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Stage IV long term survivor roll call?

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Category: TNBC Forums
Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=12912
Printed Date: Mar 28 2024 at 11:48am
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Topic: Stage IV long term survivor roll call?
Posted By: Cew 1
Subject: Stage IV long term survivor roll call?
Date Posted: Jul 16 2016 at 1:22am
Hi all, I'm a newbie this week with mets to the liver and bones. I went through the ringer with my stage 3 treatments in 2014-15 and now am back and will fight every day for the maximum possible time with my 6 year old. I am starting Xeloda and a phase 2 trial for keytruda at the end of the month. Good thoughts for us all and I'd love to hear from folks!



Replies:
Posted By: Fight@60
Date Posted: Jul 16 2016 at 2:46pm
It is great Clap that you have decided that you will stand strong and fight. That is what we all have to do to keep moving from one day to the next.  I am two years out from my initial diagnosis for TNBC and even at this point I am always mindful that this is a constant battle.

I am sorry to hear about your mets, but I pray that God will cover you with His love always.  If you don't mind, I would like to ask a question: Did you have any symptoms with the liver/bone mets?  I am having bone pain all over, with some very tender spots in the location of my ribs (front & back); and some pain on right front side.  Any info you can provide would be helpful.  I am not one to panic, but I always like to know what I am dealing with if possible.  Thanks!

Diag: 6/19/14: Stage II, Grade 3, 2.5 cm TNBC, 90% proliferation. Bilateral mastectomy 7/22/14 (no lymph node involvement), Cytoxan and Taxotere (6 treatments reduced to 50% after 3 txt).


Posted By: bashamk
Date Posted: Jul 20 2016 at 4:04pm
Boy am I hoping for some others to post here!
I'm back on the boards, and back in the game. Took me a long time to be able to post, I had a recurrence in December, took the docs until late February to figure out eactly what it was as I had no tumors and the nose biopsies were coming up inconclusive.
So right now, I'm on my 2nd chemo regimen Gemzar/carboplatin - and it's working! The first line chemo, Paclitaxel, didn't work, It actually spread to my skin when I was on my 1st chemo.

So, I'm 8 months into this diagnosis. Counts for something, right?
Kay

-------------
dx 6/25/09 age 45, IDC TNBC,
stage 1, grade 3, 1.5 cm
Lumpectomy, T/C x 4, 33 rads
Dx Dec 2015 Stage 4 metaplastic
Cell growth on nerves in shoulder to rt arm; mediastinal nodes; Bone; skin mets


Posted By: Cew 1
Date Posted: Jul 20 2016 at 4:16pm
Yay Kay!! Definitely counts! :)


Posted By: Cew 1
Date Posted: Jul 20 2016 at 4:18pm
Hi there fight - I had abnormal blood work which was the real tip off coupled with pain. Call you onco if you are nervous. You will be okay! Thanks so much for the good thoughts! Xo


Posted By: bashamk
Date Posted: Jul 20 2016 at 4:27pm
Fight,
I did have bone pain, but it was odd. It didn't hurt if I pressed on it, only if I ran my fingers across it, like when putting on lotion. They didn't pick it up until I had a ct scan for something unrelated.
Kay

-------------
dx 6/25/09 age 45, IDC TNBC,
stage 1, grade 3, 1.5 cm
Lumpectomy, T/C x 4, 33 rads
Dx Dec 2015 Stage 4 metaplastic
Cell growth on nerves in shoulder to rt arm; mediastinal nodes; Bone; skin mets


Posted By: Fight@60
Date Posted: Jul 27 2016 at 5:50pm
Thanks so much for encouraging words and for info.  I have made an appointment to get it checked out.


Posted By: romnessprite2
Date Posted: Jul 28 2016 at 1:58am
Hi. Keep posting here. I know there are some other people who post on other discussions that have had recurrence and beat it a second time. Look at some of the other discussions and you will find them. One of them is 123Donna. Search for her she is always so encouraging to all of us.

