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New to TNBC

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Forum Name: Welcome New Members
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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13544
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Topic: New to TNBC
Posted By: Lawsonval
Subject: New to TNBC
Date Posted: Jun 14 2019 at 1:27am
i just received the results of my biopsy, showing tnbc. Met with the surgeon who reviewed my results but he was less than transparent about the tnbc.  No sign of lymph node involvement, but that’s before surgery.  lumpectomy and sentinel lymph node removal are planned in a couple of weeks.  Should there be a major difference in treatment between other breastfeeding cancers and tnbc, if the tumor is small, 10 cm approx? I went online to read about tnbc, and scared myself, reading about increased recurrence etc.  Do any of you have guidance for the very beginning of treatment? 

I live about 100 miles from Seattle, 



Replies:
Posted By: 123Donna
Date Posted: Jun 14 2019 at 11:58am
Hi Lawsonval,

I know it's very scary and overwhelming to get this diagnosis, but you are not alone.  Lots of women in this group to help you out and share their experience.  Everything you read online can be scary.  The difference between TNBC and other breast cancers is they don't know what's driving TNBC in most cases.  So there's no targeted therapy like Tamoxifen or Herceptin.  We have surgery, chemo and radiation as the only treatment options.

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. 

https://www.color.com/learn/color-genes" rel="nofollow - https://www.color.com/learn/color-genes

https://testguide.labmed.uw.edu/public/view/BROCA" rel="nofollow - https://testguide.labmed.uw.edu/public/view/BROCA

https://www.nccn.org/patients/guidelines/breast-invasive/index.html" rel="nofollow - https://www.nccn.org/patients/guidelines/breast-invasive/index.html

For me the hardest part was the diagnosis and the time before surgery.  You have to make a lot of decisions in a short period of time and it's so stressful.  Once the surgery/treatment begins you feel more in control.  The anticipation of everything was the worst part for me.  Take care and keep us posted on how you are doing.

Donna


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



Posted By: Kellyless
Date Posted: Jun 14 2019 at 11:21pm
Welcome Lawsonval, so sorry about your diagnosis, Donna is right that this is the scariest time on your treatment odyssey. The first time I was diagnosed, my biggest regret was not meeting with a medical oncologist BEFORE surgery. With TNBC its often best to do medical treatments before surgery. Talking it thru with the medical oncologist before surgery should be required with TNBC. And Donna is right about the genetic councilor meeting prior to surgery as well. It can change everything, especially surgery. With a smaller tumor of 1 cm you would have a good chance of fully eradicating the cancer prior to surgery, called a pathological complete response, with chemo and other treatments. Studies show that TNBC patients with a PCR after chemo have significantly improved event free survival and long term survival. Its worth discussing all your options prior to surgery while you still have all of the options available to you.  I've posted a link to an article below about that.
Feel free to come here with questions about anything! Or just to vent, all of us here understand the stress, anxiety, anger and any other emotion that's out there that can bubble up through all of this! You've caught it early and that's a good thing! But it is different with TNBC than other breast cancers, so you are doing the right thing educating yourself. 
Kelly

https://www.ascopost.com/issues/december-25-2018/association-between-pathologic-complete-response-after-neoadjuvant-chemotherapy-and-breast-cancer-outcomes/ " rel="nofollow - https://www.ascopost.com/issues/december-25-2018/association-between-pathologic-complete-response-after-neoadjuvant-chemotherapy-and-breast-cancer-outcomes/  ;


-------------
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!


Posted By: Lawsonval
Date Posted: Jun 14 2019 at 11:42pm
the tumor is 10 mm  or 1 cm at its widest point, to be confirmed obviously after surgery, can’t believe I typed mistyped last night

Thanks for answering me, while in shock from the breast cancer diagnosis after reading about triple negative, it really scared me. Will read the articles you suggest. 


