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Navelbine didnt work. PLEASE HELP!!!!

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ameg View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ameg Quote  Post ReplyReply Direct Link To This Post Topic: Navelbine didnt work. PLEASE HELP!!!!
    Posted: Sep 28 2013 at 11:18pm
I feel that I'm lost, confused, angry, worried, scared.......CryAngryShocked....

I was diagnosed stage IV since 2009. Iv been on 10 chemo drugs and 2 trials. At this point I have cancer in my lungs, liver, lymph nodes and one rib. Navelbine was my last treatment. I NEED A BREAK. Obviously the chemo is not working. I do have a few more drugs that I didn't use yet but I'm TIRED FROM CHEMO. It looks like these cancer cells are so strong by now that I'm afraid nothing will work.

What shell I do? What else is there? Can I take 2 months break? For the last 7 months I was on 2 different type of chemo that didn't work any way. My cancer kept progressing while I was on this 2 chemo. Please help!!!

mg
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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: Sep 29 2013 at 12:44am
ameg,

I am so sorry this has continued to progress. I am very sorry I have no answers for you. I just want to let you  know you are in my thoughts.
I am sure someone will be along shortly to maybe offer up some ideas foy you. 
Breathe just breathe.
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 denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2013 at 1:11am
Ameg,
I am to angry, lost, confused, worried that this is happening to you yes it is very scarey it is sicking.
The one thought that entered my mind ia it possible if you can p.m. Steve he is such a wealth of information and I am sure he will be a tremendis help for you.
Please try to rest just for a little while your mind is in over load right now.
Hugs,
Denise 
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2013 at 10:48am
Ameg, try a pm to dmwolf as well. She works in research and is top notch in her knowledge.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 11:01am
Dear mg,

Your post breaks my heart. I am very sorry that another drug has failed you.

It seems that you have what the oncologists call 'chemo-resistant' disease and that is a major problem as you know. 

I am going to send you my contact information and we can talk but I do not know if I can be of much help.I am not a medical professional and cannot give you medical advice and will not but I might be able to suggest some Breast Medical Oncologists who might see you and it is not clear whether they can help either but at least you will be getting the perspective of some experts in TNBC. 

One thing that I would suggest is that you make sure you have a good palliative care team in place. Palliative care generally just means hospice to people, either home hospice or in-patient hospice. That is not what I am talking about. I am referring to palliative care that means Supportive Care services that are for patients who are still actively fighting the disease. The supportive care folks can help you with physical problems such as pain management, breathing issues, GI etc. They can also help you manage all the emotions that you have described -which are all valid and understandable. But you might benefit from some professional help in dealing with the overwhelming anxiety/angst.

warmly,

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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 6:03pm
Mg, I'm so sorry you are facing continuing progression.  It sucks so much.  You probably don't want to think about it, but would you be willing to list all the drug/combos you've been on and roughly how long before you progressed on each?  That way we can get an idea of what worked in the past, what didn't, and what you have and haven't tried so far.     Then we can help brainstorm with you on possible treatment options.   

Hugs,
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 helpfulhubby Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 6:36pm
I would see if you can get into this trial featuring Nivolumab. I have seen it work first hand on a relative with stage 4 lung cancer. It helps your immune system get into gear to attack the cancer. In difficult cancers such as TNBC I think the immune system could be a key. My heart felt wishes for the best for you.

http://clinicaltrials.gov/ct2/show/NCT01928394
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ameg Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 9:00pm
Thank you all for your kind words.

This is the list of chemo drug that I was on:


AC/T for TNBC (2005)


6 rounds of Taxetere+Herceptin  line (2010) (The doctor thought that the 2nd biopsy was Her2+)


Herceptin for 1 year (It didn't work. After retesting the biopsy by a different lab we found out that I was TN all along). I feel like I wasted a year and this was when the cancer started to metastasize. Doctors are telling me that it didn't matter. I'm not so sure a bout that.


Pazonopib (clinical trial) 4 months


Doxil 3 rounds once a month


Gemzar 6 months


Xeloda and Ixempra (this is the only chemo that responded for about 6 months)


NKTR- 201 clinical trial. Didn't work


Navlbein- 3 1/2 rounds. Didn't work at all.


______________________


I know there are a few more drugs that I didn't use, but for now I need a break from chemo. I am looking for a trial that is more targeted.


I am going to continue to fight this as much as I can. I am going to find ways to get help how to deal with the emotional feelings and the rest of it its up to G-od. Maybe something will come up, who knows? It is not going to be easy but I know I have to be optimistic as much as I can. My whole view of what life is about starting to change. I don't know if its good or bad. ConfusedConfusedConfusedConfusedConfused


mg









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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2013 at 10:15pm
I have a few thoughts:

1.  you haven't tried a platinum drug yet
2.  targeted therapy -- best to find a trial that combines two targeted drugs or one targeted drug and a chemo drug.  The reason being that inevitably, there is escape if treating with just one targeted drug. Beth was on a PI3K inhibitor + paclitaxel and had a good response but had to discontinue because of side effects.
3.  immunotherapy -- anti-PD1/PDL1 or anti-CTLA4.  I know of a couple of mTNBC members who have looked into the anti-PD1 trial.  There are also cell based treatment where your T cells or dendritic cells are removed and genetically altered ex vivo to recognize tumor cells before being re-introduced.  I am not sure there are such trials for BC.  You'll have to look in clinicaltrials.gov.
4.  I recently came across a review that discussed reintroduction (drug rechallenge) after a drug holiday for drugs that showed an initial response (http://www.nature.com/nrclinonc/journal/v10/n10/full/nrclinonc.2013.158.html).  You might want to ask your oncologist about that strategy.

I'm not a practicing oncologist and these are just my personal perspectives.