-------------
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+


Posted By: bottkota
Date Posted: Jul 29 2016 at 12:53pm
I have been dealing with stage 4 triple negative breast cancer since November 2009. I am currently on a PARP inhibitor veliparib since April 2014 and stable. My disease is in my sternum and liver. Each day is a gifl, I fight for another day with my 4 kids. There are several of us who are long term survivors.

Cathi

-------------
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)


Posted By: romnessprite2
Date Posted: Jul 29 2016 at 2:11pm
Thank you cathi. You are so right Each Day Is A Gift! I just fpund out yesterday I might have that rare form og tnbc that effects your skin. It appeared ner the scar from surgery. They are trying antibiotic first. He said tbey will biosy it if the antibiotic doesnt work by next week.

-------------
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+


Posted By: Cew 1
Date Posted: Jul 29 2016 at 2:31pm
Thanks all, update for my mets sisters who the question is targeted to - my original tnbc morphed to estrogen positive luminal B at biopsy for metastasis. Hope for awesome clinical trials and fantastic results for my tnbc sisters.


Posted By: romnessprite2
Date Posted: Jul 29 2016 at 2:42pm
Hi cew. So is Estrogen positive easier to treat than tnbc? Im sorry its back but it sounds like you are a fighter. So keep up the fight and let us know how you are doing.
Ginie

-------------
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+


Posted By: Katdoll
Date Posted: Aug 02 2016 at 7:22pm
It's my understanding there are more treatment options for Estrogen positive bc. There are drugs like tamoxifen that can block estrogen reception and thus halt or slow the growth of estrogen positive tumors that "feed" on estrogen. It's my understanding there is no "targeted" drug like that for TNBC - that there's just chemotherapy. But chemotherapy can STILL be highly effective for TNBC.

-------------
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).


Posted By: romnessprite2
Date Posted: Aug 03 2016 at 1:25am
Well Im even more afraid now that this "infection" might be skin mets. The Keflex antibiotic hasnt worked at all. I have more red patches on the skin now. They are going to do a minor surgery on Thursday and repair the scar that opened up on the right breast, try to clean it out and sew it shut. The breast is very swollen. He said if this doesnt work he has to take the implant out. I really dont want him to do that because it means more surgery later. Im only 2 months out from the end of radiation. They said they are supposed to wait six months before they do more surgery.
I have no fever and my white counts are low normal. So if this is an infection my body is not fighting it very well. Its like my body doesnt know I have an infection. Wierd.
Im glad the skin is completely numb there. The skin saving mastectomy I had done causes the nerves to be cut but not the blood vessels. Its very strange to see my skin and not be able to feel it. I can feel the pectoral muscle under the skin especially when i reach to far or try to lift stuff at an awkward angle.
Anyway I hope this surgery will clear up the infection.

-------------
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+


Posted By: Sea dancer
Date Posted: Sep 28 2016 at 12:23am
If you haven't by now, please get checked for IBC, inflammatory breast cancer. It is a clinical as opposed to pathological diagnosis. My TNBC recurred as Stage IV and as IBC this May, 10 months after the end of   cut/poison/burn treatments. Gemzar did nothing...it spread until we added Abraxane. Then it vanished and PT/CT scan 3 months ago showed no hot spots and only tiny traces of mets! Next PET is Oct 10, wish me luck. So don't get scared, get on the doctors case about some proper follow up! Hugs!

-------------
TNBC Dx12/14
Left Mast, 23 lymphs 12/14
Chemo cocktails through 6/15
Radiation 5 wks
Recurrance in skin, right lymphs, poss lung 4/2016


Posted By: Tonya98
Date Posted: Sep 28 2016 at 12:18pm
Hi, I've been stage 4 since 2/2008. Skin and chest wall. My son was six too at the time. He's now 15. I have been on several treatments but currently I am stable and off treatment. There is hope. Keep fighting!