Posted By: Meadow
Date Posted: Jun 15 2019 at 3:35am
Lawsonval, I was diagnosed with a 1.0 cm tumor in 2009 and I am living cancer free today. My oncologist said there is no need for me to see her any longer, that I am cured for sure. I have two family members and a good friend who are also officially cured of TNBC. Just wanted you to know that there is every reason for you to be optimistic that you will beat this.

I had bilateral mastectomy because I had a BRCA mutation. I did chemo and it wasn't easy, but not as bad as I feared.


Posted By: Laurarev
Date Posted: Jun 16 2019 at 8:52am
I am not sure how to start a new post, so I am joining in on the lawsonval post. I hope that’s ok. I was also recently diagnosed with TNBC. I am a 46 year old, single mother of a 13 yr old boy and 11 yr old girl. I had a clear ultrasound, mammo, and MR in jan 2019.  Two months later I felt what seemed like a bruise on my right breast. I looked for a black and blue mark but saw nothing. I waited a couple of weeks for it to feel better, but it still felt like a bruise. Within about 3 weeks I could feel  a small lump where the bruised feeling was. I called my OB and he said I most likely had nothing to worry about as I just recently had clear testing in January and breast cancer doesn’t hurt. He said it was most likely a clogged milk duct or a cyst and to give it a little time to see if it goes away. I am an elementary school teacher and I was planning a trip to Florida for spring break. He told me there was no rush to get it checked and to go on vacation and we would do a diagnostic ultrasound when I returned. Well I had the ultrasound on May 13, 2019 and I’ve been on this roller coaster ride since then. On May 21 I went back for a needle biopsy. The doctor called two days later to tell me it was cancer. I met with a surgeon 10 days later who informed me that I had TNBC. I had never even heard of this. My sister had stage 0 estrogen positive breast cancer two years ago and is doing great, thank God. I have been to many appointments over the past two weeks, I feel like it’s been two years. I am being told this cancer is very different from hers in that mine is “rare and aggressive” the tumor is small measuring 13 mm, but the proliferation rate is high at 67%. The surgeon and oncologist have decided I will do a lumpectomy first on June 25 followed by ACT chemo and then radiation. We will not know until surgery if it is in the lymph nodes, but they’re thinking it’s not. 🙏🏻 I am very scared to say the least. My maternal grandmother also had breast cancer in her 40’s but she was in remission for 25 years. My sister had the myriad BRCA test and was negative. Sloan Kettering is doing an impact test on me which will look for 89 mutations. Does anyone know of a specific diet we TNBC patients should eat. Everything ok the internet is so confusing and it seems like there are foods we should or shouldn’t be eating that differ from the other types of breast cancer. For example, I’ve read that avocados, broccoli and salmon are not ok to eat. How can that be?? I’m so confused. I just want to be as healthy as possible as I begin the fight of my life. Also, any advice on how to tell the kids? I went through a very tumultuous divorce two years ago. The kids have been through so much already and I want to handle this as gently as possible. So sorry for the very lengthy post. Any advice would be so greatly appreciated. 


Posted By: Danzig482
Date Posted: Jun 16 2019 at 10:48pm
Can someone tell me how to start a new post? I was only told of my diagnosis on Wednesday and fortunately was able to get into a surge in the very next morning. Unfortunately, the realization that I am just a number came rather quickly. As of Friday afternoon the nurse had even called into the insurance to get my testing approved so that I can proceed with meeting with an oncologist. What? 
You actually called me in two days early to give me the diagnosis, with that ominous ‘and you can bring a friend along if you want’ line.....Well all three people in the rooms up there and won’t make eye contact with me when they use the words triple negative. But they advise I must cancel my Saturday trip (month out of country) because this is serious has to be acted on immediately. Then my patient navigator tells me not to worry she will be setting up my appointments and expediting everything, and will start a referral to Johns Hopkins if I want it but it will take 3 to 4 weeks so I need to start with local care.  She set me an appointment for July 3 with a surgeon then left town and won’t be back for a week so  ???? Why did I have to cancel my trip is it wasn’t urgent and I can wait for just the initial appointment until July 3? Knowing that all of the other stuff won’t follow for another three weeks after that. It’s literally Manuel and to me that they were in the cave the aggressiveness and quicker as of this cancer and then take a lackadaisical. approach
I set my own surgeon appointment for the next day and I have a consult at Johns Hopkins next Thursday.  I guess when she said it takes 3 to 4 weeks to get in she meant it would take her 3 to 4 weeks to do her job and set up the appointment . (I could have been in Monday but the hospital was refusing to release my records so I had to speak to the chief of staff about that!)

