of breast cancer).
I wouldn't rule out chemotherapy helping you just because the other types didn't work well for you.  I've read about so many people who had one type of chemo work well but not another, etc.  So maybe cisplatin is the one for you!
Is the molecular profiling the same thing as the FoundationOne testing?  I will pray they find an actionable target for you.
Also, I think pursuing some of the natural approaches might make a lot of sense.  It doesn't have to be instead of chemo, it can be alongside chemo.  I do not see a naturopath oncologist myself right now, but if my cancer progresses, I think I would definitely seek one out to add to my care.  My own oncologist, who I adore, is completely dismissive of the impact of anything else regarding our cancers.  He doesn't even talk about the role of exercise, vitamin D, etc.  I can't even imagine if I tried to get him to talk about turmeric!  The eye-rolling would be hilarious.  But there seems to be a lot of support for many approaches....
Rocky, we are thinking of you! 
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocky Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2017 at 10:06am
Thanks Tulips,

I'm doing my best to pursue the naturopathic paths, exercise, green tea, turmeric, vit D, berries, good organic food all that.   It would be nice to have the traditional docs and naturopaths collaborate, but I don't see that happening for me either, queue the eye rolls, I am getting some encouraging feedback on the kinase inhibitor that I am trying. At one point it seemed like l was doing this one cause it happened to be the only one open. It's good to hear that there have been successes.   Best to all, Keep fighting!
6/16 stage 1. 4xAC, 9/16, stage 2 , 2 lymphs. Double skin and nipple saving Mascectomy. 12x Taxol. 3/17, mets in lung and liver. Cisplatin &AZD1775 in process
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Hi All,
 
I just recurred.  UGH, found out for sure on 3/3/17, ironic right?
 
Anyway, I was able to get into the Keytruda immunotherapy + chemo trial.  I would highly recommend it, if you haven't already tried.  I mean I am willing to try anything to prolong my time with my family.  Blessings and Grace to you all!
 
Steph
DX on 1/27/15, Stage 3 TNBC, A/C every 2 weeks for 8 weeks, Taxol/Carbo every week for 12 weeks, Carbo every 3rd

Local lymphnode recurrence 3/3/17; Keytruda Trial 3/29/17
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2017 at 8:44pm
Steph,

I'm so sorry you received the news none of us want to hear.  Where did they find your recurrence?  Were you having symptoms?  So glad you got into the Keytruda trial.  What chemo will you be getting with the immunotherapy?

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 Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 8:22am
Oh no, Steph, I am so sorry to hear about your recurrence!  But I am really hopeful that your immunotherapy trial will knock it back.  I will be sending prayers.
And Rocky, I'm still thinking about you and hope you are happy with your treatment.
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote StephandBrandon Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 4:29pm
Thanks ladies! 
 
It came as a pretty hard blow.  I think I am still in shock.  I mean, how do you come to grips with dying young???  I am 39 years old, turning 40 in December.  UGH!
 
I am getting Keytruda (hopefully) + Gezmar and Carboplatin
 
I found it because I had (what I thought) was a compressed nerve in my arm.  I was getting nerve pain down my arm (like I was hitting my funny bone over and over).  Then I started losing feeling in my fourth and pinky fingers.  Went to regular doc, she said advil and stretching.   About three weeks later, I just knew there was something wrong.  So called the oncologist, got 3 MRI's right away and then got the news.
 
If you feel something, don't let it go!  If you know something is wrong, you keep pushing.  Because I pushed so hard, there is no spread to any organs, just nearby (local) lymphnodes. 
 
Hope that helps!!
 
Steph
DX on 1/27/15, Stage 3 TNBC, A/C every 2 weeks for 8 weeks, Taxol/Carbo every week for 12 weeks, Carbo every 3rd

Local lymphnode recurrence 3/3/17; Keytruda Trial 3/29/17
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 04 2017 at 6:25pm
Steph,

Did they diagnose the recurrence as stage 3 or stage 4?  You said local lymph nodes so it could still be stoppable.  Think positive thoughts!  Hope you have a good response to the Carbo/Gemzar like I did.  You are right, if something doesn't feel right, keep pushing and demanding tests.  Keep us posted.

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 atlhoosier Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2017 at 1:59pm
Can you provide info on that trial? I just found out that I have 1 lung nodule, and a PET that I had done last week shows a spot on my sacrum.  They haven't been able to figure out if it's mets, but now that there is the spot on my sacrum, I assume that is the case.  This is starting to get to me.  :(  Thanks!
DX Jan 2014, 37yo
TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins

2017 - Mets to lung (single nodule) & sacrum
1st line(current): clinical study w/ taxol & reparixin (may be placebo)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HrseLvr62 Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2017 at 10:13pm
Ask your doc to check your tumors for androgen receptors. If positive for AR, there are hormonal treatments. I am on Casodex - not free from side effects, but better than any kind of chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sheliahm Quote  Post ReplyReply Direct Link To This Post Posted: May 23 2017 at 10:02am
Hello everyone. Just wanted to chime in here. Im tn and brca+. Just had a recurrence to the skin and superclavicar nodes right before I started radiation. I'm considered stage 3 regional recurrence so my onc decided to start the radiation and low dose cisplatin concurrently. Side effects are tolerable and the nodules on my breast seems to be responding. Im almost done with this round of treatment and she may put me on carboplatin next. Has anyone had experience with carboplatin? I know this isn't going away and being on chemo for the rest of my life does not sound appealing but I'm trying to fight this. Where can I get more info about immunotherapy?

Edited by Sheliahm - May 23 2017 at 10:07am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 23 2017 at 10:50pm
Sheilahm,

I had Carboplatin with Gemzar for my recurrence.  I tolerated it very well and was able to work during treatment.  Fatigue was my biggest complaint plus elevated liver enzymes.  I'm not sure if it was the chemo combo or the trial drug that caused the liver enzymes to spike.
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 Luluroe Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2017 at 3:59am
Hi Steph,
How's your treatment going?

I just noticed we had similar symptoms of mets. But I'm much older. I was first diagnosed stage 3 bc 20 years ago, when I was 42. The cancer cell was hormone positive then. I had bilateral mastectomy followed with 6 courses of chemo. Treatment finished in 1997 and I had a good 20 years cancer free.

Earlier last year, I started having tight neck and shooting pain in my left arm. And then came the numb fingers, a very swelling arm and excruciating back pain. It took me a long time to go to my cancer prevention team doctor to figure this out. Because for a long while, I wanted to believe it was frozen shoulder or a lymphedema.
Dr diagnosed it as stage 4 tn bc. We did biopsy twice to make sure it is tn because it doesn't happen often with bc mets from positive to negative.

I had a short session of radiation (11 days). Tumor got very angry and grew bigger. I had Taxol for 4 months and it was like magic, my tumor melted mostly.
But then magic disappeared last month (5th month on Taxol). A new tumor popped up on almost the same spot and it is growing fast. I just had a new scan today and will start on eribulin chemo tomorrow.
I don't see anyone in the thread taking eribulin. I wonder why? Or perhaps I just missed it?

My side effect from Taxol was tolerable. The biggest problem was to keep my blood count. I had 3 transfusion in 5 months. I also developed a blood clot from swelling. So I have to do a daily self injection lovenox.

But still it was a big shock when I noticed this new bump below my collar bone, near the arm pit. I felt my heart sank. But life goes on. Every day is a new start.
I started taking leisure singing lessons and picked up my daily stretch routine recently. And I pray that all us cancer patients have happy days with full head of hair so we can continue doing good work and bring laughters and encouraging advises to others.
Luluroe
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2017 at 8:12am
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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