Tonya


-------------
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016


Posted By: Rsprite3
Date Posted: Sep 28 2016 at 1:50pm
Thank you sea dancer and tanya. I was afraid it was IBC. It turned out to be a side effect of Radiation. Described as similar to varicose veins in the tiny capilarys. Its gone now. Whew dodged a bullet. I will pray for you. Im so glad the mets have shrunk. Thank you Tanya. Its good to hear that recurrence isnt a death sentence. 8 years living with it Im sure has been no easy road. Glad you have had that time with your son. Hugs to you both.

-------------
2cm cancer found 7/15/15.4 cycles ACT.12 cycles taxol.double mast.3/8/16.15 residual tumor found.12rads.xeloda in future.


Posted By: RosePenny
Date Posted: Sep 29 2016 at 2:00pm
Hi 
My original diagnosis was stage three in 2011. Chemo, radiation and surgery. It then spread to my lung in 2013. I had lung surgery, and have been showing ned ever since. No treatment, just ct scans every 6 months. My dearest wish is that everyone reaches ned or stable.  
hugs Rose


Posted By: Nankub
Date Posted: Oct 18 2016 at 10:59am
Thank you to all my stage 4 sisters for posting.
After alot of reading I felt like I was the only one at this point. Stage 4 was my first dia in March 2015 and no doc would take a knife to me.
My docs are shocked that I haven't been on chemo in a year. They told me that never happens with my kind of cancer. They did find a new met covering my adrenal gland but I'm sure radiation will kill it, I start this week.
I hope that will hold off more chemo, we all hope that don't we. Even tho it saved my life, I'm sure they developed that crap in hell...lol
So I'm 5 months from making it 2years and I'm hoping if I can make that, the charts show I have a good chance of making it to 10yrs.
I've been using a natural product called rick Simpson oil since I was diagnosed. Each time I ran out they found a new met (only twice ). It could be a coincidence but since it makes me feel better (pain and nausea/appetite, anxiety) I'm going to stay on it. I'm lucky to live in a state where it is legal. My family believes this is a good part of the reason I have already lived twice as long as expected, and I plan on living!! I made peace with this thing and now I'm just along for the ride.

Keep shining bright!!

-------------
Diagnosed 3/13/2015 stage 4, age50, BRCA1pos,triple neg both breasts+lymph nodes,Mets to bone/spine rib,lungs,brain.8 months chemo,cyber knife on brain in 2015,2016.4cm tumor on adrenal found 9/30/16


Posted By: Sara414
Date Posted: Jan 31 2017 at 1:16pm
Looking for updates? I have a met to paratracheal lymph node and currently on chemo. In Nov, tumor measured 10x15 and is now 8x12 after 2 rounds of chemo. Ct was actually done 24 hours after 2nd chemo so wondering if the 2nd round even had time to take effect....


Posted By: gordon15
Date Posted: Jan 31 2017 at 7:34pm
You said "10x15" ...do you mean millimeters? ,(10mililmeters is a centimeter)My wife's surgeon wanted an ultrasound after (2) chemos, to see if it was shrinking, the Oncologist said normally, they do it after 1/3 of the therapy, so it sounds like they are trying their best to monitor you, any reduction is a good thing, from what I was told... maybe some have additional comments....

Sorry! CORRECTION: 10 millimeters is a centimeter, it's about 3/8 inch


-------------
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


Posted By: Sara414
Date Posted: Jan 31 2017 at 9:09pm
Yes mm. I thought 10 mm equaled a cm but I am horrible at math. But the initial measurement and current measurement is tiny, correct?


Posted By: bashamk
Date Posted: Feb 01 2017 at 8:00am
Sara, yes, tiny. You are right.
Did I read a prior post correctly? If you make it through 2 years, you have a good chance at 10 years?
Update on me...now Stable. What a lovely word. Not quite as good as NED, but I'll take it.
My scans show I'm down to only 3 measurable spots. All under 1/2 cm each. Pleural effusion gone. Still continuing chemo, but had to cut out carbo - landed in the hospital 2 weeks ago for a blood transfusion. On only gemcitabine right now, 2 weeks on, 1 week off. Neupogen shots are kicking my butt, hope to come off those eventually, since we got rid of carbo.
Wonder how well Gemcitabine works alone. Any experience with this?
Best wishes to all! We can do this.
Kay