Can someone tell me what tests your Surgeon ordered before sending you to an oncologist or surgery? The one I just saw ordered an MRI then bone scan and CAT scan along with genetic testing. They insist on me not leaving with the oncologist until the results come back so that I don’t have to make two trips-obviously I would like to meet with the oncologist first to get some information so I can be better prepared when the results come in as far as how to proceed and understanding and he recommended treatment plan.
Also explain chemo? I know the treatment is probably different for everyone although I would think it would be pretty somewhere with TNBC. Is it something that you get every day for a week or two and then take a break and come back? Or are you just going for a day a week or what? I’m trying to figure out if I will have to move to Baltimore if I choose Johns Hopkins as my provider or if it something I can drive up a couple of days a week. 
With that said has anyone here had experience with Johns   Hopkins? I’m hopeful that I will find it to be more of a team approach and the better stuff expediting things along versus what I have experienced this far with the piecemeal approach. It’s literally only been 2 business days but I can see the train wreck coming trying to coordinate separate surgeon and oncologists etc- and each one putting me at the bottom of their priority list. Not to mention the battle but I’m sure details with my health insurance. 
Any info would be appreciated 


Posted By: 123Donna
Date Posted: Jun 16 2019 at 11:08pm
Danzig,

To start a new post/thread, go to the top left of your screen under TNBC Forums.  You will see different forums:  Welcome New Members, TNBC Talk, Chemo, Radiation, etc.  Click on the sub-forum heading you want to post in.  On the left side under the sub-forum heading you'll see a button "New Topic+".  Click on the button and you can start your own topic/thread.

I'm sorry you are getting the run around.  It's definitely a sign.  If they treat you like this now, you can probably expect the same during treatment.  Find a provider that you trust and values you as part of their team.  You are more than just a number.  John Hopkins is an excellent cancer institution. 

-Tatiana (Tanya) Prowell, MD 
     Johns Hopkins                                Baltimore MD

https://www.hopkinsmedicine.org/profiles/results/directory/profile/0012228/tanya-prowell" rel="nofollow - https://www.hopkinsmedicine.org/profiles/results/directory/profile/0012228/tanya-prowell

Originally posted by Kellyless Kellyless wrote:

One of my favorite doctors ever was my surgical oncologist the first time. It was so upsetting to not have him the second time! My loss is John Hopkins gain, he left to be chief breast surgeon of the s https://www.nccn.org/patients/guidelines/breast-invasive/" rel="nofollow - https://www.nccn.org/patients/guidelines/breast-invasive/ urgical oncology department there. Dr. David Euhus, if your lucky enough to go to John Hopkins, hes incredibly awesome. 


NCCN Guidelines for Patients:

https://www.nccn.org/patients/guidelines/breast-invasive/" rel="nofollow - https://www.nccn.org/patients/guidelines/breast-invasive/



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



Posted By: Lawsonval
Date Posted: Jun 17 2019 at 1:53am
I’ve had mammogram, diagnostic mammogram, ultrasound and MRI, and biopsy, no cat scan or bone scan, nothing on ultrasound or mri except for breast lump. I am planning to talk with my surgeon again tomorrow as I didn’t really understand the triple negative concerns until reading more about it.  I’m not sure about the genetic testing, and will have to ask.  My biopsy looks pretty dismal to me, after looking up the factors, and need to talk about that again with the doc too. I am going to get a second opinion.  I hate the uncertainty. I am 64, no family history of ANY type of cancer.


