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Lawsonval View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2019 at 12:23pm
Lumpectomy surgery is completed, 7 mm tumor, clear margins, no cancer in sentinel lymph nodes. So T1aN0, but aggressive, 8/9 . BUT when the doctor goes through the decision tree for TNBC, it says Consider Chemo, its in the grey area, its in the middle between NO Chemo and Yes Chemo.  I can't get in to see the medical oncologist for a month. Asked for second opinion, and will get a referral.  But how do people make this decision when you end up in the middle like this?
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2019 at 12:33pm
Mine was the same... 6mm - and my uncle is a radiology oncologist - he said don't mess with it and do the chemo.  That was his guidance for me.  I was glad it was 6mm instead of 5.  NCCN says over 5 strongly consider chemo.  So, I am two years through this and lump/chemo/rad and reconstruction is complete.  And, I am feeling great!  I hope that helps you.
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2019 at 7:10pm
Basically, after years of watching women post similar results, I've learned that the answer is 'go for it', don't hold back on treatment but stay aggressive. If you don't go the chemo route and you have a recurrence it will be that much harder to fight.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AnneB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2019 at 12:18am
Thank you for posting this.  <3
I'm curious - what made you decide on a bilateral mastectomy vs a lumpectomy?
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Lawsonval View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2019 at 5:23pm
The nurse coordinator managed to get me moved up, so I now have visited radiation and medical oncologists. Radiation seems pretty clear.  Chemo still sounds pretty intense. Doc is recommending 4 doses, 3 weeks apart, of Cytoxan and Taxotere. Also found out that these are paired with steroids, which can raise your blood sugar, andI am a borderline type 2 diabetic. After seeing the statistics, where in 10 years, 15% will metastasize and die without chemo, while 10% still will with chemo, I really am struggling with this decision. Any other thoughts from the group?  Thanks for the help.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote fkooei Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2019 at 5:38pm
You said your tumor was small so I think you mean 1.0 cm?  Are you getting treated in Seattle?  There are a couple of great cancer centers in Seattle.  Have they tested you for genetic mutations?  If not, ask them to give you a test. 
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Lawsonval View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2019 at 10:00pm
Tumor was 7 mm, no node involvement, being treated in Bellingham, 100 miles north of Seattle, negative on genetic mutation.
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Lawsonval View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2019 at 10:01pm
taking TC, one last dose this week, then on to rads.  Chemo has not been fun, but close to the end
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Post Options Post Options   Thanks (0) Thanks(0)   Quote deniset Quote  Post ReplyReply Direct Link To This Post Posted: Dec 18 2019 at 11:01am
you must b your own advocate. The nurses and receptionist who are in charge of appts and testing have no idea who they r speaking to and usually don’t care. It is imperative you keep following up. I was at msk which is a nightmare!  Find someone who cares and you can speak with and who will coordinate doctors and appointments. 
Tnbc is normally aggressive sooo starting some type of treatment is imperative. They wanted to do chemo first but there was a risk I would not respond thereby giving the cancer longer to grow. (S2 no)so I opted for mastectomy first😌 so I had time to decide what path to choose.


Edited by deniset - Dec 18 2019 at 11:02am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BlazeAnne Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2020 at 2:49am
greetings all,  i have been freaking out here in oklahoma!  This TNBC showed up on a mamogram.  It had been 2.5 years since my last mamogram, I had become distracted by my mothers death...grieving.  I finally get a mamo Oct. 25, 2019 and there she is!!  5 oclock in the right breast!  November 18 I had a spot mamogram and an ultrasound.  November 19 the  core needle biopsy With vaccum   Biopsy doc said, "plan on it being cancer."  There were calcifications in the mass 1.8 cm.  Three days later the doc called and said it was cancer and we need an MRI and decide which surgeon you want to see.  Wow!  I did not know what to think !  I am still very unsure about all this.  But sfter making two surgical appointments and being treated oddly. ( the first s scheduler told me the size of the tumor and that it was TNBC but needed to find the surgeon to make me an appointment and she could not locate him)  that seemed weird to me.  So December19, 2019 i reached out to a famed place in texas' satelite clinic were a patient failitator was very nice and helped me get an appointment with the only breast surgeon there and at my strong insistence, an appointment with the only oncologist there.  She then told me tha a nurse navigator would be taking over the direction of my care.  I waited to hear from this nurse and finally did,January 8, 2020, two business days before my appointment in Texas.  She did not know if she could get the needed testingscheduled  on such short notice....did not share with me what these tests would be and seemed as though she was reading a script. It took about 12 hours for all this to percolate through my brain.  Oh, I did go to my GP to review all this data on Jan 2 -this is the only time i have been face to face with a doctor after the biopsy md called me and told me that it was the size of a medium blueberry .  The GP said it looks like the best possible cancer to have if you are going to have cancer, good luck.  I am flying so blind!!  I called MD Anderson, Nellie B Connolly Breast Cancer Center and am begging to get in ASAP.  I will be talking to them in the morning.... meanwhile I am freaked out in Oklahoma.  Thanks for listening all you TNBC gals out there!  I am married to a 72 year old farmer, I am 64 with only a paternal aunt w BC double masectomy in about 1956 when she was about 50.  I have no relatives in this state.  Pretty much alone here.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2020 at 7:33am
BlazeAnne,