-------------
dx 6/25/09 age 45, IDC TNBC,
stage 1, grade 3, 1.5 cm
Lumpectomy, T/C x 4, 33 rads
Dx Dec 2015 Stage 4 metaplastic
Cell growth on nerves in shoulder to rt arm; mediastinal nodes; Bone; skin mets


Posted By: Sara414
Date Posted: Feb 01 2017 at 8:16am
Where did yours spread too? And how big were they startling out? How big now? Is the one in medistinal gone? Have you ever been off chemo since diagnosed stage 4?


Posted By: Sara414
Date Posted: Feb 01 2017 at 8:17am
Also not sure about the 2 years thing.... tnbc is so fickle I have heard it can lay dormant for a day or years.


Posted By: bashamk
Date Posted: Feb 01 2017 at 7:49pm
You are right. I was 6+ years out from my first diagnosis, and here I am again :/. You were asking about where my tumors started this time? Actually, mine was really strange. It started growing around the nerve sheathing of the nerve that runs down my right shoulder into my right arm. At the same time, they discovered I had a dvt in my right subclavian vein. No actual tumors to measure, just a lot of 'cellular activity" on my right side. After 3 months it finally settled in to show up in the sternum, supraclavicular node, mediastinal node, various other nodes, a few ribs, a lung node, and the pleural effusion.
Yes, I've been on constant chemo since last April. But now down to only three small measurable spots. the supraclavicular node, the hilar lymph node and a lung nodule. I've been through a lot, have lymphadema pretty bad, and have learned more things than I care to admit. Just have to keep on going.
Kay

-------------
dx 6/25/09 age 45, IDC TNBC,
stage 1, grade 3, 1.5 cm
Lumpectomy, T/C x 4, 33 rads
Dx Dec 2015 Stage 4 metaplastic
Cell growth on nerves in shoulder to rt arm; mediastinal nodes; Bone; skin mets


Posted By: Sara414
Date Posted: Feb 01 2017 at 9:34pm
That is awesome? How big were they when first found? How often do you do chemo? Once there is no visible mets have they talked about what is next? Or life long chemo? They are being very aggressive with me which is good and bad. I only have one distant site which is paratracheal node so they think they can get me in remission but the biweekly AC is kicking my butt.. Heard of Ogliomestatic Disease? That is where you have 5 or less sites and there is some curable intent. Not sure how much research is out there on it though to support thesis.


Posted By: bashamk
Date Posted: Feb 02 2017 at 9:24am
I have not heard of Ogliomestatic disease. But there is a heck of a lot I haven't heard of. Sounds like you are in a good place, and will soon be able to say you are in remission. Here's to hoping that happens!!
My doc doesn't say much about the what-ifs, unless I really grill her. I understand it, she doesn't want to get my hopes up. So, as time goes on, and we get to a better place, I tell her my short term goal, she writes it in the notes and we both work towards it. She is amazing. Makes me to my own research, but I make her do some also. We work well together.
I'm on a 2-wk on, 1-wk off chemo schedule. I have my doubts about this new chemo regimen with only gemcitabine, but understand why we had to cut out carbo for now. I'm a little unsettled that paclitaxil, my first chemo,!didnt work at all. And, am wondering what the next option is. My doc said let's not put the cart before the horse. I think she truly believes that I need to give each step my full attention to give it a better chasnce to work.
Fingers crossed for both of us. But truly, I'm impressed with your improvement!
Kay

-------------
dx 6/25/09 age 45, IDC TNBC,
stage 1, grade 3, 1.5 cm
Lumpectomy, T/C x 4, 33 rads
Dx Dec 2015 Stage 4 metaplastic
Cell growth on nerves in shoulder to rt arm; mediastinal nodes; Bone; skin mets


Posted By: mac1715
Date Posted: Feb 02 2017 at 4:56pm
Hello Friends! I'm here to post some awesome news. I am celebrating my 10 year anniversary from diagnosis of TNBC!! Woo hoo!!!! I had no idea what this diagnosis of TNBC meant 10 yrs ago. After reading/researching I felt doomed. I was stage 1, grade 3, BRCA2 positive. Underwent a bilateral mastectomy and 8 rounds of chemo. I'm proof there is hope. I continue to keep you all in my prayers 🙏🏻😍👍🏻


Posted By: Sara414
Date Posted: Feb 03 2017 at 12:48am
Just FYI doctor says 10mm is is a cm. She said that is still tiny!