Posted By: 123Donna
Date Posted: Jun 17 2019 at 8:06am
Some good resources for the newly diagnosed:

https://www.tnbcfoundation.org/living-with-tnbc/newly-diagnosed" rel="nofollow - https://www.tnbcfoundation.org/living-with-tnbc/newly-diagnosed

https://www.tnbcfoundation.org/what-is-tnbc" rel="nofollow - https://www.tnbcfoundation.org/what-is-tnbc

https://www.nccn.org/patients/guidelines/breast-invasive/" rel="nofollow - https://www.nccn.org/patients/guidelines/breast-invasive/




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



Posted By: Kellyless
Date Posted: Jun 17 2019 at 9:31am
I'm so very sorry Danzig, know that these early days are the WORST and you will get thru them. #1 - most important - go on the dang vacation!!! If it's longer than a week, shorten it to a week but GO. You re just going to get all the routine testing done at your local (ahem....sh*tty) hospital - scans: bone, heart, CT, MRI. Little things will show up on them that need follow up, (mine was a "thing" on ovary, lung,  back rib resulting in ultrasound =fluid filled cyst, xray=healed rib fracture I didn't know I had, ?? Don't remember lung test but was a scar from pneumonia 20 yrs prior, all NBD) little things that will terrify you but are 90% of the time nothing. The only deadline on this stuff is before you go to John Hopkins and get Real medical care. And you are so lucky to be able to go there!!! Seriously. I started the first time at a for profit hospital it was a nightmare just like you describe. A kind neighbor that had "normal" breast cancer asked to come speak to me after my diagnosis. She asked if I'd gotten a second opinion? No, I was to freaked! She explained, "I go to UT Southwestern. It's a Non profit research and teaching hospitals. How do I explain the difference.....it's like the doctors at (terrible hospital that rhymes with Taylor) are trying to pay off their Ferraris, at UT they're all trying to CURE CANCER". OMG was she right! My second opinion appointment was with Dr. David Euhus (now head of breast surgical oncology at JH). He spent an hour and a half with us and for the first the first time I felt like I was going to get thru this and live. Early July is soon enough, that's fine. You can even make a plan for chemo with local hospital, with a start date of a week after your two appointments at JH (you are going to get an appointment with a surgeon, hopefully Euhus as well because why wouldn't you?) I had a rare recurrence 7 years after the first time. I needed a second opinion, and I wanted MD Anderson. At the last minute our TNBC guardian angel Steve (he's here on this site) got me an appointment - the Thursday before I started chemo on Monday. My doctor at MDA suggested a different chemo regimin. He and my local doctor worked with my insurance company and got the change approved in One Day, I started chemo on time. It usually takes 6+ weeks from diagnosis to surgery or chemo to start so just.....breathe. Ask your doctor for some Xanax if your anxiety is awful. This is a marathon not a sprint so you need to take care of yourself. and go on vacation!!! It's going to be quite a whi!e before you can do that once treatment starts so GO! 

-------------
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!


Posted By: Danzig482
Date Posted: Jun 17 2019 at 5:55pm
123Donna- I’m going to Johns Hopkins on Thursday. The stuff they gave me the diagnosis said it would take at least four weeks to even get noticed there but Machelle has been an absolute angel and got me right in. I’m pretty excited since I get to meet with a surgeon and oncologist same day.  Thank you!


Posted By: Danzig482
Date Posted: Jun 17 2019 at 6:21pm
kellyless - euhus is one of my doctors for Thursday. I reaearched his whole career and life yesterday at the airport and am thrilled they put me with him. Feeling pretty lucky!

My vacation was for a month -  I bought a house in Nicaragua so that I could help the people of the village there and I try to go if you times a year. Sad i can’t go because they count on me but I get plenty of vacations and can go soon enough. I did book my reservation biktoberfest in october, just upgraded my Harley in May 😍

The only ‘scare’ I’ve had is the not knowing. Until the mris and scans come back who knows but I’m not expecting bad news. Prepare for the worst and hope form the best. My baby girl is coming down From Penn State tomorrow to meet me in Baltimore so that I can tell her the news and I think I might give her the option to go to the appointments with me. Having to tell my kids has been them worst. Justice took it well this weekend but he’s older and independent. My college babe, l am gonna cry my eyes out when I tell her and she’s probably going to laugh and tell me to pull it together 😂

I am incredibly thankful i have the means and opportunity to go to Johns Hopkins. It’s four hours away but I’ll just fly up on my broom 😂 or stay short term. 