I'm so sorry you are dealing with this diagnosis and the run around all these doctors are giving you.  The GP who told you this is the best type of cancer to get, is completely mis-informed and uneducated on breast cancer.  Please get to a good cancer facility ASAP.  MD Anderson is one of the best.  We have a patient advocate in this group that may be able to help if you can't get the appointment quickly.

In the meantime, please read up as much as possible so you can ask all the right questions.  The most important thing right now is to get in with a breast surgeon or oncologist as soon as possible.



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 Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2020 at 7:48pm
Blaze Anne, have you considered UT Southwestern in Dallas? They’ve cured my TNbC twice now, I couldn’t be happier with my doctors and the facility. I’d be happy to help you get an appointment with both a surgical and medical oncologist there for an opinion. And you need to meet with a medical oncologist BEFORE you have surgery!!!! Very important so that you can make an informed decision. 
And Donna is right, whomever said it was the beat kind of cancer was either a liar or an idiot. You are doing the right thing seeking informed opinions from stellar cancer facilities! 
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2020 at 3:34pm
I am so sorry about your recent diagnosis. I was diagnosed this past Oct. with TNBC 7mm tumor, no lympth node involvement, no genetic mutation. I first had a lympectomy followed by chemo - which I'm currently  undergoing -followed by radiation.Please do not let the internet freak you out! I did the same thing after my diagnosis. Researched and googled everything I could which only sent me into panic mode. While I do believe in educating ourselves a lot of what you read on the internet has to be taken with a grain of salt. Everyone is different and not all TNBC is a death sentence, as the internet would sometimes have you believe. You caught it early and it doesn't appear to be in your lympth nodes and that's very positive. That all alone means you have a good prognosis. My best advice is find an oncologist you like and trust. Get a second or third opinion if that's what need to be comfortable in your decisions. What made me most comfortable was finding a doctor who had experience treating TNBC and gave me real facts and statistics. For example, what the disease-free survival rate is for my particular circumstance with and without treatment. Your oncologist should have access to that information that they can share with you. My doctor came in with statistics, charts, graphs all relative to my information and pathology report which gave me the ability to make t he best decision for myself regarding treatment options. I know it's a lot easier said than done by try not to scare yourself by looking at too much on the internet.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mathlady1960 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2020 at 3:11pm
Just starting on this new adventure - diagnosis received 9 days ago, surgery scheduled in a week for lumpectomy for 5mm tumor. 

Just starting to do my research, so I appreciate all of the first-hand knowledge here.

Can someone share about your experience with chemo? I am the primary wage-earner in our household and carry the medical insurance, so I'm concerned about being able to continue working (full-time high school teacher) while dealing with the side-effects.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2020 at 3:49pm
Hi Mathlady,

I was in your exact shoes in 2016. I worked straight through surgery, chemo, RADs and reconstructive surgery.  My tumor was small like yours.  I am on the other side of things and all is well.  You are at the very worst part.  Just know, it was very manageable for me and the work kept me sane.  Good luck to you.  Keep a positive mindset and come back to this board often.  It was a life saver for me 100%

Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2020 at 7:23pm
I was wearing those same shoes in 2017...I worked during it all.  You can do it.  Pace yourself...and understand rest when you can.  Yes, this site is very important.  Godspeed!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2020 at 7:30pm
Oh yes...work is very good!  Keeps you busy and your mind is occupied!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote FullTilt Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2020 at 5:23pm
There is a new immunotherapy that you can use along with conventional treatment that your oncologist is recommending. The results have been nothing short of amazing. 


CytoDyn Reports Continued Positive Clinical Data on its Phase 1b/2 mTNBC and Expanded Access Studies for MBC Ahead of Breakthrough Therapy Designation Decision From the FDA

VANCOUVER, Washington, Feb. 14, 2020 (GLOBE NEWSWIRE) -- CytoDyn Inc. (OTC.QB: CYDY), (“CytoDyn” or the “Company"), a late-stage biotechnology company developing leronlimab (PRO 140), a CCR5 antagonist with the potential for multiple therapeutic indications, announced today continued positive data for its mTNBC and MBC patients.