Posted By: Sara0414
Date Posted: Feb 24 2017 at 5:13am
Forgot to post after I got results of bronch of paratracheal lymph node. It showed no signs of malignancy! Not sure if the chemo killed it. Trauma from multiple surgeries, or if it was from an old infection as I had a sore throats at time of test being ran but either way it is dead. It was a small distant sight too so doctors are treating with curable intent. Had my last round of AC yesterday and in 3 weeks will do weekly toxyl/carbo then rads. I am pushing for Abraxine since I did taxatere before and reoccurred in 6 months so we will see. But did get some good news of HOPE!!!!


Posted By: jmitch_68
Date Posted: May 17 2017 at 6:41pm
I was originally diagnosed with TNBC on 12/29/16, stage 1C in left breast. Went through chemo, double mastectomy, tissue expanders, radiation and Xeloda. I also had a clean PET scan and brain MRI after my mastectomy in July of last year. Recently had my expander exchange surgery and when sternum, rib and back pain didn't improve my Dr ordered a CT scan. The results were several "spots" showed up in the lymph nodes in my chest, a couple of spots on my ribs and enlarged nodules in my lungs. Doc told me I was now stage 4 and would need chemo again. I had a brain MRI done yesterday and I'm having biopsies done this Friday. He wants to be sure it hasn't spread to my brain and also test (through biopsy) to see if it's the same type of cancer returning or a different type. I also have an appointment set up with Emory (well know cancer specialist here in Atlanta). I have had a lot of anxiety and shed a lot of tears since I got the news. I welcome any success stories from fellow survivors. :-)


Posted By: gordon15
Date Posted: May 19 2017 at 5:01pm
jmitch_68 :  I understand your anxiety. Emory , from what I know is very reputable...there are many new chemo/genetic/molecular therapies that may help, please  know my wife and I are thinking of you ...


-------------
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


Posted By: parrynd1
Date Posted: Jun 20 2017 at 1:15pm
Just wanted to let you all know you've brightened my day with your success and fighting spirit. Been sorting through the boards with worry on my mind about all the stuff in the future that could happen, but now I don't feel so down...no matter what happens I'm glad for the time I have and will always fight to have. Hope you all are doing well and kicking butt out there!

-------------
Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin


Posted By: jmitch_68
Date Posted: Jun 21 2017 at 11:09am
I have an update since my last post. My brain MRI came back clear. Yay! I saw 3 different doctors at Emory and they were unable to offer me a trial. I was about to give up hope on finding a trial and just take the chemo treatments my regular onco had to offer, but I knew deep in my heart that's not what I needed. Then I truly believed God opened another door. I found out about another trial in Athens, GA. After a week of sending them all my records then going in for a consult and blood test, I got the call yesterday that I am a candidate for the trial! The next steps will be for me to finish my radiation treatments this week then I will be going through more tests and scans required for the trial. If all goes well I should start treatments in about 2 1/2 weeks. I will be treated with immunotherapy drugs, not chemo! So happy about this. 😃 I have an awesome support group and prayer warriors!


Posted By: gordon15
Date Posted: Jun 25 2017 at 5:31pm
I'm glad to hear your news! I have read Emory is good. My wife has a doctor at UCSanDiego/Moores where they will make clinical trials available if she has a recurrence, using molecular-genetic testing. Would be good  to hear how you proceed from here. 