Thanks so much for the info. Is there a way to send a private message if I have a specific question for you?


Posted By: 123Donna
Date Posted: Jun 17 2019 at 7:21pm
Danzig,

An easy way to send a PM is to click on the member's name.  You'll see a drop down menu and one option is Private Message.

Donna


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



Posted By: Danzig482
Date Posted: Jun 17 2019 at 7:44pm
thank you - still don’t see it but I think my mobile doesn’t always show the same as a desktop screen


Posted By: 123Donna
Date Posted: Jun 17 2019 at 7:49pm
When I click on your name on the left side, I see "Send Private Message", but I'm on a desk top, not mobile.

The other way to send a private message is go to to the "Member Control Panel" link in the upper left side of the screen.  You'll see an option for Private Messenger (about half way down).

You can also go to the upper right side of the screen and select "Memberlist".  You can search for the member name and then select "Private Message" about halfway on the right side of the screen.  Hope these options work for you.


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



Posted By: Danzig482
Date Posted: Jun 17 2019 at 10:44pm
ok- pm I can see - new post , nope! Lol but thank you I don’t know that I’ll need to do a new post. Just trolling (in a good way) for useful info.
Thank you!


Posted By: Lawsonval
Date Posted: Jul 05 2019 at 4:55pm
Ladies, I have spent my last few weeks reading and educating myself about TNBC, with many thanks to all of you on the forum.  I have a small 7-9 mm tumor, which is shaped like the lead in a color pencil. It can only be seen looking across the breast, and cannot be seen in any test method so far looking through the breast vertically.  I am having a lumpectomy and sentinel node removal next week. No evidence of sentinel node involvement (though who knows what surgery will say).  Can any of you help me with an article explaining how risk ranking is done to determine if chemo is recommended.  Or is it always recommended for triple negative?


Posted By: 123Donna
Date Posted: Jul 05 2019 at 8:46pm
Lawsonval,

Usually the cutoff for recommending chemo is 5 mm.  

Donna


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



Posted By: mainsailset
Date Posted: Jul 05 2019 at 10:20pm
Hi Lawsonval
   I live in WA state too, the north central part, so quite aways from Seattle. Best thing that happened to me was to go to Fred Hutch for a 2nd opinion, they ended up signing me up for a NIH clinical trial and then I was able to get my chemo and treatment at their Mt Vernon satellite office.
   You can PM me if you want to talk about being distant from Seattle and how it impacts treatment.

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


Posted By: Lawsonval
Date 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?


Posted By: Penny
Date 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.



Posted By: mainsailset
Date 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


Posted By: AnneB
Date 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?


Posted By: Lawsonval
Date 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.


Posted By: fkooei
Date 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. 


Posted By: Lawsonval
Date 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.


Posted By: Lawsonval
Date 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


Posted By: deniset
Date 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.


Posted By: BlazeAnne
Date 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.  


Posted By: 123Donna
Date 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.

https://tnbcfoundation.org/what-is-tnbc" rel="nofollow - https://tnbcfoundation.org/what-is-tnbc




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



Posted By: Kellyless
Date 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!


Posted By: Suebhs
Date 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.  


Posted By: mathlady1960
Date 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.



Posted By: Penny
Date 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.



Posted By: Marymom
Date 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!


Posted By: Marymom
Date Posted: Feb 13 2020 at 7:30pm
Oh yes...work is very good!  Keeps you busy and your mind is occupied!


Posted By: FullTilt
Date 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. 

https://finance.yahoo.com/news/cytodyn-reports-continued-positive-clinical-110010190.html" rel="nofollow - https://finance.yahoo.com/news/cytodyn-reports-continued-positive-clinical-110010190.html

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.”



