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Stage IV long term survivor roll call?

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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: 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


Edited by gordon15 - Feb 03 2017 at 5:55pm
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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Sara414 View Drop Down
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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 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?
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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: 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post 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?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post 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.
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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: 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post 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.
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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: 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

Edited by bashamk - Feb 02 2017 at 10:28am
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 (1) Thanks(1)   Quote mac1715 Quote  Post ReplyReply Direct Link To This Post 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 🙏🏻😍👍🏻

Edited by mac1715 - Feb 03 2017 at 9:14pm
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Sara414 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2017 at 12:48am
Just FYI doctor says 10mm is is a cm. She said that is still tiny!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sara0414 Quote  Post ReplyReply Direct Link To This Post 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!!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jmitch_68 Quote  Post ReplyReply Direct Link To This Post 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. :-)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post 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 TN IDC 9/016 Age 28, Stage 3c, Grade 3, 4.5cm, .7cm, 1/5 Nodes, BRCA -, KI-67 >90%, 6/6 I-Spy 2, 4/4 rounds DD A/C, Lumpectomy w/reduction, 3 nodes removed, weekly Taxol/Carb1/12
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Post Options Post Options   Thanks (1) Thanks(1)   Quote jmitch_68 Quote  Post ReplyReply Direct Link To This Post 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!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JST Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cbardar Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2017 at 6:58am
Would love to get more information from you. Meeting with my doctor on Monday.
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