Good luck going forward.
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: Sep 30 2013 at 10:29pm
Couldn't edit above post.

Addendum:
5.  If possible, find a trial that will use tumor genomics to identify targets- better chance of finding something that will actually work.
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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 12:58pm
Lee's advice is good.  To that I might add being tested for androgen receptor and going into the anti-androgen trials if you test positive (10% chance).

Also, personally, I think if you need a break from chemo you should just take one.  Go on vacation somewhere beautiful with your family.  Enjoy life.  Rebuild your vitality.   Your body and spirit have been so battered by ongoing treatment and worry about cancer.    That is what your note most strongly communicates, so how about if you just honor your need for self-care right now, and take a real break?  Where would you most like to go?   How about Bali?   Galapagos?  Hawaii?  Barbados?   Spend some time snorkeling, surrounded by fish and coral.   

Cancer treatments will wait for you.   I guess the risk is that your cancer will progress while on 'holiday', but isn't it progressing anyways?    You might as well enjoy yourself.   On average, these treatments offer survival benefits of weeks or if lucky months.   Of course there are rare 'super-responders' but the odds are against any particular person being one of them.  I don't know how I would feel in your shoes, but I suspect I'd be willing to trade a few extra weeks of life feeling poisoned for a gorgeous vacation swimming in the ocean.      How do you feel about this issue?   Quantity of life (maybe) vs. quality of life (definite).    It sucks that we have to choose, that at every progression one needs to take a new gamble.  Try another toxic regimen that might or not work, or skip it, have a great time, and progress possibly faster than on treatment.  What a choice.

Anyways, my heart is with you.

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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 3:43pm
I agree 100% with Denise's thoughts on taking a chemo holiday.  Who knows, when your body gets a rest, your immune system could even start kicking butt!  One other thought I have is to do all the necessary work now to decide on the next course of action, then take a well deserved vacation, and deal with treatment when you come back.
It's a really tough place to be at, and after so many rounds of chemo, it's hard to be upbeat. I wish you the very best, whatever course of action you decide to follow.
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 ctlindah Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 3:56pm
Dear MG,
 
I'm so sorry for what you're going through!  I think you're at the right place here - there are so many wonderful, caring and knowledgeable people - Hopefully someone will have the answer that's right for your situation.
 
Hugs,
Linda
 
DX IDC TNBC 10/12 age 48, Stage 1, Grade 3, 1.5cm
Lumpectomy DD AC & Taxol BRCA- rads X30 finished 5/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ameg Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 7:58pm

I'm looking at one clinical trial that is not chemo. Its a phase 2 trial. Its not specifically for TN but they had good results with metastasized solid tumors. It calls PCI-613. I happen to know the resecher who came up with this drug. He wants me to try it because at this point he feels I have nothing to loose and this will give me a break from chemo. I'm sure it has own side effects but not like chemo.

At the same time I'm taking some time off from my job, so I can take care of myself.

Thank you all for your great advice and being there for me. 

mg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 8:47pm
ameg,

Is it this clinical trial?


This Phase II study is conducted to assess the safety and efficacy of CPI-613 in patients with advanced and/or metastatic solid tumors for whom there there is no available therapy to provide clinical benefit or for those who have refused further standard therapy. The primary outcome measure is Overall Survival (OS). The secondary outcome measures are: Response Rate (RR), Progression-Free Survival (PFS), and safety.


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 ameg Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 10:09pm
123Donna,

Yes this is the trial.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 11:24pm
Wishing you the best, ameg, with this Phase 2 test if you decide to do it.
Wishing you peace.  Please keep us updated.
Bear hug to you (((ameg))) ...
Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2013 at 11:30pm
Meant to say Phase 2 Trial...not test.
Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
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Post Options Post Options   Thanks (0) Thanks(0)   Quote helpfulhubby Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2013 at 12:36am
Ameg The Trial I posted above looks like it has an October 3013 start date. It features Nivolumab From BMS. It is immunotherapy and I was very happy to see it being tried now for TNBC. Nivolumab has been very tolerable. Check out this article.

http://articles.chicagotribune.com/2013-05-31/lifestyle/sns-rt-us-cancer-immunotherapybre94u05p-20130530_1_lung-cancer-cancer-death-mpdl3280a
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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: Oct 02 2013 at 1:52am
Ameg,

Just posted some information on a Program to be held on this Saturday Oct 5, 2013 in the
Boston area at the DFCI, a NCCN Cancer Center on thread:
http://forum.tnbcfoundation.org/10-05-13-boston-area-mets-breast-cancer-forum_topic10339_page1.html

Not sure if travel wise this would even be a consideration.....or how close you are to the
Boston/New England area.
Thought I would post here on your thread and you can consider if a possibility.
Was thinking anyone who attends would get the opportunity to hear experts and ask
questions.
Last year, there was a Webcast of the 2012 program.   So, if one is not able to attend, one might
check to see if there will be a 2013 Webcast of the Program made available (and get the same
info as if one had attended in person.)

Also, helpful hubby mentioned above about immunotherapy with Nivolumab from BMS.
NOTE: THINK Sara Tolaney, MD (who is on the DFCI program) is involved with one of the
             immunotherapy clinical trials at DFCI involving the immunotherapy. (Lee21 and others
             have posted info on anti-PD1/PDL1 or anti-CTLA4 trials on other forums.)
              Not sure if you are interested with immunotherapy and the anti-PD1/PDL1 options.
Believe DFCI has a clinical trial with the immunotherapy MSK 3475
http://clinicaltrials.gov/ct2/show/NCT01848834?term=3475&rank=6

It was good to read that "At the same time I'm taking some time off from my job, so I can take care of myself."   Wise, wise woman.


With caring and good thoughts,
Grateful for today..............Judy

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