Posted By: James123
Date Posted: Feb 15 2020 at 5:01pm
is this a NIH Approved Study


Posted By: FullTilt
Date 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. 

https://search.nih.gov/search?utf8=&#10003;&affiliate=nih&query=NCT03838367&commit=Search" rel="nofollow - https://search.nih.gov/search?utf8=✓&affiliate=nih&query=NCT03838367&commit=Search

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

https://clinicaltrials.gov/ct2/show/NCT03838367?term=Leronlimab&cond=Triple+Negative+Breast+Cancer&cntry=US&draw=2&rank=1%20" rel="nofollow - https://clinicaltrials.gov/ct2/show/NCT03838367?term=Leronlimab&cond=Triple+Negative+Breast+Cancer&cntry=US&draw=2&rank=1


Posted By: James123
Date Posted: Feb 16 2020 at 9:52am
Thank you for this information 

It’s very appreciated and the drug is helping these women and that is sooooooo wonderful 

Please keep us posted on this website

I know study location is California but hopefully it will be expanded to other areas of the Country as well

😊


Posted By: 123Donna
Date Posted: Feb 16 2020 at 12:16pm
Originally posted by James123 James123 wrote:

is this a NIH Approved Study


James123,  It's a Phase Ib/II NIH study.  This is a very early phase study and usually needs to proceed through Phase 3 or 4 before it becomes approved and can be marketed to the general public.

Phase
The stage of a clinical trial studying a drug or biological product, based on definitions developed by the U.S. Food and Drug Administration (FDA). The phase is based on the study's objective, the number of participants, and other characteristics. There are five phases: Early Phase 1 (formerly listed as Phase 0), Phase 1, Phase 2, Phase 3, and Phase 4. Not Applicable is used to describe trials without FDA-defined phases, including trials of devices or behavioral interventions.
Phase 1
A phase of research to describe clinical trials that focus on the safety of a drug. They are usually conducted with healthy volunteers, and the goal is to determine the drug's most frequent and serious adverse events and, often, how the drug is broken down and excreted by the body. These trials usually involve a small number of participants.
Phase 2
A phase of research to describe clinical trials that gather preliminary data on whether a drug works in people who have a certain condition/disease (that is, the drug's effectiveness). For example, participants receiving the drug may be compared to similar participants receiving a different treatment, usually an inactive substance (called a placebo) or a different drug. Safety continues to be evaluated, and short-term adverse events are studied.
Phase 3
A phase of research to describe clinical trials that gather more information about a drug's safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs. These studies typically involve more participants.
Phase 4
A phase of research to describe clinical trials occurring after FDA has approved a drug for marketing. They include postmarket requirement and commitment studies that are required of or agreed to by the study sponsor. These trials gather additional information about a drug's safety, efficacy, or optimal use.

https://clinicaltrials.gov/ct2/about-studies/glossary" rel="nofollow - https://clinicaltrials.gov/ct2/about-studies/glossary


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



Posted By: James123
Date Posted: Feb 16 2020 at 12:26pm
Thank you Donna 

This is very helpful 😊


Posted By: James123
Date Posted: Feb 16 2020 at 1:34pm
Donna 

Can I ask you one more question?  Is the Drug FDA approved at all?  When I research it online it says it’s effective the treatment of HIV so I didn’t know if it was FDA approved for that use 
😊


Posted By: FullTilt
Date Posted: Feb 16 2020 at 5:57pm
They are in the process of filing their biologic license agreement (BLA) to get FDA approval in HIV. They have been granted fast track designation with rolling review and have already submitted the first 1/3 of the BLA application, the clinical section.


Posted By: FullTilt
Date Posted: Feb 16 2020 at 5:59pm
Trial using Leronlimab in cancer.

The coordinator for this study is Natalie Rabb. Her email is  mailto:Natalie@questclinical.com" rel="nofollow - Natalie@questclinical.com  and her phone number is  tel:415-353-0800" rel="nofollow - 415-353-0800 . 
 