Metastatic triple-negative breast cancer (mTNBC), an aggressive histological subtype, has a poor prognosis. In addition, metastatic breast cancer (MBC) is breast cancer that has spread beyond the breast and lymph nodes to other organs in the body (typically the bones, liver, lungs, or brain). Both types of cancer pose significant challenges for patients due to their aggressiveness and limited treatment options. An integral part of CytoDyn’s mission and purpose is to provide effective therapeutic solutions to these patients. Results of the first five patients are as follows:

Patient #1: Enrolled in mTNBC Phase 1b/2 - Injected on 9/27/2019. CTC (circulating tumor cells) dropped to zero in two weeks on 10/11/2019. Total CTC and EMT (Epithelial Mesenchymal Transition in Tumor Metastasis) dropped to zero after about one month of treatment with leronlimab (once-a-week 350 mg dose). After approximately four months of treatment with leronlimab and Carboplatin, the patient had zero CTC+EMT. Furthermore, the patient’s CT scan indicated a 20% tumor shrinkage within the first few weeks of treatment with leronlimab.

Patient #2: Enrolled in single IND. Patient is MBC with HER2+ stage 4 metastasis to lung, liver, and brain. Patient’s radiologist cancelled 2nd round of treatment due to leronlimab’s effect on shrinking the largest tumor in the brain by 56% and other lesions being stable. Leronlimab has, and continues to be, the only treatment in place since the measurement of brain tumor shrinkage was initiated. Patient was permitted to obtain CTC+EMT test results. After 10 weeks of treatment with leronlimab, this patient’s CTC+EMT results were zero (results reported on 2/12/2020).

Patient #3: Enrolled on 1/3/2020. This patient’s CAML counts went down from 45 to 30. CTC+EMT are stable and there has been no change in the total number.

Patient #4: Enrolled on 1/7/2020. This patient’s total CTC+EMT dropped by 75% in the first two weeks of treatment with leronlimab.

Patient #5: Enrolled on 2/4/2020. This patient’s CTC+EMT have been recorded upon enrollment and the first results are expected on 2/25/2020.

In addition to the first five patients, enrollment and treatment updates in CytoDyn’s Phase 2 protocol basket trial under its cancer IND are as follows:

Patient #6: Injected on 2/8/2020 and the first results since enrollment are due by end of February.

Patient #7: Injected on 2/13/2020.

Patients #8, 9 and 10: Completed screening for enrollment.

“The patients enrolled in the mTNBC Phase 1b/2 trial continue to demonstrate meaningful results that support the hypothesis regarding leronlimab’s mechanism of action,” said Bruce Patterson, M.D., chief executive officer and founder of IncellDx, a diagnostic partner and an advisor to CytoDyn. “In the four patients (1 with MBC, 3 with TNBC) now with results from leronlimab therapy, patients #1-3 have zero CTCs and zero EMTs and Patient #4, who has been treated with leronlimab for 2 weeks showed a decrease of CTCs and EMTs from 8 to 2. New data from Patient #2 with Stage 4 MBC and who has been treated with 10 weekly doses of leronlimab showed zero CTCs and zero EMTs, in addition to the shrinkage or disappearance of some brain metastases as previously reported.”

Nader Pourhassan, Ph.D., president and chief executive officer of CytoDyn, added: “These findings are extremely promising in light of the success rate of other treatment options. Therapeutic options for patients suffering from breast cancer are highly limited and we look forward to continuing enrollment and exploring leronlimab’s potential to treat this devastating disease. Since our basket trial for all solid tumor cancers has been initiated, we are currently screening a prostate cancer patient, and if continued positive clinical results are forthcoming from this patient, we are hopeful that this will clear the path for CytoDyn to file for Breakthrough Therapy designation for all solid tumor cancers. Our mechanism of action is not only focused on the inhibition of metastasis of solid tumor cancers, but also targets the tumor itself through macrophages, angiogenesis and T-reg.”



Edited by FullTilt - Feb 14 2020 at 5:24pm
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James123 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2020 at 5:01pm
is this a NIH Approved Study
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Post Options Post Options   Thanks (0) Thanks(0)   Quote FullTilt Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2020 at 9:15am
When I go to NIH.gov and search the trial number NCT03838367 the trial with Leronlimab comes up. 


As far as I know this trial has not received a NIH grant. Here is the link to the trial at ClinicalTrials.gov:

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