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Stage IV long term survivor roll call?

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Cew 1 View Drop Down
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    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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fight@60 Quote  Post ReplyReply Direct Link To This Post 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).


Edited by Fight@60 - Jul 30 2016 at 12:15pm
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bashamk View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bashamk Quote  Post ReplyReply Direct Link To This Post 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
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Cew 1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cew 1 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2016 at 4:16pm
Yay Kay!! Definitely counts! :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cew 1 Quote  Post ReplyReply Direct Link To This Post 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

Edited by Cew 1 - Jul 20 2016 at 4:19pm
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bashamk View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bashamk Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Fight@60 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post 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+
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Post Options Post Options   Thanks (1) Thanks(1)   Quote bottkota Quote  Post ReplyReply Direct Link To This Post 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)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post 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+
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Cew 1 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post 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+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post 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).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post 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+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sea dancer Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Rsprite3 Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote RosePenny Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nankub Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post 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....
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