Address:
Dr. Lalezari
Quest Clinical Research
x-apple-data-detectors://2/1" rel="nofollow - 2300 Sutter Street Suite 202
x-apple-data-detectors://2/1" rel="nofollow - San Francisco, CA 94115
mailto:drjay@questclinical.com" rel="nofollow - drjay@questclinical.com
 
Dr. Dolezal
Pacific Hematology Oncology Associates
x-apple-data-detectors://3/1" rel="nofollow - 2100 Webster Street Suite 220
x-apple-data-detectors://3/1" rel="nofollow - San Francisco, CA 94115
tel:415-923-3012" rel="nofollow - 415-923-3012
mailto:david@PHOAMD.COM" rel="nofollow - david@PHOAMD.COM
mailto:mgascon@phoamd.com" rel="nofollow - mgascon@phoamd.com


Posted By: FullTilt
Date Posted: Feb 16 2020 at 6:00pm
Natalie is a very nice lady and will be very helpful!


Posted By: FullTilt
Date Posted: Feb 21 2020 at 2:18pm
More incredible results! Amazing how fast this is all developing.

VANCOUVER, Washington, Feb. 21, 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, reported that it has received Institutional Review Board (IRB) approval to begin its Phase 2 clinical trial for the treatment of approximately 22 different solid tumor cancers, including melanoma, brain-glioblastoma, throat, lung, stomach, colon carcinoma, breast, testicular, ovarian, uterine, pancreas, bladder, among other indications.

Nader Pourhassan, Ph.D., president and chief executive officer of CytoDyn, stated, “We currently have more than 70 patients eagerly waiting to participate in this basket trial and expect the first patient injection to take place within approximately ten days. Furthermore, overall enrollment of the trial could be completed in as little as 30 to 60 days, as this is a 30-patient trial.”

This basket trial is a 30 patient, CCR5+ Phase 2 study with locally advanced or metastatic solid tumors. Leronlimab will be administered subcutaneously as a weekly dose of 350 mg. Patients participating in this study will be allowed to receive and continue the standard-of-care chemotherapy as determined by the treating physician.

The clinical trial will take place at multiple sites across the U.S., with preliminary results on each patient expected within three to four weeks after the initial treatment with leronlimab. The primary endpoint of the basket trial is progression-free survival.

“Peripheral blood sampling from Patient #1 in the mTNBC trial, who has been on leronlimab for approximately five months, revealed no cancer cells or cancer associated cells (0 CTC, 0 EMT and 0 CAML). In addition, Patient #2, who has been on leronlimab for almost 3 months in the MBC study, with brain metastasis, continues to show in the latest CT scan, stable lesions that are now described as scar-like suggesting repair in the metastatic tumors,” added Bruce Patterson, M.D., chief executive officer and founder of IncellDx, a diagnostic partner and an advisor to CytoDyn. “These data are substantiating the relationship between CCR5 and immune cell infiltrates and response which supports the current basket trial.”

“Our current basket trial focuses on method of action (MOA) rather than a specific cancer type,” continued Dr. Pourhassan. “We are extremely pleased the central IRB provided approval to proceed with the trial in a matter of weeks. This process can often take two months or more. If leronlimab proves to be as effective in this basket trial, as we have seen in our mTNBC and MBC patients, this opens up a strong potential for CytoDyn to file for another Breakthrough Therapy designation (BTD) for the 22 cancer indications being evaluated in this trial.”

About Basket Trials
A basket trial involves a single investigational drug or drug combination that is studied across multiple cancer populations defined by disease stage, histology, number of prior therapies, genetic or other biomarkers, or demographic characteristics. It is usually designed as a single-arm, activity-estimating trial with overall response rate as the primary endpoint. A strong response signal seen in a sub-study may allow for expansion to generate data that could potentially support a marketing approval.1




Posted By: James123
Date Posted: Feb 21 2020 at 2:32pm
This is so wonderful 



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