-------------
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


Posted By: JST
Date Posted: Jul 17 2017 at 7:06pm


Hi,

In 2011 I had a mastectomy, radiation and chemotherapy, stage 4. One year later, in 2012 it metastasized to spine and neck and my oncologist said that they treated me with the "big guns", could do no more and said I should get my affairs in order.

The next day, two separate people gave me the name of Dr. Ben Chue in Seattle, WA and he said he had one TN patient that was a 15 year survivor, He gave me hope and I started treatment in 2012. Six months later he had stopped the cancer and in 2014 my treatments where over. It is 5 years later and I just had another clear scan.

Dr. Chue uses the standard chemotherapy agents for each type of cancer. He uses metronomic chemotherapy with a goal to increase dose density and intensity while decreasing the risk of adverse effects to the chemotherapy.

Dr. Chue also prefers sequential chemotherapy e.g. switching treatment regimens before obvious disease progression. The standard method is to continue treatment until the disease is shown to progress, indicating resistance to the chemotherapy. By switching, the goal is to continually treat the cancer while decreasing the risk of developing disease resistance, as well as accumulated chemotoxicity, so a single regimen. 

He also boosts your immune system to get it going again. He has patients flying from Florida to Hawaii to be treated.


Here are the chemotherapy agents I received at Lifespring:

paclitaxel, carboplatin, and Leucovorin/5-FU

Abraxane, Doxil, Leucovorin/5-FU (switched to cisplatin)

Abraxane, gemcitabine

Halaven, cisplatin

Vinorelbine, cisplatin

Dr. Chue is very open to discussing his treatment, so I have included his contact info:

Dr.Ben Chue
Lifespring Cancer Treatment Center
2825 Eastlake Ave E Suite 200
Seattle, Washington 98102
Phone: (206) 686-1266
Fax: (206) 686-1268 

I was given hope and life by Dr. Chue and call him my miracle.


Posted By: gordon15
Date Posted: Jul 18 2017 at 5:36pm
Thank you for posting your information!


-------------
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


Posted By: Cbardar
Date Posted: Jul 23 2017 at 6:58am
Would love to get more information from you. Meeting with my doctor on Monday.


Posted By: Janicer590
Date Posted: Nov 30 2017 at 2:39pm
We are in Atlanta as well.  My sister, who is 51, was diag with triple negative BC  in May 2014 and is Braca 1 positive.  She had standard chemo, radiation, double mascectory, hystorectomy.  She was clear of cancer till reoccurrence with lung spots in December 2015.  Jan 2016 she started traveling to Sara Cannon in Nashville on Parp/Wee1 trial and till November 2017 all all mets in lung shrinking to almost nothing. We just found out 3 weeks ago that she had brain and spine mets. She spent 3 weeks in the hospital due to loosing strengh in her legs and completed 10 WBR and 14 to spine. She is home from the hospital as Novbember 14, and the hospital in house onc said nothing else they could do for her. He mentioned leptomeningeal disease, but she has never actually been tested for this. Only MRI of the spine. They said the only option for her was to have chemo thru port in head straight to spine, but it would make her very sick and has not proven to prolong survival rates. My sister is not having any symptoms other than weakness in legs (cant walk) and lost sensation of kidneys and bowels. She feels great, no pain, eating well.

We would like to get her in to see a neuro-oncologist and heard that Dr Erin Dunbar at Piedmant was Xcellent.  Who did you see at Emory and how are you doing.

janice




Posted By: Calinative65
Date Posted: Dec 04 2017 at 1:56pm
Congrats on 10 years!!!!! I am also 10 years out and last week a tiny lump thought to be scar tissue or fat tumor from implant ended up being TNBC tumor. About 1 cm in same place as first tumor. First dx I was stage 1...did double mastectomy and 8 rounds of chemo. I thought I was home free....what the heck? So need some encouraging words!!!!


Posted By: Cbardar
Date Posted: Dec 04 2017 at 2:56pm
I completely understand same thing happen to me. I not 10 years out just 1 yr.
This time I am Hr2 + now have to go through chemo again radiation this time and Herceptin and Perjeta till Sept. It sucks so I know how you feel. I am glad they caught it early



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